Had an impromptu lunch date with the lovely Kerry last week, which was lovely coz she's very cwtchy and can always make me laugh too :)
Pam was over Fri for dinner - we are willing Glanusk to get her that little cottage!! She is another rather fab person and to be closer would be rather nice plus useful for us both too as our 14 year olds are friends :)) I talked about this blog and how it could be a different thing (secret so far haha) and Pam read an entr and it made her sad coz I'd been sad and then she was worried about me and I said, it's just how it is.
So, Saturday found me in Alex's car being swept off to Buckinghamshire for Vicky's birthday bash which is also an annual gathering for us girls who lived in London together all those years ago ;) I sent a little 'hello' across the border to Oxfordshire to Hils as we zoomed along (and Alex CAN zoom!!)
Had a great evening and caught up on the gossip and news, and then my friends made me a bit emotional as they gave ME gifts - saying the felt like crap friends because they lived so far away!! I had lilies and stuff from Lush, and a trollbead! (thank you Michele!!!) Fab food and lots of bubbly and a good ol' laugh, and staggered off to our beds at about 3am which was a bit early for us, so we must we getting old ;)
I took some duck eggs so breakfast was duck eggs, smoked salmon and bagels and lashings of tea!!
Rescued my mum from Deri and the dog and then headed back home - picked up Broni who hd bleached and dyed her hair the brightest red!! Just like mine when I was on my 20's ;) Of course school wouldn't like it...
Monday, 9a, in car en route to Heath hossie for PET scan. Phone call. Broni in isolation for hair thats too bright. WTF? Could I please do something about it? Yeh I said, maybe if I have time after my scan I'll buy some dye. So, I did, still red though, but darker, not flourescent ;)
Waited an hour and a half for radioactive injection to do its stuff. When the nurses come in to administer it, they leave the syringe in its metal tin on a trolley outside whilst they get a cannula in your arm. Then 1 nurse swings the trolley in, they plunge it in and then get the syringe back in its tin pronto then dash out of the room, unable to get away from you quick enough hahaha! I read ''For Love of Fat Men'', then played on phone, then read again, then dropped phone as dozed off! May have been the 3 cocodomols I took for back pain ..?
Anyhoo, eventually they came to get me - I took in Deri's small soft fleece blankey to fold and put under my lower back - the small of my back arches quite deeply if that makes sense and last time it hurt, as I have ongoing back pain etc. So, got comfy, got my arms velcro-ed to my side, as you MUST remain perfectly still (don't forget to mention you're claustrophobic if you have one of these offered to you!), and then in we went, into the giant fat polo that is the PET scanner - part polo, part tunnel, but a short fat one. Anyway, as I had looked at it all last time, I thought I's just close my eyes and do some nice deep breathing as I used to do in yoga all those moons ago... woke myself up snoring ....... I hope that provided them with a giggle on the other side of the glass as there is a 2 way microphone so you can call them or them give you directions etc :)))
Today was reflexology day at Usk House, and a coffee later with Kerry. what a lovely blissful foot rub that was!! And then Kerry said, lunch at hers.......nomnomnom, beans and cheese on toast! Perfect comfort food, because I have been through the mill in regard to my emotions and thoughts in the last day or two!
Firstly, because I have gotten myself into a huge flap about having the transplant! I KNOW that it will be fine and I will be doing my kids a favour in the long run etc etc, by being here! BUT - I am SOOOOOOO tired now. I feel I need boosting up from all sorts of areas in order to feel ok enough to start it! Last night I was a bit of a tizz, trying to work out if there was an alternative, and not wanting it done at all!!!
Then Crap Dad called this morning. Wondered why I hadn't been in touch. Hmm. Pot. Kettle. Black. Anyhoo. Asked what was the next thing etc. I said about the transplant and the possible 3 week stay and how my mum couldn't do it for 3 weeks as not well enough and how I'd need to call on everyone to help out so I could make a rota.
Know what he said? ''Hmmm, well, we're all the way over here (WestonSuperMare) and I can't get over unless Marilyn's driving, sorry". In his next breath he told me how my stepmum (Marilyn) has had her money through from her crash last year, and she's been so stressed over her two daughters difficulties with a) pregnancy and b) miscarriage, and her own scare with lump in breast that is clear now, that they'd treat themselves to a week in the Maldives. Then, as they live in a big caravan (renting out their own perfectly fine house??) and have to be off site one month a year, they will come back and rent a cottage for 3 weeks, down the road from the site.
Oh really? Not just down the road from me, to see if my kids may need some support.
not a holiday in Cornwall and then an offer to give their grandchildren some funds for treats as they've had such a hard time so far?
Noooooooooooooooooooooooooooooooo, silly me. He lives up to his name of crap dad eh?
Grrrrrrrrrrrrr.
Ah well, his loss.
Tomorrow - Rituximab day. Must remember to take a nice packed lunch so don't have to suffer the perils of hossie sandwiches ;)
I had a lovely thing said to me today, which is another reason I want to do the secret thing with my diary... "i'm gonna learn from you the way you turn what could be negatives (some are lets be honest) into more positive situational thinking."
Wow!!!!
Tuesday 31 January 2012
Friday 27 January 2012
Why some days are harder than others
Bit introspective today, so just scroll to next person if you don't want to read my blatherings :)
It's hard sometimes to read of so much shit caused by cancer.
Some days visiting the Macmillan website is amazingly helpful, occasionally I just can't read any more about pissflapping cancer! I am sorry if that upsets anyone. It may be the reason I am not commenting every day. Weird how you are not always you when you're going through this fight. Oh yes, totally understandable, but how frustrating too!
And sometimes being a single parent with cancer hits me hard, most of the time it's fine, and I have amazing support, but cancer fucks with your head, as we all know! Of course, it's only useful having a partner when you have cancer if they don't run away or stick their heads in the sand and are of some use to you, I also realise that. Yes, I have my daughters here with me. But you can't lean on them when you want to be comforted or just hugged to sleep, too much pressure on them. And what is annoying me, is that I was ENJOYING life as a single person, rediscovering bits of myself (although the bit of me currently masquerading as a voluptuous belly may take some more time) and taking up new or forgotten hobbies, appreciating the laughs I have with my friends ... so now, the very act of missing someone to be there for me can sometimes really piss me off!
There's no pleasing me today is there?! ;-)
And I suspect some of this is brought on by the fact I am off to Beatrice's funeral today. She was nearly 90, and is the mother-in-law of Deri's teacher, Jan. We sometimes sat in the Windsor suite together as yes, she had cancer too. She hated being bald and a lovely little OAP style wig, which occasionally would sit skewiff on her head :) She was a lovely woman, very sweet. She had been fighting it a little while longer than me. And in about November her strength started to go.
Jan's daughter was expecting her first baby in December, and it was a little late, as usual. Beatrice was poorly and admitted to the same ward as me when I was in, in December. On the Tuesday, the baby was born; he was brought up to see B Friday morning. By now she was not fully awake often but seemed she could hear people and respond a little. Her granddaughter sat and told her all about her baby, then went home.
On the Friday night I was a little agitated, wanting to try and catch Jan before she left the ward. When I saw Jan I knew why I had been restless. B had died. I think she was waiting to 'meet' her great-grandson :)
So I asked Jan last week if I could go to see B off. Because I liked B, and because Jan has been very supportive to me and Deri. So that's where I am off to shortly. Bright Blessings to Beatrice and her family!
It's hard sometimes to read of so much shit caused by cancer.
Some days visiting the Macmillan website is amazingly helpful, occasionally I just can't read any more about pissflapping cancer! I am sorry if that upsets anyone. It may be the reason I am not commenting every day. Weird how you are not always you when you're going through this fight. Oh yes, totally understandable, but how frustrating too!
And sometimes being a single parent with cancer hits me hard, most of the time it's fine, and I have amazing support, but cancer fucks with your head, as we all know! Of course, it's only useful having a partner when you have cancer if they don't run away or stick their heads in the sand and are of some use to you, I also realise that. Yes, I have my daughters here with me. But you can't lean on them when you want to be comforted or just hugged to sleep, too much pressure on them. And what is annoying me, is that I was ENJOYING life as a single person, rediscovering bits of myself (although the bit of me currently masquerading as a voluptuous belly may take some more time) and taking up new or forgotten hobbies, appreciating the laughs I have with my friends ... so now, the very act of missing someone to be there for me can sometimes really piss me off!
There's no pleasing me today is there?! ;-)
And I suspect some of this is brought on by the fact I am off to Beatrice's funeral today. She was nearly 90, and is the mother-in-law of Deri's teacher, Jan. We sometimes sat in the Windsor suite together as yes, she had cancer too. She hated being bald and a lovely little OAP style wig, which occasionally would sit skewiff on her head :) She was a lovely woman, very sweet. She had been fighting it a little while longer than me. And in about November her strength started to go.
Jan's daughter was expecting her first baby in December, and it was a little late, as usual. Beatrice was poorly and admitted to the same ward as me when I was in, in December. On the Tuesday, the baby was born; he was brought up to see B Friday morning. By now she was not fully awake often but seemed she could hear people and respond a little. Her granddaughter sat and told her all about her baby, then went home.
On the Friday night I was a little agitated, wanting to try and catch Jan before she left the ward. When I saw Jan I knew why I had been restless. B had died. I think she was waiting to 'meet' her great-grandson :)
So I asked Jan last week if I could go to see B off. Because I liked B, and because Jan has been very supportive to me and Deri. So that's where I am off to shortly. Bright Blessings to Beatrice and her family!
Wednesday 25 January 2012
Bumper 'Harvest' ; or, When My Luck Was In
Yesterday's stem cell harvest, day #1 of a possible 3, turned out VERY well and I did NOT need to go back :)))
They told me that they needed a stem cell level of a minimum of 0.8 to proceed (I was not made aware of this before the day and so was unaware that I could have been sent home again an hour after arriving, which was a little unsettling as I had nobody with me to take me home, having arrived by taxi and due to be picked up again at 5pm!) - they came back and said it was a level of 14, so, huzzah!
I was then wired up to the machine (I will try to add photos later) and told my arm with the cannula in had to stay completely still for SIX hours. Fab. ?? The big seat I was in was fully adjustable from all angles so that stopped me getting backache too badly. I had to drink very little as unable to be taken off machine for 6 hours, so either wait for a pee , or have curtains around me and use a commode. I managed to hold out for 6 hours.
This is a personal record for me and I wish it to be officially recognised. Thank you.
I tried to read my book using one hand and/or my lap. This was managed in short bursts. I played games on my phone, using my left hand. My signal was sporadic so could not text very frequently nor get onto Macland etc.
I resorted to taking photos and video footage of this bloody amazing machine! I guess its similar set up to dialysis? Other patients who came and went in the chair opposite me, having bloods or chemo etc, stared with open-mouthed amazement at the magickal machine. I felt like something out of a weird sci-fi film.
So much blood gushing into the machine! How can a machine recognise plasma and stem cells out of blood and separate and sort them into separate bags?? Fab! I had none of the side-effects mentioned. Just after it started up, I had a metallic taste in my mouth for a few minutes, but that was that. Oh, and feeling very sleeeeeeeeeeeeeeeepy.
At lunchtime the People From The Lab appeared and took a sample from my stem cell bag to give them an idea of how much I was producing and therefore how many days I'd need to be attached to machine. At 4pm, they told me that they need to collect between 2-4 'bags' worth of stem cells, 2 for transplant, 2 for spares. I had given them enough for 10 bags. HAHAHA! So I did not need to return at all! Huzzah again!
At 4.30, they disconnected me and I had to sit up carefully, and flex my by then very numb and stiff arm! Then go to the loo, have a drink, perform like a normal person (that took some covering up I can tell you!!) and the released! The pee was such a welcome one!!!!!!!!!! And then the coffee I bought downstairs was bliss!!
No bruise where cannula was inserted. Yay!
Just as I thought I was spared the hospitals for the rest of this week, the Heath called again this morning. Can I go in Thursday for a PET scan? This time it's an hour long and with arms above my head?! Joy. My back is already sore, so I told them I'm taking a small cushion for the small of my back and if the scan has to pause or be cancelled because I'm in pain, then so be it! I know I have to have this as its important for checking staging and progress etc etc, so let's hope my back behaves :)
Monday 23 January 2012
Countdown to harvesting!
Been a bit absent last few days as had visitors Fri and Sat and Sun! Saturday was GREAT as it was my friend that I lost touch with 9 years ago! We couldn't stop hugging and our kids - who were also really close back then - only took 5 mins to get over the awkwardness and we all had SUCH a lovely day!! :))) Plus - Eils made one of her scrumptious chocolate cakes with choc icing and choc hearts on top. YUM. I had forgotten how scrummy her cakes were. We were so thrilled at being together again, and have made lots of plans for doing STUFF :))
Today went for bloods - if they were not behaving the stem cell extraction would not be able to begin tomorrow - but all was well. Also had appointment with my fibromyalgia consultant (diagnosed 2 years ago) who said it's a small possibility that something we thought was fibromyalgia was start of lymphoma but we won't know until I've finished my cancer treatment and then see if any symptoms improve regarding the fibrowhatssit as I prefer to call it.
Interesting.
So I take my backache-inducing GCSF injection again this evening. Then take one with me to the Heath tomorrow for some reason? I mean, if I need to have one ready for Wednesday, then surely I can just take it at home as usual??
Talking of tomorrow, I am being picked up by taxi at SEVEN THIRTY AM!!! Ugh. And they will pick me up again at 5PM! Bloody long day! And I shall have my stem cells harvested. I wonder if they can plough me too?? Sitting in a chair watching my blood run out of a cannula into a machine where the stem cells are plucked out and shoot up into bags and then the blood carries on back into me probably via the Hickman... should I take one or two books or will my eyes be glued to the machine all day? ;)
I wonder whether or not they get enough cells in one day, or if it takes two, or even three (keep fingers crossed for maximum of two!!)
Today went for bloods - if they were not behaving the stem cell extraction would not be able to begin tomorrow - but all was well. Also had appointment with my fibromyalgia consultant (diagnosed 2 years ago) who said it's a small possibility that something we thought was fibromyalgia was start of lymphoma but we won't know until I've finished my cancer treatment and then see if any symptoms improve regarding the fibrowhatssit as I prefer to call it.
Interesting.
So I take my backache-inducing GCSF injection again this evening. Then take one with me to the Heath tomorrow for some reason? I mean, if I need to have one ready for Wednesday, then surely I can just take it at home as usual??
Talking of tomorrow, I am being picked up by taxi at SEVEN THIRTY AM!!! Ugh. And they will pick me up again at 5PM! Bloody long day! And I shall have my stem cells harvested. I wonder if they can plough me too?? Sitting in a chair watching my blood run out of a cannula into a machine where the stem cells are plucked out and shoot up into bags and then the blood carries on back into me probably via the Hickman... should I take one or two books or will my eyes be glued to the machine all day? ;)
I wonder whether or not they get enough cells in one day, or if it takes two, or even three (keep fingers crossed for maximum of two!!)
Friday 20 January 2012
Consulant Chat
So I went to the hospital Wednesday for bloods and to see Dr P-J (no she isn't a pair of pyjamas).
Whilst I was there I saw a young lad and a worried looking mum and they looked like First Timers. They were taken aside for a chat and then one of the nurses asked if I would show the lad (maybe 17-19 years old?) my Hickman Line as he was having difficulty understanding what she meant and he was being booked for one. Soo I went and showed him and told him that it sounded weird at first but was in fact very useful. I stopped short of advising him to have a general not a local when it happens! Then he was out in a chair opposite me and wired up to the drip and I smiled at him and asked what he was having today, and he shrugged like he didn't care and said he didn't know, he left all that to him mum to listen to. The nurse half joked with him that that wasn't good enough. I asked his mum if it was his first session and she nodded. He was having ABVD. SO I said the speech about everyone reacts differently but I'd been fine and he may be able to still work p//t depending on what happens etc. The poor lad looked totally in-denial-and-shock and I wanted to cwtch him and his mother. Fucking cancer!
So, Dr P-J examined my neck and said she could feel nothing - I explained Lumpy did start to swell again before I went in, and she said that is why we are cracking on with getting the stem cell stuff done, as my lump responds quickly to chemo but doesn't disappear - stubborn bastard! That's what you get for being an awkward cow with a rare (1-3% likelihood) form of lymphoma that is quite possibly as stubborn as oneself ... dammit! But there is the good ol' NHS spending a lot of money on me to make me better. So, combined with friends' support and the familys' support and everyone's love and some peoples' prayers and others' blessings, along with my determined-ness (ooh new word) and Kicking Pissflapping Cancer's Arse attitude, we're nearly there guys and gals ... well, nearly at end of this particular stage. Coz I know there will be maintenance and top-ups and blood tests etc for a while after the transplant, and we don't know when the transplant will be yet! The staff nurse said it wouldn't be too long due to the situation. And I didn't get a chance to ask her what she meant by that as the consultant whisked me off for the Chat.
So I will now have a CT and a PET scan in the first week of Feb - even if these show that there is no cancer visible, we're doing stem cell anyway to make sure Lumpy DOES stay away (as far as possible coz we know how tricksy cancer can be!)
Add to that the 3 days of out-patient for harvesting stem cells at end of this month and a meeting with my new stem cell consultant (Keith from Trinidad) on 7th Feb, and I am pretty much booked up for appointments!!
Talking of being booked up, the next few days are a bit barmy - coffee with JW tomorrow morning, then LV is down from Cardiff for lunch. Saturday, EB, a friend I am reunited with after 9 years is coming over with 3 of her 4 kids (one being at Uni) for lunch, catch up etc! Sunday K is down visiting family and coming over for coffee and natter. And my friend KN, just recovering from removal of thyroid, and I are going to cafe on Monday for a treat. Which is all good as it distracts me from going in for stem cell harvesting Tues-Thurs ;)
And my lovely 14 year old has come in from her first gig (apart from going to festivals with me) in a venue instead of a field and went in the mosh pit and did crowd-surfing!! She is a Very Happy Womble indeed :D
And its 1am!!! Get to sleep woman!!
Whilst I was there I saw a young lad and a worried looking mum and they looked like First Timers. They were taken aside for a chat and then one of the nurses asked if I would show the lad (maybe 17-19 years old?) my Hickman Line as he was having difficulty understanding what she meant and he was being booked for one. Soo I went and showed him and told him that it sounded weird at first but was in fact very useful. I stopped short of advising him to have a general not a local when it happens! Then he was out in a chair opposite me and wired up to the drip and I smiled at him and asked what he was having today, and he shrugged like he didn't care and said he didn't know, he left all that to him mum to listen to. The nurse half joked with him that that wasn't good enough. I asked his mum if it was his first session and she nodded. He was having ABVD. SO I said the speech about everyone reacts differently but I'd been fine and he may be able to still work p//t depending on what happens etc. The poor lad looked totally in-denial-and-shock and I wanted to cwtch him and his mother. Fucking cancer!
So, Dr P-J examined my neck and said she could feel nothing - I explained Lumpy did start to swell again before I went in, and she said that is why we are cracking on with getting the stem cell stuff done, as my lump responds quickly to chemo but doesn't disappear - stubborn bastard! That's what you get for being an awkward cow with a rare (1-3% likelihood) form of lymphoma that is quite possibly as stubborn as oneself ... dammit! But there is the good ol' NHS spending a lot of money on me to make me better. So, combined with friends' support and the familys' support and everyone's love and some peoples' prayers and others' blessings, along with my determined-ness (ooh new word) and Kicking Pissflapping Cancer's Arse attitude, we're nearly there guys and gals ... well, nearly at end of this particular stage. Coz I know there will be maintenance and top-ups and blood tests etc for a while after the transplant, and we don't know when the transplant will be yet! The staff nurse said it wouldn't be too long due to the situation. And I didn't get a chance to ask her what she meant by that as the consultant whisked me off for the Chat.
So I will now have a CT and a PET scan in the first week of Feb - even if these show that there is no cancer visible, we're doing stem cell anyway to make sure Lumpy DOES stay away (as far as possible coz we know how tricksy cancer can be!)
Add to that the 3 days of out-patient for harvesting stem cells at end of this month and a meeting with my new stem cell consultant (Keith from Trinidad) on 7th Feb, and I am pretty much booked up for appointments!!
Talking of being booked up, the next few days are a bit barmy - coffee with JW tomorrow morning, then LV is down from Cardiff for lunch. Saturday, EB, a friend I am reunited with after 9 years is coming over with 3 of her 4 kids (one being at Uni) for lunch, catch up etc! Sunday K is down visiting family and coming over for coffee and natter. And my friend KN, just recovering from removal of thyroid, and I are going to cafe on Monday for a treat. Which is all good as it distracts me from going in for stem cell harvesting Tues-Thurs ;)
And my lovely 14 year old has come in from her first gig (apart from going to festivals with me) in a venue instead of a field and went in the mosh pit and did crowd-surfing!! She is a Very Happy Womble indeed :D
And its 1am!!! Get to sleep woman!!
Sunday 15 January 2012
Goodbye IGEV?
Sunday morning; been home since about 1pm Saturday, hoorah to escape the hospital!
I DO love my bed!!
Actually, I nearly didn't get a bed!
Went in Monday morning with my bag, ready to have R in Windsor suite and then get admitted to ward upstairs as before. As the R was finished and they began to talk of getting paperwork done, the ward informed us that there was no bed now, and to try again tomorrow. Well, it HAD to start Tuesday as the timing was crucial to the stem cells being harvested on 24th! So, I called up my mother, asked her to come get me, messed up all her arrangements and confused Deri when she came in from school haha! I DID get an extra night in my bed, but still, they've known for weeks I needed a room, but, maybe an emergency came in, who knows :)
SO, back in at 10 am Tuesday. Had the chemo on W suite, which finished at about 1/2 pm. Waited until 5pm for ward to find a room. W suite nurses knock off at 4.30 usually so it was just me, Kay and Sarah twiddling our thumbs with me getting a bit cheesed off! They walked me up with my drip, and I was put in the assessment room until one of the 4 folk leaving could go. I had dinner in there - my family brought me food as unfortunately hossie dinner was crap, and they left about 7 ... about 8/8.30, after a nurse poked her head in and said I could have a bed on the 6 bed ward - and my face must have said all sorts - that a room appeared for me. Hurrah!
I was overtired then and stayed up til midnight reading, nearly getting an excited visit from an elderly fella called Brian who had escaped from his bed, obviously confused, trying to get the nurses to allow him his freedom and then being walked past my room he saw me sat up and nearly joined me haha!
The R and the IGEV went well, although I have been prone to lots of frequent hot flushes this time round, and a little bit of nausea yesterday and this morning. But otherwise the week was ok. Lumpy had started to stick out just a tiny bit before I went in, but was back down by Tuesday afternoon.
Not that the doctors could tell; the registrar made herself busy prodding my tummy and listening to my lungs, and my consultant was not around as her father had died over xmas and funeral fell in the week I was in... :( The regular registrar from Windsor suite poked her head around the door briefly and said 'bone marrow tests look fine' and disappeared. Well, that's great! But, erm, maybe someone could chat to me about it for 2 minutes?? Also my Hickman line dressing was not changed as they seemed to be headless chickens and I was too woozy to remind them, but have dressings at home and going back on Wednesday to Windsor suite for bloods etc.
So, overall, it went ok but was a bit chaotic!
Had lots of lovely visitors, friends and family, and managed to finish one book (The Help), start and finish the one Meg bought me for xmas (Snuff - Terry Pratchett) and then start another one Friday night! I did get a bit of a headache at one point haha!
Twice I woke in the night feeling as though I wanted to cry; I think the SCT treatment is so much in the forefront of my mind - more so the not being around for 2/3 weeks!
So my stepdad is coming to pick us up to take us back there for lunch today. They are good, although still bonkers. They swapped two of my tables around in sitting room as kept bumping into the bigger one, although it folded up and was much less obtrusive then the short one! ? ! Haha!! I'll shuffle things round a bit in a week or so. And my cup I keep on kitchen windowsill has disappeared; doesn't it feel odd when folk move your stuff around?? Bless 'em.
So 3 days of harvesting to look forward to - I have asked hospital to book a taxi or something as mum away and have to be there by 9 and I can't drive coz it will make me tired etc. And then .. Vicky's birthday do, which us girls that all used to live in London for a while and be best buddies, use as an excuse to travel across/down/over etc to catch up with each other... this will be end of month, few days after harvesting. None of them have seen me without hair before ( we are scattered all over the country now), and usually Alex and I are the naughty ladies who hand out the back door smoking... she'll have to lurk on her own now! We all stay over for the one night - we leave kids and men behind, Vicky kicks her kids out to friends too! And I AM looking forward to some R&R as Alex will be driving me :)
I DO love my bed!!
Actually, I nearly didn't get a bed!
Went in Monday morning with my bag, ready to have R in Windsor suite and then get admitted to ward upstairs as before. As the R was finished and they began to talk of getting paperwork done, the ward informed us that there was no bed now, and to try again tomorrow. Well, it HAD to start Tuesday as the timing was crucial to the stem cells being harvested on 24th! So, I called up my mother, asked her to come get me, messed up all her arrangements and confused Deri when she came in from school haha! I DID get an extra night in my bed, but still, they've known for weeks I needed a room, but, maybe an emergency came in, who knows :)
SO, back in at 10 am Tuesday. Had the chemo on W suite, which finished at about 1/2 pm. Waited until 5pm for ward to find a room. W suite nurses knock off at 4.30 usually so it was just me, Kay and Sarah twiddling our thumbs with me getting a bit cheesed off! They walked me up with my drip, and I was put in the assessment room until one of the 4 folk leaving could go. I had dinner in there - my family brought me food as unfortunately hossie dinner was crap, and they left about 7 ... about 8/8.30, after a nurse poked her head in and said I could have a bed on the 6 bed ward - and my face must have said all sorts - that a room appeared for me. Hurrah!
I was overtired then and stayed up til midnight reading, nearly getting an excited visit from an elderly fella called Brian who had escaped from his bed, obviously confused, trying to get the nurses to allow him his freedom and then being walked past my room he saw me sat up and nearly joined me haha!
The R and the IGEV went well, although I have been prone to lots of frequent hot flushes this time round, and a little bit of nausea yesterday and this morning. But otherwise the week was ok. Lumpy had started to stick out just a tiny bit before I went in, but was back down by Tuesday afternoon.
Not that the doctors could tell; the registrar made herself busy prodding my tummy and listening to my lungs, and my consultant was not around as her father had died over xmas and funeral fell in the week I was in... :( The regular registrar from Windsor suite poked her head around the door briefly and said 'bone marrow tests look fine' and disappeared. Well, that's great! But, erm, maybe someone could chat to me about it for 2 minutes?? Also my Hickman line dressing was not changed as they seemed to be headless chickens and I was too woozy to remind them, but have dressings at home and going back on Wednesday to Windsor suite for bloods etc.
So, overall, it went ok but was a bit chaotic!
Had lots of lovely visitors, friends and family, and managed to finish one book (The Help), start and finish the one Meg bought me for xmas (Snuff - Terry Pratchett) and then start another one Friday night! I did get a bit of a headache at one point haha!
Twice I woke in the night feeling as though I wanted to cry; I think the SCT treatment is so much in the forefront of my mind - more so the not being around for 2/3 weeks!
So my stepdad is coming to pick us up to take us back there for lunch today. They are good, although still bonkers. They swapped two of my tables around in sitting room as kept bumping into the bigger one, although it folded up and was much less obtrusive then the short one! ? ! Haha!! I'll shuffle things round a bit in a week or so. And my cup I keep on kitchen windowsill has disappeared; doesn't it feel odd when folk move your stuff around?? Bless 'em.
So 3 days of harvesting to look forward to - I have asked hospital to book a taxi or something as mum away and have to be there by 9 and I can't drive coz it will make me tired etc. And then .. Vicky's birthday do, which us girls that all used to live in London for a while and be best buddies, use as an excuse to travel across/down/over etc to catch up with each other... this will be end of month, few days after harvesting. None of them have seen me without hair before ( we are scattered all over the country now), and usually Alex and I are the naughty ladies who hand out the back door smoking... she'll have to lurk on her own now! We all stay over for the one night - we leave kids and men behind, Vicky kicks her kids out to friends too! And I AM looking forward to some R&R as Alex will be driving me :)
Sunday 8 January 2012
No such thing as coincidence ...
I am back in touch with an old friend that I was very close to and then we lost contact over something stupid, back in 2003. Found each other via a mutual friend before Xmas, emailed furiously trying to catch up on 9 years haha! Called each other on Friday - 3 hours on phone! Feels as though we were never out of touch :) Seeing each other on 21st. Kids thrilled too as they all used to be close too! Great end to the festive period!
I advertised a spare tv on the Freecycle website. If you have never heard of it, look it up, it's fabulous! ;)
Anyway, the original couple who contacted me changed their minds, so I offered it to the next person who emailed. Sarah. She came with a friend to collect it but didn't take the remote. I felt she was an earthy woman, and liked her.
Anyway, today, 2 days later, she came back for the remote. She also said that she wasn't sure what was going on in my life right now (she saw my bald head wrapped in a buff :) ) and didn't know if it was appropriate, but would I mind if she gave me her card, and if it was my kind of thing, she would like to offer me some healing. . . :))
I said it was very kind and I would love to contact her about it, then I looked at the card and asked if she had done her drumming nearby recently as I had seen a poster, yes, it was her. Funnily enough, I had seen her website some years back when I had split up from my ex, and didn't have funds of courage to approach her then. . . Shamanic healing using drums, and she is a bushcraft instructor.
I will be emailing her anyway ;))
Funny how things work out, isn't it?
No coincidences in life ...
So, off to hospital tomorrow. Armed with a bag full of orange juice, tonic water, nuts, cranberries, apples, etc. I am hoping the food is as it was the FIRST time I was in, not the second, as the second it was AWFUL!
I may get bone marrow results. But I am feeling so uplifted by things this week, that I have decided not to be wobbly about things until they need to be wobbled about. Brave talk you say? Well, sod it, I'm done with over-stresing, coz there's enough stressy stuff without winding yourself up with more!! So there..
I advertised a spare tv on the Freecycle website. If you have never heard of it, look it up, it's fabulous! ;)
Anyway, the original couple who contacted me changed their minds, so I offered it to the next person who emailed. Sarah. She came with a friend to collect it but didn't take the remote. I felt she was an earthy woman, and liked her.
Anyway, today, 2 days later, she came back for the remote. She also said that she wasn't sure what was going on in my life right now (she saw my bald head wrapped in a buff :) ) and didn't know if it was appropriate, but would I mind if she gave me her card, and if it was my kind of thing, she would like to offer me some healing. . . :))
I said it was very kind and I would love to contact her about it, then I looked at the card and asked if she had done her drumming nearby recently as I had seen a poster, yes, it was her. Funnily enough, I had seen her website some years back when I had split up from my ex, and didn't have funds of courage to approach her then. . . Shamanic healing using drums, and she is a bushcraft instructor.
I will be emailing her anyway ;))
Funny how things work out, isn't it?
No coincidences in life ...
So, off to hospital tomorrow. Armed with a bag full of orange juice, tonic water, nuts, cranberries, apples, etc. I am hoping the food is as it was the FIRST time I was in, not the second, as the second it was AWFUL!
I may get bone marrow results. But I am feeling so uplifted by things this week, that I have decided not to be wobbly about things until they need to be wobbled about. Brave talk you say? Well, sod it, I'm done with over-stresing, coz there's enough stressy stuff without winding yourself up with more!! So there..
Wednesday 4 January 2012
2012 - "a year of transformations not endings" I hear.....
Oh my gosh I HAVE been lazy with my diary!
But then, the girls have been off school and I have lazed around *with* them and/or been ferrying them around! ;)
And I have had visitors and been to meet friends in cafes, and had a lot of Pyjama Days.
I have been quite well physically, my meds came to an end and didn't need anymore, been eating well and only had a sore throat for a few days - have had a week or so of waking up Very Hot at night with a sweaty head but temp has been fine. My 'R' day last week went well, just zonked out form the piriton! Went in yesterday for bloods and line care, and now wait for the in patient thing again next Monday (9th) which is same day the kids go back to school, which is handy.
Have been getting myself in a right old pickle re: the stem cell transplant. Really not focused and quite wobbly about it all; then it came to me in a flash last night = look, so far, I have coped with all sorts of treatment and NOT had awful side effects and responded well to everything. SO - I can face the stem cell stuff in same way surely? I think its being in hospital for 2 or 3 weeks that's worrying me - how the hell will Deri and my mum cope? etc. Anyway, they will have to, and I will recruit help from friends to break up the 2/3 week stint etc.
I am going back in on Monday as I mentioned, for my 3rd and final week of IGEV. At least I know it won't be any worse physically than last time!! I feel I need to mention to them that I have been stressed about new diagnosis and get some assurances from them, as far as you can with pissflapping cancer etc, just to talk things through may help. I MAY have my bone marrow biopsy results back.. eek! (more appendages crossed). I then go in for the day on 23rd to local hossie for bloods. Then I go back and forth to the Heath on 24/25/26th (unless they get enough stem cells in 1/2 days) as day patient to have my stem cells 'harvested'. Sounds like something out of star trek! Then I guess they will give me the dates for going in for the stem cell 'transplant' - could be in for 2 or 3 weeks! I hope they can do it in Feb or March and get it out of the way! I'll be like a wet rag for quite a while when I come out apparently. BUT - it's the best way to reach remission so they tell me, so yeh, bring it on!! (grins nervously)
Spent a lovely NYE with lovely friends and only missed having a cig with them outside once, the rest of the time was quite happy sipping my G&T!
The night before NYE I went over to have a catch up with my friend next door. They are craftsfolk, always busy making their products and they always inspire me. I was having a discussion about being frustrated as I no longer have a room with a desk where I can create stuff since I moved my bedroom into the spare sitting room. She started coming up with ideas using the stone sheds outside but I don't have the money to spend lining it and heating it etc... then I thought, how about the landing? Full of c**p and some chests of drawers of mine etc ...
Anyway, on 1st Jan, I went up there; bookshelf with some books I don't want/need anymore. Have half of them sat waiting for new home now - freecycle or charity shop, the half I want are now downstairs with my other books. Moved suitcases from behind my old chest of drawers (covered in multi-coloured paint - kids used to have it, it's ancient and can be utilised!) and pushed chest back against wall - perfect for using as table for being creative! Then placed the small metal shelving unit, now empty of books, next to it - next job is now to empty the drawers of clothes - keep some, chuck others out, put the one I keep elsewhere - I will then have a workspace :)) I have a spare chair up there too.
What d'ya mean, who helped move stuff? ............Ahem.
So, looking forward to now to getting creative - make some of my lovely lanterns with pressed flowers/leaves etc, make some more cards to sell, etc. I want to get into making soap too, which will involve being in kitchen mostly but the materials can be kept in my 'Landing Workshop' haha! xxx
But then, the girls have been off school and I have lazed around *with* them and/or been ferrying them around! ;)
And I have had visitors and been to meet friends in cafes, and had a lot of Pyjama Days.
I have been quite well physically, my meds came to an end and didn't need anymore, been eating well and only had a sore throat for a few days - have had a week or so of waking up Very Hot at night with a sweaty head but temp has been fine. My 'R' day last week went well, just zonked out form the piriton! Went in yesterday for bloods and line care, and now wait for the in patient thing again next Monday (9th) which is same day the kids go back to school, which is handy.
Have been getting myself in a right old pickle re: the stem cell transplant. Really not focused and quite wobbly about it all; then it came to me in a flash last night = look, so far, I have coped with all sorts of treatment and NOT had awful side effects and responded well to everything. SO - I can face the stem cell stuff in same way surely? I think its being in hospital for 2 or 3 weeks that's worrying me - how the hell will Deri and my mum cope? etc. Anyway, they will have to, and I will recruit help from friends to break up the 2/3 week stint etc.
I am going back in on Monday as I mentioned, for my 3rd and final week of IGEV. At least I know it won't be any worse physically than last time!! I feel I need to mention to them that I have been stressed about new diagnosis and get some assurances from them, as far as you can with pissflapping cancer etc, just to talk things through may help. I MAY have my bone marrow biopsy results back.. eek! (more appendages crossed). I then go in for the day on 23rd to local hossie for bloods. Then I go back and forth to the Heath on 24/25/26th (unless they get enough stem cells in 1/2 days) as day patient to have my stem cells 'harvested'. Sounds like something out of star trek! Then I guess they will give me the dates for going in for the stem cell 'transplant' - could be in for 2 or 3 weeks! I hope they can do it in Feb or March and get it out of the way! I'll be like a wet rag for quite a while when I come out apparently. BUT - it's the best way to reach remission so they tell me, so yeh, bring it on!! (grins nervously)
Spent a lovely NYE with lovely friends and only missed having a cig with them outside once, the rest of the time was quite happy sipping my G&T!
The night before NYE I went over to have a catch up with my friend next door. They are craftsfolk, always busy making their products and they always inspire me. I was having a discussion about being frustrated as I no longer have a room with a desk where I can create stuff since I moved my bedroom into the spare sitting room. She started coming up with ideas using the stone sheds outside but I don't have the money to spend lining it and heating it etc... then I thought, how about the landing? Full of c**p and some chests of drawers of mine etc ...
Anyway, on 1st Jan, I went up there; bookshelf with some books I don't want/need anymore. Have half of them sat waiting for new home now - freecycle or charity shop, the half I want are now downstairs with my other books. Moved suitcases from behind my old chest of drawers (covered in multi-coloured paint - kids used to have it, it's ancient and can be utilised!) and pushed chest back against wall - perfect for using as table for being creative! Then placed the small metal shelving unit, now empty of books, next to it - next job is now to empty the drawers of clothes - keep some, chuck others out, put the one I keep elsewhere - I will then have a workspace :)) I have a spare chair up there too.
What d'ya mean, who helped move stuff? ............Ahem.
So, looking forward to now to getting creative - make some of my lovely lanterns with pressed flowers/leaves etc, make some more cards to sell, etc. I want to get into making soap too, which will involve being in kitchen mostly but the materials can be kept in my 'Landing Workshop' haha! xxx
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