some things are shinier than others...

Well, I am up at silly hour despite feeling tired and trying to go to bed, because I was then plagued by a whirlwind of crap thoughts. I do have some good stuff to say as well, but I find it best if I vent my angst, then it may leave my head long enough to allow some repose ;)

Deri's father, my ex, or twattybollox as he is affectionately known to lil ol me, has been absent for about a month. This followed about 2 weeks of phone messages/voicemails asking to see her despite having had an ultimatum, given because of severe lack of responsibility/regular contact/no maintenance etc, all due to him becoming a massive alcoholic/drug abuser and throwing in some DV for good measure. His last chance was something he fucked up massively, and we may need to do things like injunctions etc. He also knows I am not well. Out of the blue last night. He said he'd come round to drop off stuff, I reminded him he was banned and if he showed up I'd call the police, and that I'd been told he was in no fit state to see her anyway. He then said something about doctors notes and court and judges, so I said how very VERY low of him to threaten ME with court whilst I was going through chemo.
I didn't get another text then. Funny that. #stupidbastard.

AHEM.

Then, tomorrow is my rituximab/antibodies day (weekly now). It usually passes without much adventure, I am usually like a woozy zombie and fall into bed afterwards, so it should be routine. BUT. I am awaiting results of the bone marrow biopsy etc. And then I started THINKING about it all. Such a BAD idea I know! So I started thinking about the processes... the lung function tests and dentist checkups etc. I guess if I fail those, I can't have the stem cell treatment? I am expecting to pass with flying colours, but at 1am, it all swirled around in an ever decreasing circle or WHAT-IFs, together with anger and frustration about the ex and why Deri should have to a) have to suffer a father in such a state and b) not be able to have a father BECAUSE he is in such a state, and not looking forward to more hospital stuff and and and and and.......................................

So. Light back on, hot chocolate with mini marshmallows and toast with special butter, laptop on and a rant in full flow! :)

And I have already blogged about what a nice week I had last week ..... to add to that loveliness, I have to say that my daughters really spoiled me with very thoughtful gifts on xmas day, bless 'em :) And of course Santa was very good to them too ;) And a table groaning with festive food at my mother's, with more gifts (and a trollbead yay!), and a lovely time there, mum loved the Welsh slate clock and then in the evening, onto my stepsister's, where this always a huge buffet and her hubby's converted garage which is now a ''pub'', with a bar, optics, bar stools, wooden table with church pews, a Wii and a screen for when the sports are on!! Another trollbead there too! As I treated myself to one on xmas eve, and as a certain person treated me to one last week, I now have 6 and I'm loving how the bracelet is taking shape :))

I LOVED spending so much fun time with my kids and my family. We have made things and played things and laughed and just been fab. And I had two friends turn up, from different places, with home made goodies - K came with sloe gin, and her hubbys hand made body butter, and S turned up with a hamper he and his wife made - all home made, wine, chocs, shortbread, etc. I have very much felt the lurve, maaaan...........................

Anyway, I had better read a bit or something now, and get some snoozes in before the alarm goes off at 7am!

Hugs and love and spoons xxxxxx

Friends, Birthdays, Trolls and Babies

Well, this week has, I have to say, been mostly, Bloody Lovely :)
Monday - two friends from work wanted to have a catch up as not seen them for months, and they treated me to a pot of tea and a jolly good laugh at the Angel. Had a good ol' natter, made me miss work and wonder how I ever did so much haha! :) I then decided I would go and see what all the fuss was about the new improved Waitrose, and in the new John Lewis section, found a a tiny box containing magnetic ladybirds/ or frogs - blast from the past!! I had the frog ones as a kid, the magnets repel so when you face them nose-to-nose they spin around! :) I bought ladybird ones to go in Deri's stocking :))
Tuesday - reflexology in the morning, then met LM for lunch and coffee and trollbead hunting and chats and giggles :))) Came away with more smiles and a surprise bead!!
Wednesday - Rituximab day at hospital (no reactions, seem to be behaving now) - lift there and back from mum, who also took Deri shopping whilst I was there, and drove me home with Bry so we had an Early Birthday Tea for Broni :)) Nomnom!
Today - B's 14th Birthday!! She brought ME tea in bed bless her, and then we opened everything and she loved the new black shiny acoustic guitar I bought :)) She has been practising with an old 3/4 on and so I was thrilled to find her this one, plus it's black to go with her grungy look ;)Off she went with Charlotte then for birthday lunch at Frankie & Benny's! Lou came over for lunch , with baby Vince! I had cwtchs and he burbled at us and was very cute indeedy, and chatted with Lou and it was bliss and we pigged out at lunch and even D came in same room as the baby this time haha!
So, for all my whinging and gnashing of teeth, which is still valid of course ;), I have had a fab week so far, all because of my friends and family :)))
And it's the Solstice today and the sun returns and I am sending blessings of strength out there for me and for my family and for my friends. Love you all....

Given a nudge

A friend asked me this today - ''Is it my imagination, or are you struggling with something other than your illness''?
Maybe I am; I have certainly neglected this diary and up to now it has been quite cathartic. I think I have been knocked for six by recent events and come up against a brick wall, on many levels. So, to address the question:

Hmmm....... good question. I don't know, am I? If it only it was just the cancer itself I had to deal with. With it come so many other things. On many levels. Such as worry about the girls. Worry about work/keeping job. Pissed off that just as I was getting sorted again and was in an enjoyable job and had enough money that it's all been sent up in an uncertain tornado again. Disappointed in certain people, although thankfully not very many. Frustrated that I need help and support, especially from my mother in regard to the children, and feeling suffocated by it at times. Fed up feeling weak and tired and unable to enjoy my friends' company for very long. Having to deal with people who either head-tilt or avoid or panic or run off, and then deal with the moment where (sometimes) they then apologise
for doing it. Worrying that if I go on long term sick, will I afford the rent? And underlying it all, barely within hearing, the constant nagging doubt and fear of test results and scan results and the 'what-ifs', because no matter how strong or positive you are, how can you always avoid all that? It creeps up when least expected. You keep smiling because it helps everyone around you. When you cry they panic and imagine something awful. I KNOW that I will be ok, and that things will get better, and that I am kicking cancer's arse. In 6 short months my life has been
turned upside down and inside out and that would be ok if it hadn't affected my kids too. And when you get settled with one treatment plan or one type of medicine then they change it if your lumps play up, which can happen at any time because cancer can be tricksy, and a wave catches you up and throws you around and nothing is certain anymore. And however tired or sad or scared you are, you have no choice but to be ''brave'' and carry on, because there is no other choice, whether you will be better in 3 months or 6 months or 6 years, you have to go through whatever they want to put you through. You could go alternative, eat raw food 24/7 and juice everything you encounter, and I'd love to be able to have enough faith in that
because it's what I have tried to follow in my life, but ... ... ... and yet, this chemo etc, it's working it seems, but can have all sorts of side effects. So I am doing chemo and making juices. I have a Hickman line in my chest, and I make positive affirmations to myself. Someone said living with cancer, however long for, is like living with white noise. Always there, whether the cancer or the side effects or the concerns that come with it. I'm not as relaxed as I used to be. I have moments, but they're not the same. I am VERY lucky, because I have tremendous friends too!! Oh yes, everyone, and I am bowled over by the support, in its many forms, and I hope you all know how much it means to me to be treated as
normally as possible and to just 'be there'. I know for sure that I AM loved. I know how fucking strong I can be, more than I realised. P says she thinks I look angelic at the moment!! My head is all over the place, but I DO know where I
am focused, and cancer can jolly well fuck off. Small things make me smile, give me tears of joy, more so than before, and I have always been a soppy sod! I have pangs of terrible envy when I hear someone has just had a fabulous day/trip/holiday, and I rage for a few minutes about why MY life isn't so fucking easy right now. But then I sit with my daughters and we laugh and we share silly moments, or I walk the dog and find rainbows to take photos of, or a stranger catches my eye
and grins at me, and I know that it'll be ok.
As they say, 'this too will pass.' It's just a shit that it happens at all! ;-)

Home again, home again, jiggedy jig

Isn't sleep lovely??

Anyway, where were we? Ah yes, the bone marrow biopsy day. I left the last blog, then as I was about to tuck into bed, felt sick; it seems maybe a dodgy sandwich ma have set me off, but I filled a bedpan (remember they left me a stack to measure my wee?) with a days worth of vomit. Haven't felt right since! Anyway, Thursday had a couple of visitors, with more books! :) Also had to lie on one side as I was indeed feeling as Sandra the nurse had described.. as though I'd been kicked like a horse!
Also wanted to share all my experiences with my mother but knew it would add to tension and had to wait. More cwtchs from Deri Thursday evening! :) (Just remembered - Mum also got her bouquet last weekend, Pam helped me sort it out.)

Friday was a quiet day so I slept, which was fab. Didn't eat much as the hospital food seemed to get worse this time in, plus feeling nauseous anyway.
Megz and her b/f turned up again Friday, with tales of tense atmospheres. I began to think how I could split up the week next time so my mum and stepdad don't need to have the kids all week, because it just knackers them out! Mum, Bry & Deri turned up as well, looking tired! Ok, shall we go over the pro's and cons of being a single parent again now??

Came home Saturday, feeling ok but queasy. Bryan tried to rant about the kids' behaviour but I soon shut him up - wtf?? Timing dear man, timing!! Proves how overtired they were, how my mum's stress can impact on him etc, otherwise he wouldn't have tried ranting as I'm hanging out of his car window. Plus, teens ARE often moody or grunt at you, and 7 yr olds are hard work , PLUS, maybe my 3 girls were stressed too and being a bit gruff or hyper occasionally is probably expected, no?

So, sat down with a cuppa, all kiddies out, and told mum and Bryan everything. So that's out of the way. Told Bryan the holiday in May may not be able to happen due to SCT (stem cell transplant, look at me with my abbreviations), or perhaps swap names or something. Mum wondered of B and D would still want to go without me. I have reservations - 1) B would prob go if M there too as they could hang out etc, but B won't want to always do stuff with D when D doesn't want nan to do it etc.
2) if B, god forbid, acts like a teenager whilst being a teenager, or Deri gets a bit full on, mum and Bry can get stressed and then there will be rows and recriminations. 3) if D and B DO play up unnecessarily, it will spoil nan and bry's enjoyment! 4) if I'm there I can smooth things over/ humour folk, or take my kids off and have a word if needed without needing to stress mum out etc.
Maybe they should take mum's sister and hubby and just lose the money for Deri, and my kids can go somewhere later in year, plus of we take Deri to Tenby one sunny weekend, she won't care where in the world the beach is!
Mum stayed here Sat night and cooked a lovely Sunday lunch, then headed off about 4. Monday I went back to sleep after D went to school, mum came over with a pan of bolognese for us to warm up later for dinner, and a nice fresh salad with prawns for lunch with fresh bread rolls. She is a star. Just wish we could remove that instant stress button, she'd be a lot happier too :)

I felt tired sore and grumpy Sunday, and veered between thinking 'ok, we're kind of half way there' and ' I don't know how much more I can take'. I was deflated, and nearly defeated, and I suppose just being so exhausted didn't help. But also, I had to acknowledge how traumatic last week was. A lot of things happened, physically and emotionally and mentally. It WAS good that I cried so much Tuesday and Wednesday, after all, it's good to be strong, but if you don't release stuff, you can't gather more strength for the next stint................ I have a lot of amazing support, messages and emails and visits full of love, and it is tremendously useful :-)

I am feeling a lot more like myself today - i slept from 8.30am - 12.30 again ... as I said, isn't sleep wonderful...?

3 days in. 1 more little bombshell

Arrived Mon am with no room for me - was put in assessment room on a spare bed then given the rituximab, told to watch out for any possible side-effects which can happen first time. Quizzed Jodie on what name my lymphoma has now. T cell rich diffuse B cell. Not that common but responds well to treatment. Then BAm told I'd need to give a bone marrow sample in next day or so. ?!?!?!?!?! Nice. Well an hour later, my throat became instantly dry, scratchy and closing up. Ah that'll be my side effect then. Jodie turned off drip for half hour. Throat opened up. Drip on again. Cancer sucks I thought to myself!
At 3pm told I'd have to wait til next day for side ward so onto a 6 bed ward for the night with Utter Loons: strokes/dimentia etc. I turned nursy, finding slippers and stopping Ellen trying to sleep with a pillow over her face. By 2am they had stopped shouting or yelling or farting, and I could slumber.
7.30am next day Deri is on phone:upset I'm not at home & refusing to eat breakfast. I reassure her and gee her up and get her to eat. Get off phone and crumple. It's all too much but I can just about hold it together if my kids are ok. Natalie the lovely nurse closes curtains round my bed, cwtchs me and I have a good sob. I imagine having a punch bag like boxers have and we laugh but not before I nearly have HER crying!!
11am.... Side ward found, huzzah! Same room as before! Huzzah twice for own loo, a door I can shut people out if I wish, and quietness! G visits after lunch-bless her bringing choklit and mango! Deri n mum n bry turn up at 7! Yay! Much cwtching :-))
Today, 07/12 - whisked off at 9am for bone marrow thing. 3 attempts: OUCH. Then " oh you have dense bone, we need longer needle".
Oh great. Nurse says only when you get a feeling like toothache down your thigh for 30 seconds has it worked. Immense pressure and wiggling and pillow gripping then ow, toothache in leg. Thank fuck, I think, it's done. " Ok stay there whilst we get a bit of bone". I beg your fucking pardon? A feeling like a corkscrew drilling for oil, me bursting into tears, and - it's done. Fucking pissflapping bastard bollocks!!!!!!!!!!!!!!!!!!!!!!!
Then up onto ward again and plugged into chemo and 'don't get dressing wet for 48 hours' and as I wheel into room, yay for G and LM are waiting for me!!! G brought books and more mango then has to go as off to her kids school play. LM has whittled/carved me a little deep wooden spoon for when I run out!!! :-)) AND a little mouse made of hugs :-)). How special do I feel?! And coffee and brownie and tangerines! Bloody hell I have amazing friends!!!!!
Deri n bry visit at 4 :-D cwtchs yay!!!
K visits in eve with cwtchs and delicious gifts (I won't get out of door on Sat!) them Broni n Megz n Ben!!! Whoop!
Now exhausted and going to flop out on pillows!
Love you all! Xxxxxxx

Went in to get 'clerked' for Monday, ended up with biopsy results

Evening folks.

I don't know what the stats are for misdiagnosis, but apparently I DON'T have Hodgkins, I have NON Hodgkins (diffuse T cell blah blah).

So I will have 6 - 8 treatments with this new bag, which isn't strictly chemo, it an anti-body that begins with R. And 3 goes at IGEV, with next week being the 2nd. So I get 'R' this Monday, then the following Wed when I'm home (pop in to ward for morning) then again on 21st, then a week off for xmas ... also will have dates set soon for stem cell extraction.

I feel a bit gutted, as I was just getting my head around have HL! Which may sound stupid, but that's how it is ...

I didn't ask if much difference in prognosis, just went off to get the forms filled in ready for going in. I don't need to go in on Sunday night as I don't have a ''bulky mass'' on my neck this time, so can just turn up 9am on Monday.

I've told my mother what the schedule is but not about change in diagnosis coz I can't deal with her high level anxiety. I just had to chill her out anyway as my 13 yr old was trying to sneak off to stay with her girl friend at a boy's house (differing stories let them down) and I tried joking about teens and my mum turned it into a scary event all about boys and men planning something 'dreadful'. Fucks sake, teens do this type of thing, ie: sneaking, and pulling a fast one. Boys may indeed try it on, but the way she went on she made it sound like a paedophile ring!

Anyway. My 13 yr old has been delivered to her friend's house where her mum is keeping them in!

And I may open the vodka.

That is all xx

SURREAL! But also, perhaps a touch of genius?!

Well. I was given another reflexology appointment for today - and offered to go along all day to take part in their Thursday coffee morning and craft session! Hmmm. Well, they looked at me so expectantly and all smiley and I am getting free therapies, so I did it!

Sat on a red minibus picking up very elderly people, made crafts with more people, some of them slightly less elderly - actually met Sheila, a very chirpy cheeky and mumsy Irish lady who made me laugh! One of the craft ladies leading the session was my eldest daughter's boyfriends aunt?!?

I did make some very funky things with felt and blanket stitching and wished I had time to do this instead of working - oh, hang on..............................

Then we had our free lunch (very care home - sorry!) by which time I was morphing from a patient to a carer HAHA! Then some delightful reflexology and bantered with Loud Anne (another patient) who wants to be Boss HAHAHA! back on the minibus, and got home feeling very relaxed, but VERY weird!!!!!!!!!!

Ok, FIRSTLY - I had a plan, courtesy of Nancy, to talk to Deri to get her to view the tubes as USEFUL and friendly not as something mummy has to ''endure'' - and the counsellor agreed with my plan - so (and here is where my writing and/or O level Drama came in useful) , I decided to talk to her on the way to school =

"Mummy is going to see the doctor later for a checkup. I was very happy last time I went." 'why?' " Because I was having medicine and I thought about how lucky I was to have my tubes" look of bafflement from Deri. 'whys that mummy?' "Well, the man next to me had to have 3 big needles injected in him for his medicine, which took ages and hurt him a bit, and he asked why I was ready earlier than him. So I told him about my tubes and how they make the medicine go in faster and I don't need to have needles every time I go in. He said he was quite jealous and was going to ask his doctor if he could have tubes. And the lady opposite me said her tubes were useful and it was only a bit annoying when you were in the bath but she's glad she has them so we were both happy together and the man thinks he should get some too." Thoughtful expression from Deri.

Ahem.

So I let that filter down through the day. During dinner this evening, at which mum and stepdad were here (and I had explained to them my hopefully Cunning Plan), Deri said to me - 'mum, have you told nan about (stage whisper) the man with the three needles?' So of course I had to re-tell my story to my mother, who was fab and said 'Oh Yes, I expect he was very jealous and maybe next time you'll see him he'll have tubes too' - but it seems the Cunning Plan is already working?

Let's see what happens over the next couple of night re:anxiety...?

Update

So, I am going in on Sunday night. My bloods have made the doctor happy enough to take me back in at 21 days not 28 days, which was an option they mentioned when I went in the first time. As an extra bonus (ooh NHS you DO spoil us!!) I get an extra bag of different chemo (consultant will go over the whats and wherefores on Friday when I go in to be clerked) on Monday, and start IGEV Tuesday, so I get an extra night in and come out Saturday.

This does mean it rather handily fits in with my social calendar - ie: I do NOT miss Deri's play on the 15th, and I will be on form again for B's birthday on the 22nd and for xmas etc. Huzzah!

I called the counsellors re: Deri. They said so far I was doing all the right stuff, to keep talking, and that a suggestion I had about having a chat about ''how USEFUL these tubes are because mummy can have her medicine so quickly and without it hurting, unlike some other people who go in and have to have lots of injections all day'', etc, was a good plan. I mentioned an idea about disconnecting the tubes when D visits me this time, and she said it MAY confuse her as I'm in there to have lots of medicine, so maybe just get a nurse to pop in and say how wonderful the tubes are as well? So I feel a bit better and I hope Deri won't get too upset when I tell her I have to go in again. She's in a ballet show on Sat (must be the time of year for shows!!!!) so maybe tell her after that, or, tell her Friday after school so she can get used to it might be better. Anyhoo. We're getting there.

My eldest and her b/f are cooking dinner this evening. I think it involves oven chips and other stuff... and I'm loving it coz I am lying here (after not quite getting the duvet day I planned) being waited upon :)

Birthdays, again...and check ups

Yesterday the lovely Jo took me to the hospital for the bloods etc - all very good, the G jabs I did all week worked and all counts up enough not to be needed until next Monday - the histology dept still not sent back their assessment of the biopsy so still going with our lots assessment for now. So, a whole week off for good behaviour :)
Followed by bit of shopping for wrapping paper and obligatory stop at coffee shop ;)

Today - M's 17th birthday!!!!!!!!!!!!! Whoohoooo!!!!!!!!!! Lots of lovely pressies later, then off for proper driving lesson!! Her b/f has given her some mini-lessons so she had a bit of a clue, and the instructor was impressed and she said it was weird but brilliant :D

Auntie T is finally over her 2 month long chest infection so came to visit yay!! We are very close - she was married to my mothers second-youngest brother - he died 4 years ago at 52, from cancer of the oesophagus. Long story of docs telling him it was all in his head - anyway, diagnosed in the March, died in the July. Not many people could cope with his rapid descent, my mum and I spent a lot of time with him. He hated being ''a patient'', so I used to go and take the piss and have a laugh - we were both black sheep of the family so had always got on - I always felt as though he and T were brother and sis-in-law not uncle and aunt! :D

My mum came up trumps this evening - she cooked a birthday treat of a chinese meal - so delicious!! Thanks mum!

Noticed that I have much less hair on eyebrows and arms this week. What will I look like with no eyebrows?? ;)
Picked up my voicemails from this afternoon - Jodie from my ward - said can I call her by 4 or tomorrow morning, nowt to worry about but its about my next treatment - NEXT WEEK?
Oh. I thought it was the 12th?! I kinda want it next week coz then I'll be out for Deri's xmas play in which she has a big part haha! AND, they did say if my bloods were ok, it might be 3 weeks. OR - - - - - have they had biopsy results back again and are not wanting to wait?

Oh balls, it's all such a friggin guessing/waiting game!! Hurumph!

Ahem. Anyway, could be worse :)

Food and visits and more food and Moomintrolls

So, Saturday, Deri was off to ballet then a 'pamper party' for her friend's birthday - pamper party?? Heehee! As my friend Liz said, when we were 6/7, it was soggy sandwiches and musical bumps in your sitting room ;)
So, that meant I had 11-5 to myself, as Megz was out - with Ben do you think?? :D, and Broni was out gallivanting in Cardiff. My dad called - gosh - so he and stepmum came to visit, bringing choklit and new PJs!
Then, because I had been saying I was upset over Deri's nightmares, my fave Moomintroll made a mad offer to come cheer me up, and I said it would be nice, and then we realised it could be done actually so had a funny meet up in the cafe!! I THINK she may have broken some speed limits to get there that quickly!! We took photos of each other being ugly trolls for H and then dashed off.
Deri swirled in shortly afterwards, very happy and excited. And then R, a mum from Deri's school, turned up with homemade casserole and French apple cake!! VERY kind!
I shall soon be HUGE! heehee!

Today I had a fab catch up on the phone with E from London. Then just as about to leave for lunch at mum's, had a call from K who said she was again staying with her friends on Glanusk (G&E and their baby girl R) and should they come over with stuff? Heehee! So, at 4pm, K and G came, with baby!! - and brought mince pies and ...ta da daaaa ... choklit!!!

I am quite achy today. I have felt like I may be on the edge of a cold, but it's prob just chemo bleaugh-i-ness - so, top up the drugs!!

Check up at hossie in the morning, then see when they want me next so can work out my week - ie, how many days sleep can I have and what else do I need to do around the sleep :-)

Adventure... haha

Ok, so today, for the first time in two weeks, I ... Went Out On My Own. I drove to my little village to get birthday cards etc for the Free Range Teens, oh, and their pressies from Deri, and some fatballs for the birds, and a shiny for me yay! I bought a more substantial clasp for my trollbead bracelet, as I AM intending on it filling up ;)
It was quite exciting, in a sad way haha, to be driving and out on my own!!

Had a visit from auntie C this afternoon, and she brought foody treats nomnom! Lovely to see her and J, and then I did some more internet shopping but this time for food!

Tonight - well, I cooked pasta for Deri, sent Bron off to youth club (yes, I KNOW they go round town really!) and now Deri is a-snoozing, I am doing nothing exceot watch crap tv, lurk on the laptop, and eat G&B choklit :))

Gold star for blasting

Yesterday Em M took me to hospital for my bloods and check up etc - bloods and platelets lower than Monday but not enough to have to do anything about, and don't want to see me until Monday unless something happens. The doc started to list off what things I should call about, then stopped, looked at me and said ''oh but you're sensible so I don't need to tell you that'' - haha! It's official, I am sensible. I wonder how long that lasts?? ;) The initial assessment of the biopsy shows that Mr Lumpy is still HL, its been sent off for further analysis for confirmation etc.

So, then Em and I went to the cafe on the way home and had a cream tea - fresh, warm scones too, nomnomnom!

Last night I felt quite bright and had a little more energy, but I held back and didn't do anything much! Mum was here cooking, and looking knackered herself. So I introduced the idea of her not being here Friday or Saturday, us going to her for Sunday lunch, and then just coming here Tues and Thurs next week - Tues is my eldest's birthday too! I don't know what date they will give me for going back in, but my mum will need all her energy that week agaain, and as I'm ok to shuffle about with help from the girls this week, it makes sense to have mum's help when really needed :) "Are you sure?" she asked - "what if you feel rubbish one day?" 'Ah, well' I replied - ' thing is, I'm officially sensible, the doc said, so, if I have a bad day, I'll call' ... hehehe!

Today, I woke up at 4am with massive backache, so took co-codomols and turned electric blanket on and went back to sleep - but am KNACKERED today - shuffled about whilst the girls got ready for school, then went back to sleep at 10am and woke up at 1pm, been finishing off some birthday present/xmas present shopping online for my gorgeous gals :)

Ooh, treats!

So today, Kerry came over this morning for coffee and brought huge Chelsea Buns - oh dear what a shame!
Then at 1pm, a big red minibus from Usk House Hospice picked me up and whisked me off for complementary, complementary therapies! So, I was made a coffee and then my therapist arrived and I was assessed and filled in my forms, and as I can't have massage at the moment, I was offered reiki or reflexology. I have experienced (and given) reiki, so I thought I'd give the latter a go - oh my goodness, pure bliss! So very very nice. Then the driver brought me home again. How fab was that?!
New washing machine that has its door completely working with no leaks arrived today so sending laundry through at a rate of knots!
The itching - grrrrrrrrrr! It is getting better I must say, but if you could see the rash (must try to take pictorial evidence!) - bleugh!
Tomorrow, more check ups and results of the biopsy too methinks. Let's see what Mr Lumpy has been up to and keep blasting him into space!

Ahhh..... home .... :)

Well, that was the weekend then. Quiet, sleepy, bit fuzzy round the edges. I am ok, bit feeble, bit unsteady on my feet but feeling well in myself - got lots of meds to take and a week's worth of injections to give myself for my blood count. And I need to get some anti-histamine tomorrow as I am a little itchy all over. But I'm eating, drinking, chatting, typing, in between lolling or sleeping!

My poor mother is exhausted! She needs a holiday now lol! I have a fridge/freezer in my pantry down the hall from the kitchen, but Bryan and mum decided that was a bit too far so they have put an under-the-worktop fridge in the kitchen itself! :) They have tried doing everything me and the girls normally do.
It's made me realise how many things a day I usually do. And I know these are a normal amount of things (well, my kind of normal), but - don't we all do a lot of things?! hehe! Was I silly to try carrying on working? I don't know, it did me good in lots of ways. But damn I DO need to rest, so being forced into it is probably no bad thing.

I have napped lots today. I wanted to call more friends. But am a bit pooped! ;)

Meg and Ben came back from his mum's today with a portion of stew his mum had made for me :)

I'd just like to say more thanks to everyone who is with me on this journey. I'll try not to let it drag on too much longer now ;) haha!

Love and Blessings to all xxx

Hospital Catch-Up .....

I am home now. I couldn't access this blog from my phone very well, but did get onto macmillan, so I'm going to grab what I scribbled there and drag it over .... so niiiiiiiiiiiiiiice to be home!!!

Captain's log: day 1 on Gilwern Ship:

Ok. Day 1 = not bad. 3 different drugs took just under 3 hours. Bit light headed n woozy about 1pm but popped a pill and ok after that. Ate all food fine. Had visits from mum n Deri then Megz n Ben and then Kerry. Deri brought me a cuddly. Megz bought me pink bedsocks with my name on and Kerry bought bananas and green n blacks dark choc :-) Lots of anti nasty drugs given too. So slept well and having brekkie now. Bit headachy so going to take Hilary's advice and take more drugs; how can I argue with a lady with such impeccable taste?!

 Day 2 on the good ship Gilwern:
Well I took anti sickness and two cocodomols before bed and woke up with no achy neck huzzah! Doc came by and said I looked less pale and my neck looked smaller!! Already?! Oh yay and then some!! Just one bag of chemo today and more pharmaceutical drugs and I AM more tired but doing ok :-) Today I was spoiled some more! Lynne brewed fresh coffee in pot then decanted it into a flask and wrapped two china mugs and came to my hospital room! Wow! Then Jo turned up with pecan danish delights! Nom! Then my mum and Broni came with hugs, mmmmm, and melon and mango butter cream (my skin is so dry, bits flaking off on my legs!), and Lyndsey arrived with Amé to drink and books and pain au chocolat and mini popadoms! How lucky am I??? :-D By the way, my P went into 'panic about cancer' mode a while back and is hiding in his cave which is why I've not mentioned him recently. I offered him opportunities to admit being freaked out but he's ignored them. So I told him to stay in his cave as don't need folk around me who are faffy plus I'm surrounded by people who love me - and I'm not sad because he can't really help it and people's true colours come out and I have better things to think about... AND, people come into our lives for a reason even if it's not for long so take the good bits and smile and travel onwards... So day 3 tomorrow, another one bag day...

3rd day aboard Ship Gilwern
Yesterday went well, slept well and had a surprise visitor from afar. I DO wish typing here from your phone would allow paragraphs! I'll just have to go paragraph mad when I get home.... Well- I say I slept well - apart from being woken by the poor old lady next door who does impressions of a hacking hag every few hours or so which lasts for 5 minutes: 3am, then, I was shaken out of sleep for a good 15 mins whilst her lungs tried n failed to expel whatever foul mix is inside and whilst nurses dashed in and out. Good grief, poor lady, and also, my poor sleep! My eldest sent me excited texts from London - 6th form school trip - all day and my mum and Deri came visiting at 6 with shining examples of Deris correctly answered homework hehe! And some cuddles and miss-you's. Lump still a-shrinking heh heh heh!!! The jolly fabulous Jodie (sister of Windsor suite) has just come up and plugged my chemo in for today (did I tell you I'm on 2 drips? One runs for 24 hours) and said that considering what I've had shoved in me this week, I'm looking rather well :-)) so gold stars to YOU lot for all your good thoughts/best wishes/promises of cwtchs etc! :-))) I AM more tired and napping a bit more but doing ok...

4th YAWN day was thus spent...
Yes, you guessed, 4th day was mostly spent yawning or sleeping! Good job they give you these big beds with moveable parts to lie on eh? :-) All blood and urine tests are happy ones apparently which is good. Finally had the Dissappointing Meal last night - yuk!! Pasta Bolognese - how can you mess that up?? Ah well. I had pineapple slices and choklit to make up for it! A lovely visit from my gorgeous Deri! And now am waiting for breakkie and 11am when last drip is disconnected and they get me my take-home meds and sign me out!! Eeeeek! Heh heh xxxxxxx
 Beam me up Scotty...
Whizz! Bang! Whoosh!
Well, being hospital with it's own time warp, it was more like ' hang about a bit', 'hang around a bit more' ... then when I was ready to be unplugged from my constant companion (Drippy, very reliable but not very chatty), I had a bit of a funny turn felt hot and wobbly and a bit pale and 'fainty' ... the lovely nurses laid me back on my pillows, opened the window and put the fan on and got my Boob Tubes cleaned up - 10 mins later I was ok and called my stepdad and the porter pushed me all the way to the car in a shiny wheelchair ... and then - I was home!
Hugs from a relieved looking mum who then bustled off to prepare dinner; Megz n Ben were here with hugs and then dashing off to construct her new bed! And then Broni rushed in for cuddles too! Deri was supposed to be staying at her friends for a sleepover, but then my friend G phoned to say Deri was crying because ''Lucky the cat had been run over"
We don't know any cats called that.
Poor Deri, it's all obviously been a bit too much for her this week! :(
So G brought Deri home and Deri clung to me and I cwtched her tight and that was all very much better!
And now I am in my gorgeous new boudoir with cuppa, laptop, tv, phone, all my pillows and all my girlies safe and cwtchy :-D
Thanks SO VERY much for seeing me through this week ladies n gents, I hope you all know how tremendous you have been!!
Love You Lots xxxxxxxxxxxxxxxxxxxx

Eisteddfod to Ensuite

The weekend began with: taking Deri to the Cwmdu eisteddfod where age had 2nd prize for her Welsh poem recital - yay! Then she was whisked off to a birthday party so I went home and Pam n Jo came a-calling.
Sunday: Megz n Ben n Broni got up when I summoned them so they could help Move Bedrooms Around. Blimey, they worked hard and I tried to help but can't lift or carry anything much (as Deri said to me fri night when I wanted to move things -"should you be doing that with your bad cells mummy?" lol!) and mum n Bry thought THEY would do it but I didn't want them any more knackered so when they arrived armed with dinner they had a nice surprise! The rooms all look great and the teens are very pleased having a room each now!
Deri had been whisked off to Another party so didn't get squished by any beds or dressing tables etc and the little room downstairs us now my room - I have bed and huge sofa and stereo and tv and woodburner :-)
The weekend ended with: mum, Broni and Deri taking me into hospital to my ensuite! Deri says she will bring in a cuddly for me to keep me company :-)
Slept ok but my neck is so big and sore that it is getting in the way and I got quite pissed off with it this morning!
Well here is my breakfast so, I am off...

Stop!! It's Plan C actually! .... carry on...............

Went in today with my 24 hour urine sample and to have bloods taken, and to find out what time the new regime would be starting next week. But, last night, my armpit on right hand side felt tender. I thought maybe it was referred pain from swollen Lumpy, but thought I had better mention it anyway.
So then I had to be prodded and wait for a scan. A surprise bonus today!
Scan = nothing. Hoorah. The sister of the ward said during BEACOPP, one IV had to be given at 7pm and she lived locally, she would come back in to do that for me. How very lovely!!

Came back to work, started eating lunch; phone call - thought it may be the Doc from the Gwent with a biopsy appointment. Noo.
Sandra from my hospital: um, the radiologist assessed the drugs in BEACOPP and said they were very similar to ABVD, therefore, no point having BEACOPP. So.... I am Going In. BUT, not to Cardiff, they are going to do the treatment in Abergavenny. So, go onto ward tomorrow to sign all the paperwork, then get admitted Sunday afternoon/evening, get hooked up to chemo Monday morning, and then have a drip in all day every day Mon-Thurs, then on  Fri get fluids etc via IV, then go home Fri night if all is well, to collapse into my bed for a week or three. Then do same again in December; they will then test me after two of these delightful courses, and see what's what.

Soooooooooo... there we have it. After making some kind of strangled noises I kinda got round to thinking, actually, 5 days 'inside' is less complicated than going in on days 1,2,3,8 etc, and I won't have to try and smile feebly at my 7 year old each evening... I will obviously be fairly feeble when I come home after 5 days, but as I (probably) won't have to be taking anything at home, I will be less bleugh in some ways.
Also, as my little one knows where the local hospital is, when she is staying with my mum/mum staying here, she will 'know' where I am and so won't fret so much.

I don't know if I will be able to access internet much from my phone in hospital, so if you don't hear from me next week, I'm either in druggie coma and/or swearing at my phone :)

Plan B

So, I took Lumpy along to hospital yesterday, to have bloods taken, but when I showed them Swollen Lumpy they said ''No Chemo For You Tomorrow''. They took bloods, mentioned a more intensive treatment, said to go back today to speak to my own consultant etc.
Did that. I waited warily for the "5 days inpatient" talk. BUT - the consultant, Mrs PJ, and lovely Sandra, the deputy sister on the ward, sat me down and said they had come up with a plan to do a treatment for me on the ward, as an out patient, and the ward sister lives in Aber so had agreed to stay on half hour late on certain days to give me the last IV (has to be certain hours after first one etc), and they had given BEACOPP before but not on this new ward but wanted to try and help me without resorting to being an inpatient ... :))
OH. There we are then... it's onto BEACOPP for me! - I won't have to go in for 5 days , if I behave myself :))
So, either this Monday, or following Monday, depending on when I get my new biopsy (to check it is still Hodgkins and hasn't mutated), I begin the 21 days cycle. have drugs to take at home from day 1, but also come in as an out patient for an infusion (some will be long days) days 1/2/3, then take more pills at home, then back in day 8, then more pills at home,, and a few days of giving myself those jabs in my tummy then a week off everything, then start again. At least 2 cycles.
So NO work at ALL for me for at least 2 months, maybe 3!?! Wow. I will be highly susceptible to infection so no hanging round in centres like mine, or schools, or any large public gathering etc.
Much mooching about on sofas and beds then, feeling more bleugh, but kicking Lumpy's arse big time one hopes :)
Bit nervous. And sad to not be going to work. Glad to be at home for all my girl's birthdays! And if I want to avoid going in I have to rest and try not to get a fever and not get any infections ... so I do have to behave!
Hmmmmmm. Going to be interesting times, gonna need all my reserves, and a full drawer of spoons...

Birthdays, and 'spoons', and questions...

Deri had a BRILLIANT birthday yesterday (Sunday) ! :)) Cake and playbarns and presents, and just much fabness. Some great pics LOL!


Here's a link someone sent me, which goes a long way to explain how things are when you have a long-term and/or serious illness etc ...

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Then, another friend asked me about whether or not illness can cause isolation at all, in any way...

Hmmm....... isolation... on some levels, yes, absolutely. Because friends/family/partners etc can sympathise, and try to help, and be loving, and get upset for you, or feel helpless and try to be useful, but if they haven't got, or had, what you have, then none of them can ''be'' right IN there with you, they can't take it away for you, nobody can stop the occasional and out-of-the-blue grip of panic, or brief moments of sadness, or surges of anger at 'why me' that can appear ... I have now got my head around the fact that 3 cycles of chemo didn't magically make my lumps disappear, that it's likely to need 6 cycles. The other 5 day option they mentioned still freaks me out. And I noticed this weekend, that the right hand side of my neck seems firm and slightly swollen again... is that due to me drinking alcohol last Sat and this Sat night? Or is the stubborn lump playing up? Or is it just part of the process? Will I be ok in time for Xmas? Will I be weak and feeble over the holidays? If chemo continues through Dec, I am due the day before Bronwen's birthday - how crap is that?? I may ask if we can tweak the dates! How can I have no spoons available on the day of my daughters birthday? Fuck off cancer you bastard! And people will say, oh. she'll understand, and at least you'll be there even if you're in bed, and she won't mind, and we'll take her out for you etc... but, part of her WILL mind, because her mum will be poorly and I WILL mind because how fucking unfair!
And I have been positive, and thought good thoughts, and laughed at it, and stopped smoking and not had even a glass of wine since August, and eaten broccoli and tomatoes til they come out of my ears, and given up sugar too!
And having found the Macmillan website has been fabulous, coz everyone there is living with cancer and we make silly jokes and we KNOW what we all mean when we describe 'stuff', and we all cheer each other up with black humour, and it's really very useful. And then part of me feels guilty enjoying these conversations and new friendships with people on Macmillan (Macland) because my 'real world' friends have ALL been amazing! Nobody has been awkward or weird, they have all just rallied around and been SO supportive - I am LUCKY to know such top notch folk like YOU!! :))) I have been flooded with offers of support, help, assistance, shopping, childcare, food, hypnotherapy even! AND, another weird but very nice side-effect is that I actually met one of my Macland friends in person, and will do so again when we can both manage to be awake/mobile on the same day LOL!
It is the most surreal experience of my life. I am blessed to have you all. I am lucky that the cancer I am dealing with is not terminal, can be easily treated, that I have the personality I have too I guess, I am sure some others cope worse or better, but I'm doing ok so far!
But, I'm not brave. People have said that I am, but, I have no choice. I HAVE to get on with it! So I am. Some people have said I'm an inspiration. That made me cry. You don't know how much you can deal with until you're dealt your hand, you think??
I want to be well, I want to well soon, and I know I WILL be, but I can be impatient!! ;)
You know what annoyed me the other night? A chap I know from Glanusk, very nice in lots of ways, asked me how I was. I said I was doing well thanks. ''Good girl, that's the way" Good girl??!! I know, I know, he meant well, but really!?!
And, I'm bald, it doesn't suit me, I'm not cute or sexy or quirky being bald! I have a double chin, I'm curvy! And, my neck is still misshapen from the lymphoma. I don't hide, I don't usually feel self conscious, and I am sure most people don't give a sh*t LOL! But it screams ''cancer!'' , you can't pretend like you can with fibromyalgia :)

Does that answer anyone's questions?? :) I don't know, maybe it does, but it was a good opportunity to have a rant ;))

Oh, one more thing ....................... THANK YOU!!  Because, all my friends, old and new, near and far, are helping me get through all this so much more easily, and I will always be immensely grateful for that.

Xxxxxxxxxxxxxxxxxxxxx

2 sleeps til birthday madness!

Today I took annual leave so that I could de-clutter/rearrange/shift things/throw out/reccyle all the crap in my little sitting room that will soon be my bedroom/bedsit! :) Phew!! Knackered now but there is now room for my bed and once sofabed goes upstairs, my dressing table can do a swap!
Bron is fine now; she said that she wanted to tell the police to try and stop her friend having to go through it again, and doesn't mind if it goes to court. The cynical side of me says maybe nothing will get done, but my positive side thinks SOMETHING will be ;) Good news is that C is staying with her stepdad this weekend and maybe every weekend, and is not grounded and can come with B to D's birthday party on Sunday :))
Birthdays. 7 years old in 2 sleeps' time. Wow. This time 7 years ago I was 2 weeks overdue and very grumpy. At 4 am, everything went into overdrive and she was born 5 hours later with my gripping the sofa tightly with one hand and my ex's arm with the other! ;) Now here she is, tall and bossy and cute and very funny and sweet and loving... heehee!
Right, have a fireworks party tomorrow and crazy 7 year old stuff to do Sunday, best sign out and get some sleep. But first, may I say that today I was overcome with absolute gratitude and happiness about how damned lucky I am to know the people I do :)

How did we get to Thursday??

Bloody hell. Crazy week.
All geared up for taking small human bean trick or treating on Monday night, then heading home to light a Samhain fire. Sounds simple;  leave work, pick D up from friend's after school, zoom her to Jo's to get into her zombie costume (made by her 13 yr old sister), let a bunch of young un's scare locals and get high on E numbers, meet 13 yr old B and her friend C, all go home to mine.
get a call from B about 4 - can C stay at ours as had row with her mum? Yup. get to Jo's at 5.30, text from B, asking where I am, tell her, then 2 minutes later she and C barrel through the door with C sobbing and crying. Jo scoops up all small human beans and goes off - basically C tells me her brother beat her up and throttled her at her stepdads where they were getting changed, then her mum showed up (they are divorced now) and swore at her and B, then drove after them, assaulted C to point of C screaming and crying and a local resident asking B should he call the police (d'uh!!), and then they found me at Jo's. LONG history of C's mum having series of domestic violence relationships which kids witness, plus seeing her trying to hang herself.
I know.
I had to make an official call the next morning. B went into shock at school the next day, broke down completely. She's never witnessed stuff like that. And I think realised how often C DOES see it. She wanted to report it to the police. So they came over last night to take statements.
I felt like I was still in work. But glad I knew what to do.
So, Tuesday night, the party and the stress of Monday caught up with me, and I fell asleep putting D to bed, then came down and fell asleep on sofa again, then woke up at midnight and went to bed! Last night was not vastly different!
This weekend, neighbours (crazy loons who have random parties and bonfires and drink wine round them) are having firework party on Sat, as is tradition, which involves kiddies making and burning a guy, and adults getting rather pissed; Sunday, is D's 7th birthday!! It's the mad playbarn experience! ;)
Keeping in my thoughts everyone who needs cwtchs and love and then some for those who think they don't :D

From Woozy to Wahey

Friday was spent mostly asleep and feeling bit 'bleurgh' and wondering if I'd make it out to my friends' 40th on Sat - about 10 friends are 40 this year/month and organised a big 'do' at a converted barn with a band (my friends band from Cardiff but I didn't know they'd booked them until Dom in the band emailed me last week to see what I was doing this weekend!) and a DJ, who is a friend of our who's been DJ-ing since we were teens, and a 'rodeo sheep' ride and a bouncy castle... The very fabulous Mars drove me there - as I've been a bit peeky, and Mars had to drive back to Hull today (Sunday), we thought we'd pop along for a couple of hours and be home early.
I saw people I haven't seen for ages, some of them for 20 years! Dom's band (tribute Blondie band!) were fab, and our DJ was brilliant, and I did vodka, and dancing (with lots of rests in between!) and laughing and catching up and took pics and all of a sudden it was 1 am and me and Mars were agreeing to go back to Em's mums place (she had vacated it for the night) where there would be more music and revelry, just for a cuppa and home - erm....... we got back to mine at 4 , ahem!
I took 2 cocodomols immediately - but however many aches I was due to have, were all so very worth it because it was such an amazing night! Had so much love from everyone, and we all just chatted as though we saw each other all the time, and I did a silly dance with Tim and a bum-bumping shuffle with Nick and shimmied a lot with Mars and Ems and Ems and Claire and Claire (yeh the mums round here in the 70's had some favourite monikers obviously) and it was just what the doctor ordered - well, my doctor may not have exactly recommended it, but I am declaring it as an Alternative Therapy *grins*
I love my friends xxx

peering out from the fog

Well, the temperature has returned to normal, I'm getting to used to that ''freezing-then-boiling'' routine now!
Had a nice day, managed to light the fire, been curled up in front of it all day. Also started the day cautiously with toast, by 4pm had soup , whoohoo!
Had a call about going in to Usk House on the 8th to get assessed for my complementary therapies, yay :)) And a lady from there called me to ask if I wanted to see if I could claim any DLA whilst poorly...? She said she had seen my notes and could possibly get something due to the fibromyalgia which is probably exacerbated by the lymphoma ... ?? She did say that people with cancer find it difficult to claim, as the DSS (or whatever they're called) often say it's not the cancer, if it's not an obviously debilitating one, that's causing any ill effects, but the chemo/RT etc. Cheeky bastards!! Anyway, I won't rant on because I'm simply gobsmacked, whilst at the same time, not surprised, if that makes sense!
Bit headachy and sleepy so off to get some cocodomol .....

icky & sleepy

Oh here we are, chemo number 6. Possibly 6 more left, but will find that out after chemo number 8 when I have a CT scan to see if lumpy is still shrinking. Doc says however many chemos I have, I'll get a NHS bonus of some radiotherapy at the end. If plan A doesn't keep working and lumpy stops shrinking, we'll be back to considering plan B, going in to be blasted intensively, but she thinks plan A is going well so far.
Started yawning before even got home from hospital today, and collapsed on sofa whilst mum and stepdad pootled about doing chores and trying to talk to me and trying to tempt me with fish pie and not getting very far as was too woozy and vague. D was dropped off by Liz at 5, mum took her away at about 6, by which time I was feeling pretty crappy so that was good timing. Had time for a couple of cwtchs first :)
Felt the chill starting, and quite nauseous for a bit, so shoved heating on (too feeble to light fire) and huge fluffy dressing gown and woolly blanket and dozed off on sofa for a while... woke up feeling hot and thirsty, so ripped dressing gown and blanket off and rank orange juice an date sliced up tomatoes and cucumber and a slice of cheddar but think over did it with the cheddar.
So, possibly 6 more of these eh? Best plough on and get those positive thoughts up a gear... :)

Spot the error

 Today, I had a lie-in until almost 1pm!!! Oh my goodness that felt good! :)
I thought I'd have a quick coffee and banana then pop out quickly to the shops for things we were short of... so.... I drove to the local village, only 1 and a half miles, to buy milk loo rolls and bread, got back in the car, tried to drive off, but off side tyre completely flat?! So had to call my rescue recovery fellas as my spare was also buggered (moral of the story...?) so whilst waiting went and had coffee with P who had nearly finished work, then got to sit in a big truck which took my poorly car to that garage That Fixes Things Quikly and my little 10 minute trip out to spend a fiver took me 2 hours and cost £105... hurumph!

On getting home, cheered us all up by doing chicken roast (mum had dropped off a chicken yesterday) and warming up mum's home made apple pie :) I didn't fancy pie yet so tucked into the choc/raspberry/chilli pud which Em brought round yesterday - wow! taste sensation :)
P is coming into town tomorrow to do shopping so as I'm working, we'll meet for lunch, yay!
The ducks are tucked up, D had her PJs on, time for bedtime story then curl up on sofa with blanky methinks............

Feeling the lurve

Thursday night brought tipsy declarations from P ... I did a mini survey of friends and asked, do people say what they really feel when tipsy or not? The vast majority said yes, people do. So, I'm still smiling ;)
Had a wonderful lie-in today, followed by my gorgeous 13 year old bringing me a cuppa in bed before heading off to Cardiff to do the cool things that 13 year olds do in cities on weekends... :) She returned sober by the way ;) As I lay in bed th elovely Lynne called so had good catch up with her too.
VERY excited to day as Em who is currently living in Sri Lanka but over for a few weeks was coming to visit...one of my best friends (of which I am lucky to have many!) but as she's hardly in the UK it was fab to see her in person. She managed to be Super Woman as she brought lunch, cooked it, washed up, cleaned and rearranged my kitchen AND managed to hug me too lol!
I managed to give her a surprise too - as Em and Em M and lots of other friends are all 40 this year and having huge gathering/party/celebration etc next weekend... as I was waiting for her, Dom emailed me (photographer/musician/kinda journalist friend lives in Cardiff) to ask what I was doing next Sat night - I thought, oh no, he's coming down from Cardiff and I won't be here! I told him I was off to a party. He asked where - off, I thought, as he doesn't know the area well - told him - he announces his band are playing there and he was going to take me a pretend roadie so I could get a night out and chat to him, but I'm going anyway and he's thrilled!! I was amazed and very happy too! So I said to Em - that band you booked, I know them! Hah, small world :) So, next Sat, my fab friend Mars and her lovely hubby will be down from Hull and are kindly driving me to party, then we get to see people we don't see often and some of them, not seen for 20 years! - and get to hang out with my friend's band! Hoorah :)
D was dropped off at 4 and talked Em's head off and made us laugh ... then after Em left we drive off to *sssssshhhhhhhhhhhhhhh* pick up B's birthday pressie - new guitar!! and then pick up B from train.
All day I have felt non-nauseous - hoorah! And no bad back ache - double hoorah! Also had pot-belly stove lit all day and evening and it's toastie warm :)
A good day xxx

Small lurgys, big lie-ins

Wednesday night saw D having her turn at the bug that's been going round her school, so Thursday morning she spent curled up on granny's sofa and I took half a day off and cwtched up with D on our sofa in the afternoon.
Then later on we were told there was no water at the school that day and unlikely to be any there Friday - but today I did have LOTS to do at work so good ol' granny came to the rescue, which is particularly fab because tonight is D's regular sleep-over night at granny's too. But the lurgy had gone and my queasy moments had disappeared too, so we both managed a good day today :)
As D was away, I ventured out for a whole one and a half hours to see Jo and Nick, whilst awaiting my free range 13 year old teen, B, to finish at 'youth club'. Had a fab catch up and Jo had baked us some cakes to take home :) B showed up slightly off balance, this was due, apparently, to the gang sharing some strongbow. . Hmmmm, having been through free range teen M already, I feel slightly better prepred to deal with it this time, plus better at taking the p**s out of them too ;)
So, bed now, to fully appreciate my lie-in tomorrow morning!
Nos da xxxxx

Results day, sort of...?

I saw some fit firemen in the firestation gym, which momentarily distracted me from the training course... then I dashed off to get the hospital for my Boob Tube Flush and the results.
The consultant told me that the PET scan showed the lumps had disappeared apart from the one on the right hand side, so the chemo is working but I need more treatments ... so I will have 3b next week and then likely to need 4a and b too - at their team meeting on Friday they will discuss radiotherapy. But then she threw in this little gem - one option, rather than current chemo and radiotherapy, would be to go in as an in-patient for 5 days for intense chemo... she said it's not known yet, until discussed, if this would give a better long term prognosis than sticking with original plan, plus the side effects and any risk of infections would be more severe.
That stopped me in my tracks I have to admit.
I said that I didn't want to do the 5 day thing unless it was a matter of life or death. She said it wouldn't be. I also said that what would I do with my kids whilst I was in hospital? I said my mother would offer, but that she was 67 with a bad hip, one lung and uses a nebuliser, my stepdad is 72, and my 6 year old wouldn't sleep.... the consultant said my views for treatment were as valid as anything else and she would tell the team on Friday what I had told her. She said I would be less likely to die from the side effects of plan A than plan B?!
So I'm feeling a bit weird. The chemo is working, but I'll need 8 not 6 chemo's and the consultant  thinks dropping a 5 day stay into the conversation is fine - why that suggestion? Is the lump a serious lump, too stubborn? Or does she think an intense blast would be better??
So I should be really pleased but I feel a bit confused and there's nothing more she can tell me until next Wednesday.
So, I dunno ... hoorah for lots of lumps having gone, and , erm, um, oh, for the rest! 
Here's to kicking it's arse even harder and shifting any remaining naughty lumps ASAP! :)

Paint and cheese and more scarves and scary satnavs

But, not all at the same time :)
Well, trying to put a scarf round your head can get quite tricky when your arms are so much weaker and the scarf slips and by the time it's in the place you want it you can't tie it up straightaway because your hands and arms are aching... oh yes, mornings can be creaky anyway with the fibromyalgia, lol! So, I can't afford to press the snooze button on the alarm clock anymore as I really *need* those spare ten minutes!
Today my madly lovely mum and stepdad started painting the chimney breast in the smaller room downstairs which was a spare sitting room but is being transformed into my bedroom...my  free range teenagers cannot share a room anymore!! And I am happy to create my own bed-sit downstairs with bed, sofa, music system, tv, and woodburner :) Anyway, it's a lovely deep red, get me with my feature wall lol!
I ordered my online shopping last night and salivated all day waiting for the cheeses and houmous and pate to arrive.....nom nom nom! Just stuffed our faces with nice bread and all those lovely things.... boursin, gouda,, vine tomatoes sliced up on top - *contented sigh*
Tomorrow I have to find my way to Caerphilly fire station to their meeting room for Freedom Programme training (and NOT at all thinking about any firemen I may see there - although there may be a theme emerging here this week...) so I have borrowed stepdad's satnav .... just programmed in the postcode etc and the 'man' told me to turn around as soon as possible...... whoa, I'm sat on my sofa, he's a bit keen!! Let's hope he's as eager first thing in the morning eh?

Yays and Nays

Loved lying-in, stil feeling blissful from yesterdays hypnotherapy -  apart from having to turn my phone off as D tried calling me at 8.30am to see when I'd be turning up at nan's ;) - I didn't answer it, listened to voicemail later hehe!
Poor D has been a bit anxious now and then. She wanted to know if she could get get ''bad cells like mummy'' ... because she thought the tubes would hurt her much more than me :-( Poor thing obviously thinking about it all ... I had to lie, which I try not to, but in this case I had to protect her, and say no, she couldn't get bad cells like mummy - how could I say ''oh yes, anyone can get them'' and then let her fret ?? So, it was one of those times where you balance out benefits of which facts are going to help! Bless her. Bloody cancer, fucking with everyone one way or another. Well, it can jolly well Fuck Off! :)
Today has been a bit back-achy... so been taking lots of co-codomol and ibuprofen. And eating Viennetta. I don't know if that's officially suggested for aches, but as a lesser-known South Walian remedy, I can recommend it... ;)
I have two Big Parties coming up, and wondering, if the doc wants to go ahead with 3b chemo, if they could tweak the date... I have talked to others who have managed this, so we can see :)
Well, back to work, Monday morning n all that tomorrow, I shall go armed with painkillers for the back and drink lots of coffee and smile nicely at the head-tilters from CAB ;)

I went to my happy place ;)

Well, D looked very sweet today - ballet was not a lesson but a photo session so they all had to pose, which she has NO problems with! Dropped the pink princess off at her nan's and met up with Lynne for our Coffee-Putting-Universe-To-Rights session ;)
My friend Mike (Trish's Mike not Mars' Mike), who is a fireman, a druid and newly training NLP practitioner, has also done a course in relaxing hypnotherapy, and asked if he could come over and try it on me. Oh YES! What good timing! Just as the whole treatment thing was beginning to drag, the nausea is nudging me more annoyingly, and I was losing my mojo a bit, here was a stunningly wonderful session! I loved it. I totally melted, relaxed, zoned out, saw colours and images and felt fabulous afterwards *Big Grin*
This evening, as all kiddies are sleeping over elsewhere, I am on sofa in PJs, with my very own mini chinese takeaway, pint of orange juice (no vodka in it yet!) and crap tv, then early night with a book.
Life throws so many weird things at us, and it makes us sink or swim.... I'm off across the Channel!! ;)

Woozy times and wig days

I was a bit too woozy to type much yesterday. I told my dearest mum that I was going to sleep all day, so what did she do? Come round twice LOL! Then said, you look tired ... ? Anyway, she was dropping off food so musn't grumble but I did really just want to sleep! ;)

Today, I had a midday appointment to pick up my wig. Mum offered to take me but to be honest she's done enough and, to make me sound more ungrateful, I'd seen enough of her this week and wanted to save more tilted-head-ness for lunch on Sunday ;) I KNOW she is there for me and I am lucky to have her and I am well looked after, but I sometimes get over-whelmed by everything, and sometimes get over-whelmed by her too, she is very intense, but I still love her lots :)
So, I was planning on dropping D at school then dozing on sofa and setting alarm to go to Usk. Before I took D, K sent me a text saying she was off today and wanted a catch up if I was up for it, so I said I had to go to usk and she offered to drive me which was fab coz I was/am knackered really! So (after my nap on sofa followed by visit from E next door with a crystal to hang in my window to reflect the light :) ) we went and got the wig - very nice and good colour and good fit - but - it just doesn't *feel* right! So I said thank you and wore it to the coffee shop but didn't like it still, so took it off in the car and put my wrap on again :)
I showed it to my girls and M said 'what do you think?' and I said I don't really like it and D said I should wear it coz she doesn't like me bald so I let them feel it and then even D said, hmm, we see what you mean LOL!
Still feel a bit in limbo as have to wait til next week for results. It's ok for ''them'', it's not their lives/health on the line! Anyhoo, could be worse, so plodding on. :)

Hurumph#2

Had chemo #5 ... but the Heath hospital didn't get it together to send results in time so I won't know til next Wednesday when I go in for the Boob Tube Flush - hopefully!!
Sat with high temp and lots of cold orange juice feeling bit disappointed but hey, no news is good news n all that jazz ... :)
Currently the plan is to complete cycle 3 (had 3a today - no, they *can't* call them 1,2,3,4 etc!), possibly 4 depending on results... then have assessment at Velindre to see if need radiotherapy - the final decision will be made at a team meeting on the 21st. . . so may get away with stopping at 3 cycles, will know by time go in for 3b.
Bit hot and bothered so off to lie down again :)

''R" day tomorrow ............

I have felt a bit off today. Maddening backache has not helped! Bit nauseous. When I went for my  bloods today I mentioned it to the nurse and said I had actually felt a bit more ''icky'' (dontchya love my technical terminology??) for about a week so she said tomorrow when I go for chemo #5, I can ask the doc for stronger stuff. Yippee! Also, the injections I have to do are getting more painful... it seems I getting more sensitive to pain, whether bangs, bruises, scrapes etc....
But at work, had good stuff happen as the counsellor #2 came in to confirm her starting date, and someone called in to enquire about using the centre for a food bank too, which is fab for us all! *grins*
So................................................ results day tomorrow ................ keeping  digits and appendages crossed!

Glow in the dark...........

Well, no cancellations today! Arrived at the Heath hospital on time ready for PET scan! Although my mother demanded a complaints form as some chap from Lincolnshire arrived 2 hours early for his appointment and was allowed to push in and was called before me so mum turned all rattlesnake and got me in at same time lol!
So ... sitting with a book, even a really good new one, for 90 whole minutes, waiting for the day-glo dye to travel around my body, is damned tricky! Just as I was getting a numb bum and losing the plot, they called me in! 25 minutes and a backache later, I was released! And I dragged my poor mum full speed towards the cafe (much more posh than Nevill Hall !!) as I wasn't allowed to eat this morning and I was ravenous!!
Leaving my mum and her complaint form at her house, I went on to have coffee with Jo and a good ol' catch up before picking up various sprogs, although I had to wait until 5.30 as I would have been radioactive before that and wasn't allowed near small sprogs or pregnant people!
Had a text from Sascha, troll bead bracelets are being looked into :))
So, roll on chemo#5 and results of the PET scan on Wednesday................

Happy tears

Had a most delightful text message from Sascha today - her daughter (she is a pupil at the school I used to work in where Sascha still works) has had a collection for me at the school!! And they want to know what I would like!! How sweet is that?! I was too gobsmacked and goosebumpy to think about what might be nice ... Sascha asked if I'd like a tattoo, but I don't know if I am brave enough these days ... I have 4, and have pondered on another ... hmmm. It's either a tattoo or a nice necklace/bracelet I think, coz I thought of a massage but then I wanted something to keep if the kids at school have gone to the trouble of collecting for Miss Bev ;)
It's made me grin all day :)
So this afternoon two of my best friends met for the first time! Lou and Lynne, in the same cafe, with me! We had a hoot :)
Deri was dropped off about 6 by my fab and loopy mum and stepdad, high as a kite on haribo lol! We had a nice natter and cwtchs before bedtime story. She's planning what she wants for xmas! I reminded her she has a birthday before that ;) I decided to get rid of a pile of books and old letters that were cluttering up my kitchen worktop so books are on the bookshelf, squeezed them in, and the bread machine (that was hiding on top of a table), and the slowcooker (that was squashed between the cooker and toaster) are now next to the fruit bowls because there is much more room... :)
So, lunch at mum's tomorrow... yumyum!

Making some plans but not others

Missed an entry last night, as I went to the PTA AGM. Wow I know how to party! :)
So I've been busy in work, arranging meetings with people who want to form links or hire our rooms etc, and some fun stuff such as planing the Xmas Fayre Fundraiser. I DO like my job, and feel very lucky that I do!
We have booked a holiday for March, as I am hoping that all treatments will be well and truly over by then. BUT that little bit of insecure doubt that cancer throws into your life is being annoying and occasionally tweaking my brain with ''what-if's'', although the positive part of me (which is usually most of me!) says 'hah! as if' ;)
Also, a group of my best friends are all getting together to celebrate being 40 this year... having a big party 3 days after chemo # 6 - I will go along, but I'll be tired lol! So can't really plan whether I can go in the coach, as I may want to leave early, but I'd rather not drive, and Mars is going so she might drive me, and that's fab. It's just frustrating that the treatments get in your way lol!! I am grateful that things are going well, I am, but you can't help but grump sometimes!
The 'Big Scan' is on Monday and the results should be back by Wednesday on chemo # 5. Here's to Good Results.......................
So this evening the fire is lit, little 'un is at her nan's, lie-in in the morning and sitting in cafe with Lou tomorrow :)

bristly?

I have just shaved all my hair - well, the sparse tufty bits that were hanging on - off. I borrowed a friends hair clippers. How weirdly liberating in a arrgghh I'm bald isn't it quite amusing in an odd way!! :D

We got the new expresso/cappuchino machine working this evening - no LM, it's NOT red and shiny like yours, its black and shiny, which I guess matches the slow cooked Hehehehe! - and it's very fast! No more lurking waiting for the cafeterie  (sp?) to brew and plunge it etc if you fancy proper coffee....unless you have time to spare it does take ages, and now I have another coffee option - as I also have one of those little French coffee pots you put on the stove to boil, so we are now fully equipped for any coffee emergency lol!

Well, I  have my buff on round my head, let's see if it stays on all night, it's a bit nippy.... xxx

Cooking? Nah, hippy rambling......

Catering must be in the air - picked up a free Delonghi expresso/cappuchino coffee machine today from the fab Freecucle :)

I've been veering between wanting to be treated as normal with no fussing to feeling slightly miffed at some absent folk ... now, there are not many of them I must say, just one or two, but it's all about lessons for us all, and some paths are not going to travel along together all the time, eh? :)

Along the way, over lots of years now, I've been blessed with some damn good friends, old and new, so ... thank you all :))

So, off to experiment with coffees and cookers and be thankful for all the good stuff and all the bumpy stuff, coz that bring more good stuff if you listen hard enough ;)

Roller Coaster

This morning I nearly gave up on having a bath. Why? Because I'd have to to make sure it wasn't too deep and wear a necklace to tuck my tubes into and even then wash very carefully to not get too much of anything medical very wet... and I was tired of feeling knackered and I was all grumpy and feeling sorry for myself (no, really?! I hear you cry!) ........
So I lay on my bed and read a book (reading a fab one right now called House Of Sleep) to ease myself into a different mood... and then got up and said ''no way is this getting me down!" and enjoyed a very nice bath and laughed at all the bits tucked in and not getting wet stuff :)
Progressive tiredness is what it must be eh? Was warned me about that, thankfully I haven't been vomiting etc, of which I am very grateful!
Went to my mums for lunch which was very nice but I wasn't really 'there', and then my lovely stepdad gave me a gift of ... a slow cooker! Um, it's great for cooking red meat in but I only buy chicken, which needs to be added later, so maybe it will work out ok if the veg is all cooked during the day?? I have no idea, being kitchen-appliance un-savvy! ;)
Needing more sleep now...............

Friends

So, Fri night, Mars came over :) Had a lovely pizza and a lovely natter :))
Saturday, today, started with a long lie-in, and then me and Broni flopped about in front of TV together, and then Em came over for lunch and a natter which was very lovely... :)) And then Deri came home (than you mum for having her overnight & all day tpday!!) and we had cuddles and leaping around-ness (not me tho!) and bed-time stories and then Broni and me watched Dr Who but I can't say what happeend coz then Mars was coming over and she hasnt seen it yet! ;) We had another natter and watched a DVD and that was ALSO very lovely :))
What a great weekend so far!
Thank you everyone ;)

Naps and harvests and visits

After Deri went to school yesterday & today, I went to bed again. Today I got up at 12, went to post some letters and went to see Deri's school Harvest play at the church - which was very sweet! The lovely Martine came over this evening - with delicious pizza! I had a nice nap on sofa afterwards as didn't quite get to bed and dozed off instead! Ahem.
So thought I'd be very naughty and catch up on the diary. Off to snooze again now as Deri at my mums so can have lie in and then wait for Ems to come over for lunch! I am enjoying my relaxation days :) AND.... loving my fab friends!

Hair today, gone tomorrow?

Well having checked my hair from all angles by using 2 mirrors, I can see that it is so patchy it's going to have to go!

I am wearing a ''buff'' that Pedro donated at the mo, and going out for lunch with mum and Bry in a bit so may try my jersey hat too ... and then borrow some clippers and have to go for it ... oh blimey, kinda looking forward to just getting rid of it and kinda wondering how weird it will be!!

Thankfully temperature is behaving, and had a lovely surprise this morning when Kerry was free and popped over with a bun for a catch-up :)

See what the lady from Usk House has to say later re: which therapies I can have! :)

Chemo#4

So after getting PET scan postponed until the 10th, off I went to Nevill Hall for chemo #4. Jo came to chat with me during the last hour :)
My ''positional'' hickman line played up so I wiggled in chair and flapped some arms etc and then discovered that if I pulled my shoulders back, it flowed freely lol!
So I sat with correct posture and nearly offered to balance a book on my head... ;)
Back home and at abouy 4pm felt myself getting cold and shivery - aha I thought, it's going to be a high temperature type afternoon. So wrapped in PJs, fluffy dressing gowna nd a blanket, I lay all light - headed and woozy on the sofa. Then 2 hours later I was BOILING and had to sit in my vest! Have been taking my temperature every half hour and drinking lots (no not the gin) and it's back down again. Couldn't eat lunch either, felt too woozy. Have just had a cuppa and a slice of mum's home made cheescake and beginning to feel more normal.
So, PET scan is now on the 10th as I said, two days before chemo #5 - the doc today says they will continue with the course of chemo (6) whatever the results, as even if the lumps HAVE disappeared, finishing the course will obviously help etc. Who's keeping fingers crossed that is WILL only be 6? ;)
Tomorrow Dinae from Usk House Hospice is calling in to discuss my free complemntary therapies options! :D Very excited!
And if I'm feleing ok, I may go out for lunch with my muma nd stepdad, but I won't if feeling slightly wobbly as last time it wiped me out!

Glow in the dark

So tomorrow, I go off to the Heath (rather be swept off by Heathcliffe but you can't have everything) in Cardiff For the PET Scan (nope, no ducks or dogs will be involved) to be injected with glow in the dark stuff but instead of throwing star shapes I have to sit perfectly still for 90 minutes. . . so I'm taking a book!! I can't have anyone sit with me as I'll be very radioactive so I guess it's another opportunity for chilling out with a book eh?
After 90 minutes they then out me in the bigger version of the giant polo I went in for the CT scan, and lie there for 20 mins. By then it'll be lunch time and I'll be ravenous! I can't have physical contact wirh any young children or pregnant people for 6 hours after being injected so good thing Deri is at her friend's for tea and her mum with bring her back late by which time I'll be huggable.
Then, hospitals are not done with me, because on the way home I have to pop in to my local (still no G&T's yet) for bloods to be taken ready for Chemo#4 on Wednesday.

Now, I am hoping that the possibility the doc mentioned will be a reality when I get my PET results... ie: that if the lumps have shrunk quickly enough I will only need 6 treatments. I am aware that the reality could be anything too. So, another waiting game... grrr to waiting LOL!

My hair. Well, instead of just falling out, it's thinning on top. I have a fringe. I have hair at the back. The bit in between is pathetic! Thankfully, being a full-blown hippy (see previous blog) I have those hippy hairbands which can be worn wide or thin so they are currently on 'fairly wide' mode ;)
So I'll take my weird hair (says the girl who used to have red dreadlocks in a previous life) and go and glow in an unsociable non-touchy way and then have more blood extracted and then maybe just lurk on the sofa with cups of tea and blink a lot ....................

Sofas

Well, yesterday all I did was drive to drop off my middle free-range-teen at the train station, and then pick her up again later. My youngest was picked up for ballet and taken to the milkshake bar thingy then back to her friend's, and my eldest was at her b/f's, so I practised what I have been preaching, and SAT ON THE SOFA ALL DAY *looks proud*
I watched Discovery channel - Animal Cops rescue and Monkey Life Sanctuary LOL! and bid for some shoes on ebay. Bliss ;) I only got twitchy once or twice and kept reminding myself that this is what my body needs so help get better, and it was nice for a change to just zone out and not use my brain very much!
This morning I am back to jabbing myself in the tummy again for 3 days leading up to chemo #4 (2b) and trying to stop myself thinking about the results of the PET which I haven't even had yet! It's next Tuesday and I'm hoping it's all going as planned!! Occasionally I find myself imagining all the 'what-ifs' and going through all the possibilities?! I do try not to but now and then it creeps up on me and then I find myself doing that and have to shake myself out of it! I usually just have a word with the lumps and say 'yeh, you, buggering off now are you' and visualise myself lump-free etc ...
Today we are off for lunch at my mum's, tomorrow my mum and stepdad are painting the bathroom! It's been interesting because often when they helped out it was attached to a condition of some sort but since having cancer they are just offering unconditionally. I know our lifestyles differ and they way we keep houses differs and they can't understand festivals or ''weird'' music and taking my kids off to look at stone circles (did I hear someone shout ''hippy'' ?! lol) so they tried to help me a single mum but pull me into their way of doing stuff and that never worked so there were sometimes clashes.... but all that's gone now which leads me to think that some good shit is coming out of this cancer stuff too. Or is that just me? *grins*
And my poor friends... usually they have me chatty and bubbly for long periods of time and now it's in short bursts... oh, wait, maybe that's a GOOD thing for them? :P ... but sustaining a conversation is tricky these days even when you don't think you're feeling that tired, you realise you are actually quite knackered and can't keep up a chat which you were looking forward to. And that's quite annoying!
At work it's not too bad as everyone is busy so there only short snatches of chat and then the rest of the time I'm busy emailing, organising etc, or taking referrals, in person or on the phone. Some of these can take time, but because it's all about THEM and you're busy listening and planning what's best at same time, it seems to work out ok, and if I do feel drained afterwards I can go make a cuppa and chill out for a bit :)
I'd better go and get showered and dressed now then otherwise I'll be turning up for lunch in my pyjamas! Keeping my fingers crossed for my ebay shoes!

Head Tilting

So, went to see my GP, the nice man that was a bit too blase about my lumps in my neck... he had asked me to go in, and was very head tilty and ''it's always difficult to know how concerned to be about lumps" type chat. I have him The Look and said 'yes and I'm glad I came to see you when I did and asked for the referral and once I'd been to hospital things moved very quickly...' and decided I'd leave it at that as he was trying very hard to be helpful and offer support etc...... I told him about me calling Usk House re: complementary therapies and he said there are 2 Macmillan nurses there too. I left then with us agreeing that I'd call him if I needed anything.
Back into work then where I did lots of emailing and started planning a Xmas-y type fayre at the centre ( I KNOW!) and then bought a nintendo ds lite on ebay for my 6 year old's birthday which was nearly half price with lots of free games so let's hope it is working ;)
Last night I roasted a chicken so today had some in sarnies for work and last ight made the rest into a casserole with broccoli and yellow peppers and celery and garlic :D ... So had some of that this evening........ NomNomNom! It will be soup tomorrow............... but do I have that before or after the crab fishcakes my mum made ... ?
Now I am starving LOL!

I'll have another appointment please

So today I had another appointment. Well, why not, not like I have anything better to do :))
It was a meeting with the cancer team  psychologist. The nurses book you in as routine and then they see you regularly if you're not coping well etc... we had a good natter and she said that often she is contacted by patients after the treatments finish as when there's nothing else happening some people feel lost... we agreed that I was doing ok for now but I can call her any time to meet up if me or my kids are upset etc. Fab :) Nice to know how much support is out there.

My GP appointment is tomorrow. PET scan Tuesday followed by calling into my local (hospital not pub these days) for my bloods ready for my chemo appointment ... where do you fit in just being then? ;)

AND, I called a local hospice and support centre to enquire about their complementary therapies for cancer patients and a nice lady called back and is coming to see me next Thursday to fill in forms and take notes etc and then book me in for whatever therapies are most appropriate ... yay for being spoiled! :D

I am hoping that when I get PET results they say in a jolly voice "oh there we are, only 2 more chemos for you!" yet am aware it may need to be more so  keeping fingers crossed! ;)

xxxxxxxxxxxxxx

PETs, not small furry ones though

Today I mostly ate cupcakes. For charity of course :))
Went and had Boob Tube flushed. Kay the nurse managed to get some blood out of it today but only by me standing up, taking deep breaths, then coughing then swinging my arm around. Which was needed after those cupcakes I expect. Saw Gwen the non-stop talking lady there (did I not mention her last week??) who told me all about her sandwiches from Waitrose. :)
Got home to my bathroom taps having been fixed by Ian Glanusk Fixing Man. And my mum having ordered a shedful of logs. Huzzah! And, a letter from GP asking me to go in and see him. Guessing its about my diagnosis and him wanting to catch up. He has some catching up to do! And then a phone-call from the Heath hospital in Cardiff, saying my PET scan is next Tuesday! 10am. Once I'm injected with radioactive stuff I have to sit as still as possible for 1 and half hours, so taking books! Then I get scanned in a bigger version of the giant polo I went in when I had the CT scan. Then I have to avoid physical contact with children or pregnant people for 6 hours from start of injection, so can't hug my kids immediately after school :( Then, ta da dah... waiting for results , again!
Then, I went to a public meeting with some weirdos from the council who did a very good job of pretending to listen to us parents about why they must NOT close down our kids' primary school... dunno what I said but the local journo came up and asked me and Liz for our phone numbers  -  uh-oh! ;)
Now..............bed... sleep. yum................. xxxxxxxxxxxxxxxxx

Take away wigs?

Having missed a day's diary due to internet shenanigans, I'll try to remember two days worth of stuff!

Yesterday was spent at work setting up for a fund raising day today, I did lots of delegating and folding up of tombola tickets! I then went to the wig shop. I was prepared for feeling all sorts of stuff, but I didn't feel emotional - is that due to growing up with a mum who owned a hairdressers, so lots of 'heads' with hair pieces and wigs on was the norm..? I dunno. But anyway I tried not to laugh at the quite frankly silly wigs, there were one or two ok ones, the young woman doing the consultation was lovely, very professional, so if you were feeling weird I'm sure you'd be put as ease ... I chose one nearest to my new hair do, it's on order, and bought a jersey head-wrap/hat thingy. It'll keep my head warm in the winter ;) Especially as the hair is getting thinner, particularly behind the fringe area...
I also lit the first fire of the year indoors in the pot belly stove - toasty warm! AND, I fancied something *not* plain to eat so bribed my teens to clean the duckshed in return for a chinese takeaway! So first I had to stand and direct them to teach them how to do it, and they did very well in their wellies and gloves :)) So then we sat in front of the fire with our feet up and scoffed the takeaway and watched Scrubs on tv!

Today the 1 year anniversary of the centre was celebrated by raising funds for Breast Cancer and Jeans for Genes and I planned it before the chemo started or had  a diagnosis so all I could do was ''direct'' and everyone did me proud and there were fabulous home made cakes and teas n coffees and despite the drizzle , in 3 hours we raised £170!! :))
 Despite trying not to do much I was on my feet a while and my back is telling me off but we all enjoyed it!
Home to another fire and loaning out my laptop for German homework & psychology homework ;)
Am quite knackered so will claim an hours' TOIL tomorrow after the hospital appointment and go home early. A good plan methinks...

Did I mention the Ducks?

Well, nice long sleep with no weird dreams, ok, rephrase that, no gory dreams, as mine are always a bit odd, its the nature of dreams isn't it?
I was rearranging a house with an ex, although the house and the ex kept changing,  and setting up a stall selling clothes and food in the market. And why not? :)
AH yes, ducks. We had 7 to begin with, they were a 'rescue'. They roam freely in my mini field all day, and tucked up in their duck house (which was a present for my 40th birthday from my mum) at night. But, we have lost 3. Fox? Nah, they kill all of them at once usually. We have lots of mink round here, and they tend , my farmer friend tells me, to steal one at a time. So, we are down from 6 or 7 eggs a day to 3 or 4, and recently down to 1 or 2 .. I thought it was down to the season or something else random, but having wandered the field last week, found little 'nests' dotted about with eggs which will now be 'off'. So, less for me to sell at the local deli, and less for us to eat! Trouble is, having left the back half of the field to be wild, I cannot get trough it to check for any eggs at the back of the wilderness. Dammit! These ducks are too cunning for me!
Wish I could train my dog to go find the eggs and carry them to me! Don't laugh, my farmer friends daughter HAS trained her springer spaniel to do just that for their chicken eggs - if he delivers them to her without dropping them, he gets biscuits! How fab is that? Will she hire him to me?!
Now all that is fine and dandy, the sack of food costs £6 and last 2 or 3 weeks, plus scraps from us, so they don't cost us really, but the issue now, since I'm all "ill and feeble", is the ...
Mucking Out Of The Duck Shed.  Hmmm. Teenage girls are NOT tempted. May have to resort to bribery. I do have friends next door with lads of 19 and 25, and am thinking of recruiting them too!

*waves feebly*

Good evening guys n gals.
Woke at 8am, didn't really get sleepy enough to go back to bed, decided to drive out with my 13 yr old and meet Lynne for lunch, that exhausted me so had a good 3 hour nap when we got back!
I am not feeling worse each time after chemo, but I am feeling progressively more knackered! My two days off afterwards MUST be just that, keeping visitors to a minimum and not going anywhere, get myself ready for the Monday back at work ... and so, back to the sofa!

Yawning again??

Well, all that having fun with visitors proved too much for me as I have been unable to do anything except nap until I had to pick Deri up from school at 3!!

Must remember that the steroids and antihistamines mask the tiredness somewhat the day after and next time not do very much (see, I am learning!)

Zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz...........................................

resting, spoiling, yawning...

Well, started the day by lying on sofa in PJ's after Deri getting picked up for school, had a nap and then Jo came over and made me coffee, gave me a pecan danish and washed up :))
Then mum called and said did I fancy lunch out? Ooh yes! So P met us and we ate at the Bear. Yum. Then home for nap before kids arrived home, and A arriving in her new camper van from Hereford to have a catch up.
She brought a bottle of wine, and I drank half a glass - oh yes, I am living the high life I tell you! ;)
Nice nice day, just tried not to yawn on everyone's faces lol! I did yawn a lot, just something we have to get used to ;)
xx

a stitch in time

Well, it all went well until they tired to get the stitch out from the Hickman line op thingy and a bit of it was stuck to the scab so it pulled - bit *ouch* - two nurses, a very small scalpel and a bit of wincing from me...  but we got there in the end ;)
Feeling WOOZY from piriton etc, but picked up afterwards by stepdad, mum here all afternoon to make me cuppas and cooked dinner when kids got in, so lolling on sofa is all I've done and all I'm going to do until I go to read my little 'un a bedtime story :)
Thank you all for your lovely hugs and best wishes, I think they're working ;)
xxxx

Unco-operative piping

So went for bloods today. My 'positional' tubes which have caused a little difficulty before played up big time today and they had to resort to taking bloods from my arm as none would come out from the tubes, despite them asking me to put arms above head, try coughing, deep breaths, lying flat, standing up....... NO said the tubes! Then the nurse tried removing the stitch (the 3 weeks since having tubes inserted is up... REALLY??) but it was partly stuck to the scab so when she pulled............ OUCH! I wanted to cry even though it wasn't THAT painful, but the wibbly bit of me was threatening to come out again ;)
The deputy sister asked if I was ok as I didn't look as perky as usual and asked if I had had any more upsets since last Monday, and I said yes, on Sunday... she said she thought so and had I booked to see the psychologist yet? She's a canny lass ;)) I originally asked to see her so I could refer the kids but I think I may need someone neutral to 'vent' to as well!
Bumped into the local lady with breast cancer today - scarf wrapped round her shaved head - had a chat about a foot in both worlds, normal world and cancer world, about how you have your head around it yet you don't ... good to touch base with someone who can relate :)
So, if no phone call to say bloods not up enough, its chemo #3 at 11am tomorrow. Got a new book that Sascha has loaned me........

wibbly wobbly

Having a little sob on the phone with P and then chatting on phone with lovely Lynne cheered me up and I went to bed happier, and also didn't have an odd dream for a change. Well, actually, my dreams are ALWAYS vivid, but recently they have been bit gory too. I think the shock and the physical stuff/being manhandled etc is coming out..?
Anyhoo, woke up feeling a lot brighter this morning, can feel the little wibble just under the surface but am partly putting that down to the FULL MOON this evening, had a nice quiet day at work and as I am excited about CAB leaving the building soon ( I should explain that at some point!),  made a provisional plan in my head as to how I would rearrange the teams, rooms, etc! And during a quiet hour, I started planning Deri's birthday party, would it be Cantref farm, or a fairy party... having asked Deri this eve she DEFINITELY wants Cantref. Which has pros and cons. Pros = I don't have to do anything except turn up as its a playbarn on a farm, they do the food etc, kids don't need entertaining as they run about for 2 hours like loons. Cons = cost, and the shite food LOL! But as I may be exhausted still from chemo stuff, it seems it is the best option this year. :)
Spoke to mum earlier to thank her for the flan she gave us on weekend for tonight, said I'd emailed to explain why I was bit whatever I was on Sunday, she said straightaway she understands, it's a lot to deal with and just having the hickman hanging out of you every day must to stuff to you even if you're not consciously thinking about it! Bless her :) Two sleeps til chemo day. Washed my hair and lots came out. I wonder if there'll be nay left in morning to fluff up and spray and blowdry lol?!
Going to drink a big mug of tea now and hopefully have a quick natter with LouLou if all goes to plan... :)

overwhelmed?

A nice start to the day with a nice long bath, of course tucking the tubes up out of the way so they don't get wet, followed by only having to shout 4 times to get my 13 yr old out of the house so we could get to my mums for lunch, time being the essence today as they were off to Devon at about 4.
"you look pale and fraught" said my mum, more than once. I wasn't feeling fraught. But it got me thinking. And I think all the help is getting to me! How odd does that sound? And perhaps ungrateful?? But I am used to my space and independence. And I AM appreciating all the help. She is planning on redecorating the girls bedrooms. It is overdue! And the bathroom, ditto. But what is getting to me is how many times she phones, and how long she wants to talk for, often repeating herself. Now, I KNOW she is worried. I KNOW she wants to help. But talking in person knackers me out. Sometimes I do not want to talk, to anyone, or even HEAR other people talking! Does that sound odd? Anyway, I sent her an email, along the lines of what I said here....
""Thanks for lovely Sunday lunch, hope your visit goes well

I wasn't feeling fraught, but I did think about why you may have said that.

I think I am feeling a bit overwhelmed. I am used to lots of space and independence.

I am enjoying and appreciating the help from you and other mums etc, but, sometimes my brain is tired

and I don't want to talk or to hear people talking, or find it hard to concentrate! Does that sound odd??

Others I have spoken to say they found it the same whilst having chemo - things need to be kept simple and

you know when you can talk and when you can't and it seems rude to say to people, do you know, I can't really chat at the moment, try me again later/tomorrow, but I suppose you have to do it otherwise you get more tired?

So. To compensate fro the days when I'm not chatty, I thought of a plan to help us all.

When we decide what is best thing for you two to do to help on Wed mornings, let's write it down, me in my diary, you in yours, then we don't need to talk about it a lot unless it needs dates changing or something adding.

 And, last but not least, THANK YOU

Lots of Love and cwtchs

Ems xxxxxxxxxxxxxxx   ""

I hope that sounds okay to them!!?!

P worked too long today to appreciate his night off so he's asleep on his sofa and I wanted to go drink coffee down the Bear so I'm sulking a bit now but that's what happened when you date someone who runs a hotel and restaurant!! I did say to the Universe that my next fella needed to have a job and work hard. HAH be careful what you wish for lol! ;) A new chef and new menu has meant a manic weekend, but I think he has Mon eve off , so hopefully, tomorrow evening shall be all ours!!

I am stuffing red grapes down me. I guess it balances out the chocolate I stuffed earlier!

A friend tells me a woman we know from our kids' primary school is also thinner and sporting a head scarf in our village ... blimey. I like her too, although that sounds silly. Anyway, maybe we'll do coffee over bald heads?