Hello everyone from Ward 9. I am soldiering on, and making slow progress, but steadily feeling better which will be encouraging to Colin.
The old runs are set in to stay, but under control really – running shoes not necessary! I am waiting for the pp's to pickup, and havn't had them today, yesterday still on 0.03.
On the whole I am ok, and having a few Tesco 'finest' meals – may as well treat myself, and having a few things like fruit and crisps now that my mouth is less sore.
Managed to see the final Dallas last night – for those that havn't seen it yet it is a fitting season finale, and will be back next year which is great news!! 11/10 from me! 🙂
Over 2 weeks now since chemo, and no release date yet, but hair beginning to fall out again sadly 🙁 .
Enjoyed the USA election coverage, and the result! Go Omaba!
Cheers everyone,
Chris
HI Vicky and Colin, and everyone.
I hope your day has been ok.
I am on a lot of antibiotics now, every few hours, and the old temperature is under control at the moment – good thing – but seems to have triggered the 'trots', although that may be the chemo.
Another good thing, the 'north and south' is much better (google rhyming slang for translation :-)), and a bit of my tongue is even pink, cool! Coke seems to be the 'real thing', so glugging loads of that.
Long way to go on the blood front, np only 0.04, and I had some platelets yesterday as well.
Lena has been a super-wife as ever, and I am experimenting with some ready meals from our Masters, Tesco (bow, tug forlock etc), which she brings me and keeps me sane (and a safe distance from hospital food!).
Keep smiling everyone……now, where did I put that West Wing dvd?
Chris
Well Tom, I have to bow to your greater experience! Large stack of loo rolls in fringe and rapidly being employed, running shoes on feet….! :-S
By the way, was your 16 days from Chemo day, or tubes and prep?
Chris
HI All!!
Feeling ok today despite a spiked temp yeaterday, and I slept hours, then up half the night reading the Casual Vacancy!
Had enough antibiotics to knock over a donkey, so I am sure you're right Tom, one hand on the bog roll!
Apart from losing weight and having a bad mouth, I have been good this weekend and have seen lots of visitors which has been really nice. Oh and a really itchy back – aaargggh!
My nuetrphils are only 0.02 still, and I had some platelets today – thank you, some donor out there x .
Vicky, good luck to you both, and thank you for the encouragement – a big steak dinner for us all when this is over?
My friend gave me the entire West Wing box set, so 2 episodes down, 130 hours to go, it will be a long night……….
Chris xx
HI Peggy,
I think you have found the answer, you have to have the GCSF which makes the cells come out of the bone marrow into the blood, otherwise the whole principle of the thing doesn't work.
I had the week of injections like you, but they didn't make it clear that you are supposed to take them in the evening, as the effect is at it's max 12 hours later. I didn't.
I had the cycloprime, but it seems like this depends on the advice of the various centres.
Sometimes standard Gcsf works, but not for me, or Vicky and Colin who replied. There is another drug, far more expensive, but they will try the standard issue first and see what happens. You won't have the lung tests etc until they have collected your cells and they move to the next stage.
Sorry if this is a bit factual, but if you want my full account, look at my story 'Stem Cell Collection second attempt' under 'treatment'.
very best wishes for your succesful harvest of millions of cells! 🙂
Chris
HI Vicky, we are so sorry you are having a rough time, but it's not surprising you are feeling down after so many weeks of pressure, there is no relief from it I know.
Can you have any time off work,or can anyone else sit with him? Colin will need you to be fit and well so look after yourself!
The week after the stem cells is absolute s**t, there is no other expression, I hated the smell, sharing a room, the food, noise everything, and that was only with 4 bags.
A week on, I am feeling a lot better, and I am sure Colin will be too, he will sleep through most of the cr*p like most men!
hang in there,
Chris and Lena x
Hi Everyone in the 'real world', and particularly Vicky and Colin for the message today.
I am probably at my lowest point now according to the doctors, being 10 days after the Melphalan, and I am beginning to feel a bit better. The main problem is that I write one e-mail then sleep for about 2 hours, so things happen very slowly!
The main side effect has been my mouth which is quite sore, and why I havn't been eating much, but hopefully that will improve soon.
I have had no sickness or runs, so I have been pretty lucky (my food voms don't count), so stick with it Colin, and you may find the same.:-)
Lena has just brought me in the new Kylie CD – really enjoying that, and keeping up with Dallas (10/10!), and I am up on all the latest films and events thanks to the telly!
I have loads of visitors booked in this weekend including my daughter coming down from Manchester Uni, so I am excited about seeing her.
My netrophils are now hovering around 0.01/0.02, and like Colin they rose a bit before falling initially, so I am watching them like a hawk for when they start rising again.
Keep smiling everyone 😀
Love Chris
Well done both of you, sounds like you are doing well so far. The procedure is the same as me, keep drinking lots, and wait for the chemo to work. My neurophils are 0.3 now, so pretty low after 6 days.
Keep us posted, and keep smiling Guys! Chris x 🙂
Big Hi to everyone reading this! Sorry I've been quiet for a few days, but I have found it takes a big effort to plan to do anything much other than gaze at the TV, which isn't all bad I guess, a chance for a rest.
It is now a week tomorrow since I had the Melfalan, and my mouth is like the bottom of the proverbial parrot cage/badger sett! I am on 3 types of mouthwash, each tasting worse than the next, but in reality I have not been sick which is good. I did puke some of my lunch today, but that was more from a reaction to some particularly vile vegetables in my lunch, and I carried on and ate my pud (how gross is that!)
I have found that I like horlicks, milk, cheese sandwiches, and jelly from tesco.
I have been in isolation since Sunday which has been much nicer, quieter, easier to go to the loo, so better all round.
The doctors and nurses are being great, and I even had reflexology today – a treat indeed! (but no substitute for my wifes massage!).
Time is dragging a bit now after 10 days, but they say I may have anouther 2 weeks, so we will grin and bear it. Lena has been a real star keeping an eye on me and beeing here even when I have been asleep, which is a lot.
love and good luck to you all, Chris xx
HI Vicky and Colin, we must have been writing at the same time!
Very best of luck for Monday, I am right behind you (or in front I s'pose :-/ ).
I don't remember any prison visits in the old Dallas, but the fighting is much the same! Enjoy!
Chris x
HI All out there in the real world, all I can see are the pidgeons and robin out of the window! Looks grey out there though.
It was the big day today, and my stem cells were shipped down from Bristol at the end of the morning, and the procedure was explained to me. I had a pre-med of Piriton against the preservatives in the cells which have a smell of sweet corn, and it's true, but I can't smell it now.
I felt fine and had 4 bags of cells which was over very quickly, and felt fine. All the fluids are done through my line, so no needles to worry about.
I have still been eating, and taking the mouthwash, as I have a bit of soreness now.
I was tired this afternoon, but I would say to Colin don't worry about next week, it is easier than giving the cells in the first place!
Thanks to Dai for you advice, my bloods have had a blip before they fall, and my wife is encouraging (well nagging me) to drink lots! She was supporting me all day today which helped me through as I was pretty anxious.
Thinking of you all Guys, keep kicking this damn illness!
Love Chris 🙂
Oops! Sorry Jean, didn't want to spoil your viewing, should have thought of that, but enjoy! Old JR definately wins the 'mean'prize for me! >:-)
Thanks, I'll keep going and looking forward to getting home again,
Chris
Thanks Phil, I've been warned obout the sweetcorn! Cheers, Chris
Hi Everyone,
I had my chemo yesterday which went ok, but left me with a nasty headache which knocked me out a bit.
I am taking handfulls of tablets for anything from sickness to antibiotics to steroids, but other than rattling a bit I feel reasonably ok.
Lena has been able to stay with me a lot which has been nice, and made the time go faster.
Managed to see Dallas last night which was epic as ever! Poor old John Ross had a rough time in jail, but all the family buried their grudges and helped him out, with plenty of bribery and corruption of course – but how long will that last? Good stuff!If it comes back for another series though, please let it be on BBC1, the ads are longer than the programme!
Tomorrow I am having my stem cells back, and may go into my isolation room as my neutropils are falling now, so far I have been sharing.
So my recovery will start tomorrow, but no-one can say how long it will take at this stage, early days, but so far pretty good.
Best wishes to the 'Club'
Chris and Lena x
Thanks Ali! Hug back 🙂
