Chemo #2 postponed until tomorrow!!!

Had a call at 8.45am today ... white blood cell count too low to have chemo today but could I go in for an injection (first of 6) to ensure I could have chemo tomorrow instead?
Bloody hell!!! I'll be a pin cushion lol!
So I have these needles which i can self-administer for 6 days with Sat and Sun as a gap, so I did the first one at the hospital and was quite nervous as HATE needles but didn't feel a thing! There ARE good reasons for having my ''muffin top''!!
Doc confirmed the CT scan results - it is early stage 2A - in neck and a few towards chest - and she commented how much smaller my neck is already ... phew!!!
Then another nurse who works with research docs asked if I would agree to give more blood and allow part of my original biopsy to go for research, particularly as so many of my family have had cancer... yup I said.
My would was a bit red and weepy to a nurse took a swab to see if i will need antibiotics (why not have more drugs after all?!) and cleaned it up and put a dry dressing on instead of those see through ones which may have been making it sweat...
So, tomorrow instead now, inject myself in the morning, then off for round 2!!
I think that's what so annoying is that you can't really plan to do much, can you?? Never mind...
So, big hugs to us all, and try again tomorrow! :)) xxx

Round 2 of chemo tomorrow

Today I am taking Broni into town to get all her stationary ready for the new school term next Monday, Deri is coming too so I expect she will ask for a 'magazine', the pink shiny ones with a free toy on the front! Lynne has the day off too so could meet for coffee... and Pedro has the day off so may come shopping too, so if the times work out, he may get to meet Lynne! Also have to stop at the hospital around lunch time and get bloods taken ready for tomorrow's chemo, make sure everything is ok to go ahead etc, and then they order the chemo from pharmacy ready to be delivered up to the ward in the morning. Always something, eh? ;)
So maybe we will have a takeaway or a home cooked meal by Pedro later? That WOULD be nice ;) - and then a nice chilled evening lying on sofa watching a film or some crap tv :D
I don't know how I feel about Round Two - I am *planning* on feeling the same as last time lol!
I want to carry on as normal in many ways, to go shopping, to go to work, to chat to friends about shoes and babies and holidays and plans ....... and then I have to fit in going to hospital for blood tests, Hickman line flushes, chemo, appointments, and the two worlds clash and I get frustrated and exhausted! And my kids are trying to carry on as normal whilst asking me how I am every day and my 6 yr old wanting to hug me and only doing so on one side when she remembers the Hickman, and I have to take my temperature twice a day and Deri asks if i am to hot or ok, and the big girls making me cups of tea, and then waiting to book holidays or accept invites depending on treatments dates etc etc etc   ... those are the down days I guess. But always I nudge myself and say hey, you're here, and you're doing ok, and then I fell guilty for those who don't have as good a prognosis as me! So yes, the two worlds sometimes meet, sometimes clash, sometimes bounce off each other - and sleeping is a good way to deal with all that, plus it is healing too!So, anyway,  let's see what this week brings............ x

Hurumph

Well, one good thing is, it's Bank Holiday Monday and it isn't raining!
I am feeling a tad sorry for myself today, whilst laughing at myself for doing so lol! ;)
It's the Hickman line, kind of getting in the way; I can't lift things, move my arm properly, and it gets sore and makes me tired... grump grump grump!
And yesterday, by 8pm, I was yawning so much too...totally exhausted! And I was in bed by 9.30 - maybe having two lots of visitors and bathing the dog was all too much?! It was so nice to see everyone... maybe I just need to pace myself a bit more!
Tomorrow I have to organise taking Broni shopping for school stuff and hopefully meeting Lynne for coffee, around getting my bloods done at the hospital. Grump grump grump again! Then Wednesday, round two of chemo. My mum is going to have the kids Wednesday night/Thurs day, whether I feel tired or not, so I hope to catch up on sleep and practice loafing about a bit more ;)
Once we get the CT scan results and know how many months my treatment is for, we are hoping to book a family (me, kids, parents etc) holiday to Lanzarote! Hopefully in February (big grin) - a good plan and something nice to look forward to.......

3 days after Hickman line ...

Woke on Thursday feeling as though I had been run over by a train! Deri was being picked up by Liz to play on the farm, so I went for a gentle walk to help loosen up as my body had tensed up overnight.
My mum picked me to go for the check up in the Windsor suite where I have my chemo. They re-dressed the would and cleaned it up a bit more etc, and gave me a kind of long narrow bag with a strap to go over your neck; the two tubes hanging down sit in the bag so they don't swing about or get caught in anything - I have to say, they are a bit awkward to have around! Plus they cannot get wet, so I have to have shallow baths or hold the shower head by hand so it doesn't go over them!!
Last night I managed to sleep on my right hand side for a little while for the first time, which isn't to bad considering it went in on Wednesday I guess. But I can't hug people very tightly as it's still sore. And I can't muck out my duck shed or pick up a full kettle or lift Deri up ... blimey it's a bit of a pain right now!! ;)
I am taking two co-codomols every morning and every night to help with the achiness, but otherwise feeling alright, just getting used to having a 'willy warmer'' as the nurses call it, with tubes in it, hanging down from between my boobs lol!

what a week...............

I wanted to add more, sooner... but due to the Green Man Festival kind of interfering with the net, I have been unable to access anything for a few days .... which was quite nice in a way ;)
So, having planned to attend the festival as usual, plus help out the recycling team with admin again for a few hours, I had to change my whole festival arrangement this year! So, only spending a few hours there, and walking back home (5 minutes from the house as it is on the Park where the festival is held, which is just brilliant!), to rest, and only doing an odd hour here and there for recycling, and not having a drink each evening as we would normally! But I loved the time I was there and was glad to be so near home so I could lie on the sofa, listening to the music whilst resting :) I met up with friends old and new, listened to some excellent music (having heard Bellowhead I already liked them after seeing them live I now love them!!) Pedro managed to get some time off too which was fab - nice to meander about together.
Deri was away with my mum and Bryan, and came back Sunday morning ... so spent Sunday bimbling about with Deri... her favourite spot is under the life sized inflatable elephant which stands next to the pond by the Wishing Tree :D We sat there for a while, blowing bubbles with her dolphin bubble blower, taking photos of her being sucked up the trunk............................ we met up with Pedro and ate nachos whilst watching bands then Deri went shopping round the stalls lol! Spent the evening in Chai Wallahs............. mmmmm to the 1 very nice cup of brandy chai I had .... and discovered a band called Dizraeli and the Small Gods who were brilliant!
Spent some of the time getting me head ready for the hickman line to be inserted today ... and then found out that nothing can describe it, especially having it under local - erm, if there's a next time, I'll take the general aneasthetic instead please!!! Ok, it took less than an hour, and I was home the same day, and it will be very very useful as it avoids having to have needles take bloods or give medicines, but bloody hell; you get tugged about and it feels so bloody weird as the line is fed through an incision near your collarbone and fed down under your skin through a vein, then a line hanging down from the other incision near your breast, which splits into two lines with caps on the ends............. I feel like 5 of 9 out of Star Trek!! I feel as though I have been run over by a bus, and can't  use my right arm for anything much and it's ACHY now ... yep, it was *not* pleasant but apart from a sore arm/chest, I am feeling pretty much back to normal! ;)
Am *tired * now and off to sleep .................

2 days later ...

I woke up yesterday, and lay there for a bit, mentally scanning down my body to see how I felt. I discovered that it felt as though I had a mild hangover! So I took the morning nice and slowly, aiming to wander over and do some admin at the festival after lunch.
I felt as though my skin was ''greasy'' ... I don't know if any other folk having chemo have had that feeling... And I had an odd taste in my mouth but nothing that I couldn't distract myself from with drinks or mints. Walking around made me tired, so I did as little of that as possible! ;)
By 8pm I was very tired so came home and put my feet up, munched some food, watched some tv, bed before midnight.
I have to say I had a huge nightmare that woke me up at 2am and kept me awake for a while afterwards, but I do tend to have quite intense dreams anyway, so maybe that was like a 'release' of tension etc??
This morning, not quite so ''greasy'' sensation. I have been very good at remembering to take temperature and my pills etc. Today I am off to be assessed for the line they are putting in next Wednesday. Then taking my teens over to the festival to get their tickets swapped for wristbands etc, and see how long I decide to hang out there later.
I am still sleepy so I *will* be taking things nice and slowly!

First Day of Chemo ...

Well, I went to bed late, and had a fairly ok sleep with odd dreams that slipped away as soon as I woke up. My alarm went off on my phone and I saw I already had best wishes from some friends and colleagues... so very thoughtful!!!
I packed a book and some mints and a shawl and my mum and stepdad dropped me off.
I headed into the ward, and was again struck by how nice, normal, laid-back and calm the staff are there. (Thank you Staff!!)
Hooked me up, put anti-sickness, steroids and Piriton through me, then the ABVD drugs one at a time. One is another short drip, two were the biggest syringes I have ever seen!, and then one more drip which took 2 hours.
I played some apps on phone, then Sascha came to see me with gossip, gorgeous new scarf and books to borrow, and then when she left I talked to the man opposite ... we made jokes about hair loss, he said he's old and grey so doesn't care but it felt like maybe he did a little anyway... I said that no hair and being better is fine by me although of course it hasn't happened yet so maybe I'll need to eat my words! ;)  I had a referral made to wig shop in Usk and to the ward psychologist for offering support to my girls. A wig? Hmmm. I think I'll order a funky one to keep my options open, but if all the hair goes, I think I'll be more likely to go for scarves around head!
So, I feel tired, but not dreadfully, and woozy from all the pirition! Mum & Bry gave me lift home, kids put food in oven that my mum had dropped off, Pedro came over for few hours to check on me and nag me to REST, which I am - I am perfecting the lounging about on sofa; I think I can take to this being waited on quite well! ;)
I have taken the preventative sickness pill, and will keep doing so as it easier to prevent than cure once you start feeing sick. Just about to check my temperature, which I must now do every morning and tea time to check I am not having any reactions/infections etc.... I had better set my alarm on my phone twice a day so I remember!!
I feel....... ok you know? It was weird being on the ward for first time in one way, but only because it was new , and the staff and Sascha made it very normal. The tiredness seems to be, in part, an after effect of worry and wondering ... who knows how the drugs themselves are affecting me? As the nurse said today - some folk go home and sleep for 3 days, others go home and start decorating the house! Stay smiling, be positive, that's my motto - after all, when else would have I had 3 hours where I HAD to do nothing except relax/read etc in a giant armchair and get fed coffee, biscuits and sandwiches from the staff?? ;)
My lovely  mum and stepdad have now taken Deri off til Sunday morning (this was planned months ago, did I say that already??) - so another big-up to them!!
So, off to lurk on the sofa now,drink my coffee, maybe have a snack, and see what tomorrow brings... :)

Today: Green Man, chemo, my friends, and family...

Monday morning. supposedly the start of 2 weeks annual leave from work. But it will turn into sick leave on Wednesday when I start my chemo. Who'd have thought that?! The Chemical Brothers at a festival? nah, let's have chemo instead... doesn't quite roll off the tongue so good thing it's not catching on ;)
Also, the Green Man festival begins on Thursday. I usually go along, and I usually do a few hours here and there, helping out the Green Man production team. I have been to see them and told them my presence could be sporadic this year! ;) It is literally across the road from my cottage, we are bloody lucky to live on the land where it is held... sometimes we camp there, sometimes wander home, but this year I'm not camping - if I am ok enough to wander over for a bit, I'll be wandering straight back to my huge old bed with the most comfortable mattress in the world :D

My Friends. Yes, they need a capital letter.. Because they are all so bloody fabulous. I have friends living nearby, I have friends abroad, I have friends scattered around the UK and the world, some of whom I have known for years and years, others I have met only recently, but each one I have spoken to has shown me such Love and support this last week... well, I could cry at the loveliness of them all!!! So, for anyone else that reads this, if you are my friend, know that you are loved very much! I cannot name you all here and now, but to all those I have a relationship with, in whatever context, I am damned blessed to know you all!!

My Family. Yeh, capitals all round today! We may be scatty, occasionally disfunctional, a crazy blend of Welsh and Irish lapsed Catholics, but we are a massive (literally, I lose count of my cousins) gang of loving loons. As for my mum and step-dad - sometimes they are mad as hatters, but they are a rock. I love them to bits! I'm 41 and my mum still forgets I'm an adult sometimes... I think that's pretty normal from what I hear, so I'm looking forward to being a slightly interfering 60 year old with my kids too ;)

So I thought I would start this week with a huge THANK YOU to everyone xxx

I just tipped out my 12 steroids and 1 yellow capsule and 1 big white tablet onto the table to have after my toast. Deri was fascinated. ''Is that your breakfast?" - she had overheard me joking about my new breakfast yesterday!

Well, John from Green Man needs a needle and thread for his trousers, so I'm off to do a Good Deed and see if me and my girls are collecting our wristbands today or tomorrow.

2 sleeps til D day, or is that C day?? Anyway, I'm off ......................

The maddest week of my life...

Ok, let's start from the beginning. It may help me keep track, because this is the fastest, craziest roller coaster that Life has presented me with so far!
End of May this year, just a few weeks into my new and amazing job, I found one swollen lymph node on the right hand side of my neck, towards the collar bone. My thyroid seemed a little swollen too.
I went to see my GP on June 3rd, because although I am a 'glass half full' person, that little voice in the back of my head said ''Hang on!'' - something just didn't *feel* right. AND, because my family has experienced all sorts of cancers and I wanted to rule that out and maybe get some antibiotics if it was allergic reaction or something.
My GP said he doubted it was anything to with my concerns, thought it was my thyroid playing up and said all sorts of allergies or infections can cause swollen lymph nodes, and not to worry. He sent me for blood tests for thyroid and said I would have a routine scan, might take about 6 weeks to come through. I kind of thought it should be sooner, then wondered if I was worrying too much, but that little nagging voice in the back of my head kept nudging me... the bloods were negative and GP seemed unconcerned, but a week later and I had 3 swollen lymph nodes, so I demanded to go back and see him, which was the 14th June, and told him I wanted an urgent referral.
I had a date sent for the 8th July to the ENT ward, where I had 2 fine needle aspirations and an endoscopy. YUK!!! Dr said if they were inconclusive he would refer me to a very good Dr in Newport who would do a scan under ultrasound and a biopsy. I was told to call them in 7-10 days for the results ... what's with all the waiting?!
So I called my GP who said the results were inconclusive but one thing it MIGHT be was Hashimoto's disease, where your immune system attacks your thyroid. IF it was that it would mean tablets for life and a possible op. Ok, well, that sounded do-able. So, on the 27th July, off we went to the Royal Gwent for the scan/biopsy. I saw the screen during the scan and saw some dark circles ... and my heart told me what they were, but I didn't ask, I just kept thinking ''let's wait for results before we jump to conclusions here Doctor Emma!" Then he did 4 biopsies in my neck after injecting me with local anaesthetic. One biopsy kind of exploded over his doctor's shirt. My mother had come in with me but couldn't stand the sight of the medieval looking core biopsy needle guns so hid her face! Then she took me home to rest on her sofa all day, where I lay thinking about the possibility of cancer in my neck and how being a single parent sucked at times like this and if it was cancer there was no fucking way they were getting me THAT easily!
Waiting for 10 days was hell. My lumps kept growing, and although I could breathe and eat ok, it felt like a scarf was being slowly tightened around my neck and I had to have extra pillows in bed, and - ironically - hide my neck with light summer scarves whilst at work or shopping as people were by now not being able to stop themselves staring at my neck. Having been diagnosed with fibromyalgia 2 years ago, I have been used to waves of tiredness and achy-ness, but since June I have been EXHAUSTED every afternoon, and having to drink strong coffee to stay awake, as I could fall asleep standing up!


  August 5th, appointment at Nevill Hall for the results. My friend Emma, a midwife too, offered to go with me, then my mum offered. I pondered. Mum is highly emotional, plus I didn't want to have to be worrying about what she would be feeling if they told me bad news. yes, I know, I shouldn't think like that, but I do! :)
I didn't want Emma to be upset either, but I felt she would put on her professional mode and deal with it better so i could deal with it better, if that makes sense?! It was odd, sitting there chatting about life, work, kids, boyfriends, and then being called in. Dr Raza gently talked about abnormal cells, and then mentioned, almost apologetically, lymphoma.
BANG!
My world just turned upside down. Although I'd half-expected it, it was nevertheless a huge shock. He asked if I knew what it was, a cancer? I nodded. I didn't cry or faint or anything, and I think that threw him a bit! Emma grabbed my hand and I squeezed her hand to reassure her! He told me that it was a very easily treatable cancer and so I should try not to be too stressed etc, and he would now refer me to the specialist team etc. Emma and I kind of stumbled out and found a sunny bench outside. Who to tell first? I didn't want to tell anyone, just sit in the sun and chain-smoke my last cigs away, knowing I'd have to give up the measly half a dozen I let myself smoke each evening!


  First thoughts as a single mum of 3 girls - will they be ok?? Then my new job - would I be able to keep it?? And if not, how would I look after my 3 girls??

Then a text from my stepdad - "are you still at the hospital?" - Emma was such an angel, talking me through all sorts, trying to crack jokes, offering to either tuck me up in bed or take me to my mum's etc .... I knew I had to just face it, and see their faces crumple. Ok, my mother is an absolute legend when it comes to being a Fab Granny. She does however tend to fly off the Handle of Drama and create all sorts of chaos sometimes, so I was also steeling myself for making sure she didn't go overboard ;)
My 6 year old daughter was there, so that made us all keep the banter going when she ran up to us every 10 minutes. My mum first of all tried to convince me that she should turn her den into an ensuite bedroom, or failing that, draw up a rota for the next 6 months stating what time she would turn up at my house every morning. I said to her later that day , that I would absolutely need some help and I would appreciate that help, but this was something where everyone would have to take their lead from me because I would not know in advance each day how I was feeling, physically or emotionally, and that depending on how I react to the treatments, would then impact on how much support I'd need. Pedro called - he put it in a nutshell ''So you will feel shit, then we help you, then you be ok" - sometimes having English as a 2nd language cuts right through the crap!
Then home to tell my teenagers (I have 3 daughters, 16, 13, 6) - I am waiting to tell the 6 year old something simpler nearer time of 1st treatment. I didn't use the word lymphoma as I didn't want them googling it and finding any scary stories and worrying themselves, so I said my lumps were cancerous but it wasn't 'death cancer' and I would be having chemo so I could be poorly before I got better. Their faces!! Oh that is what is so unfair about cancer for me, having to see my girls try to be brave for their mummy whilst being upset themselves!!!!!!!!!!!!!!
That night I was telling macabre jokes, the next morning I woke up and immediately sobbed for half an hour. Then I got up and was pissed off! Had a call at work on Tuesday from the haematology team, asking me cheerfully yet gently if I could go meet them on Wednesday, 10 am the next morning. Well, I guess so eh?!
My mum asked if I wanted company but I wanted to just go there, meet everyone , absorb what I could, and just get the feeling for the ward.
Blood tests first, then meet the consultant. She is lovely, very down to earth and talks TO you not through you like some do. She explained everything in detail, which was what I needed but my heart still felt like it had a vice gripping it. She did a physical exam of me and said it seemed the lumps were only in my neck but I'd need a CT scan to confirm. Next thing I knew I had one booked in for the next afternoon!! Then I met the ward sister, who took more bloods and then sat me down with all the literature about chemotherapy, taking my temperature 2/3 times a day once I start chemo, about avoiding high risk food groups, about the likelihood of losing all my hair, and that I would be on ABVD once a fortnight, and will need a hickman line inserted into my upper chest under a local anaesthetic so my veins don't collapse with all the blood taking, drug filling, etc. She said I can order a funky wig if I want to. And the Dr gave me a weeks worth of steroids to reduce the inflammation around my lumps - on day 4 now and my neck does look better, and feel better, less restricted. How busy was MY brain?? BUT - I felt safer, I felt that now I have an experienced team who know what to do for me, plus my family and friends to help me with any other stuff. And I felt better.
Thankfully this has excellent recovery rate so its a case of getting through the shite and knowing I'll be ok at the end of it all, I'm ok until I think about my girls, but hey, we will all be ok at the end of it.I told my teen some more info - I'm trying to give it to them in chunks so they can absorb it - and said i was likely to lose all my hair. Broni looked so upset. Meg bravely joked about it being ok coz I wouldn't have to shave my legs if I did lose my hair.
The next day was my CT appointment. That night therefore, I had to drink a pint of water with the barium meal thingy in it. BLEUGH!!!!!!!!!! And again the next day, half  a pint.  Off I went, feeling a little nauseous as also not allowed to eat for at least 3 hours before scan. 
They had to put a cannula in my arm in order to inject dye into my veins - the first nurse couldn't get a vein - mine tend to shrink - and so poked this needle around in my arm for ages and I thought I might throw up!! So instead of grinning and bearing it, I said that it was very sore and I wanted her to take it out and try somewhere else. She went to get another nurse who put it in my hand instead of arm and it worked straightaway. but after all the poking and pain after the 1st attempt, as she went to call the other nurse, I started crying. It was just as though it was the one little thing to just be the last straw after everything that has been in my head since last Friday...! They asked if I was ok and I just said it had been such an emotional week - They were very sweet to me and said they would get the CT ready immediately so I could just get it over with. :))
So I lay on a 'bed' , got hooked up to machine for injecting the dye, and the bed went back and forth in and out of this giant ''polo'' which is what the CT scanner looked like!
I found then that I was very low Thurs and Fri, tearful and pissed off - but I perked back up yesterday a little. My neighbours and I hold a BBQ every August for the folk who live on Glanusk with us, and I enjoyed it but I wasn't 'there' all night, if that makes sense?
So, that's it now until next Wednesday, maybe the results of it will be back by then, then we can ''stage'' the cancer and see how long treatment it will be.

I think that when you are the one with cancer, you go through so many emotions and thoughts, but for me anyway, I also feel like a little oasis of calm..that's partly due to being in shock sometimes, and other times it's because there's certainly no point 'sweating the small stuff', and if you are the one without the cancer, you feel so helpless, I remember feeling that way too when my uncle was ill - so whilst everyone else is worrying and flapping and crying and trying to do too much for you, you hug them and smile reassuringly at them! ;) My mother had booked months ago to take Deri away with her and Bryan (stepdad) for a few nights holiday, and we decided to keep things as normal and for them to still go - its booked for first day of chemo so they are going later in the day after bringing me home, with 3 nights worth of dinners to put in freezer :D See, she's fab! And then, if I feel ok, I have some time off from Deri, and I feel crap, I won't have Deri to worry about. My big girls will be around and so will my friends.
  I have been advised to buy a baby toothbrush and mild toothpaste and lots of mouthwash as apparently you get a sore mouth and maybe ulcers too, and then you can sometimes lose your taste buds for a while. I also need to take layers with me for chemo as you can get cold, and a book if not taking a friend; the hospital gives you sandwiches and cups of tea and you can take snacks etc. I also need to buy Vit C and D and echinacea. Well, if I stock up on advice, on resources, and on practical things, it's bound to help.
I am planning on asking for some complementary therapy, hopefully the NHS will provide some- and my friends have offered to take me wig shopping!! I may end up just wearing scarves etc around my head, but if I have a wig or two, then I have options....

So, another adventure begins. Chemo starts next Wed 17th, 10am, with bloods being taken, more advice, then the drugs; I'll be on a drip for at least 2 hours. My mother is dropping me off and a friend is coming to sit with me. How do I feel? I don't know!! Hopeful, positive, scared, intrigued, optimistic.......