[VickiParticipant]

Jean,

I know what you mean about not wanting someone ill but shouldn't something be happening. I remember it all being very quiet at first, Colin felt sick and that was about it. I wondered why his bloods hadn't dropped like a stone and it seemed like an age for them to start going down. It was normal. I don't know what we expected, some kind of alarm going off when it got to zero but it was nothing like that. Intact if we hadn't asked they wouldn't have told us what the scores were….I fact at one point early on his bloods went up, again they said normal. We decided not to ask in the end as we were worried about the down time, we knew when it was though because his food menu became very limited due to neutropenic….Colin didn't eat much anyway! The sore mouth and pain that Colin was in was the worst, however not heard anyone else mention pain 🙂

All seems to be going ok jean and frank…..stick with it 🙂 🙂

Thinking of you

Vicki and Colin x

[jmsmythParticipant]

Hi All

Frank feeling sick and terrible runs. Have given him tablets for cramps and sickness. Drips down. He had a power failure when doctor was talking to him 😛 . He slept for four hours and said that he has never experienced such a deep sleep. Doctor did not say anything about bloods but told him that "he was ahead of the pack" but not to get complacent as it will get worse. Thanks for all your good wishes

Best to all
Love Jean xx

Ps woke just in time for United match – think he's got built in radar? :-S

[HelenParticipant]

Hi Jean
Things seem to be progressing according to plan, how are you all doing while you watch him? I hope it's not too difficult for you and Frank continues to be interested in the football,

Vikki – I know what you mean about pain, at our hospital, if you live close by, you can be an outpatient and just come in every 2 days for bloods after the SCT, …. so that was my plan! This was not to be….after day 3 I was admitted because of the pain from my throat to my stomach and put on morphine. One of the nurses said it was unusual to have so much pain, but later I found out that almost as many patients get severe pain and need morphine as those who do not. So once again myeloma and its treatment depends on the individual. Up til then I always thought I was just wimpy!
Love Helen

[tomParticipant]

Hi Jean and Frank

Well first no way would you wake me for bloomin Football Lol
Second I can tell you Frank is doing Bloomin well 😎 I at that stage was asleep most of the time and only woke up to say Good Bye to Elaine and whoever turned up that day/nite, and as the Dr said "he is ahead of the pack" is soo true so thats Good but it still will be an uphill battle to get to the "I Feel Well" but its getting closer 😎

Love Tom Onwards and Upwards xxx

[LouiseAParticipant]

Dear Jean,

I hope Frank is managing ok. My dad (Garry) is on day 9 so only a few days ahead in his SCT. He's had the runs and felt sick too, he also said that he has never slept so deeply in his life! He ended up with a syringe driver of anti-sickness and morphine for stomach cramps and he is much more comfortable now – he even managed to enjoy the Rugby today. Dad is now in his third day of neutropenia. Earlier the nurses were concerned that his temperature spiked and questioned a chest infection but the x-ray (which was wheeled to his pod) turned out to be ok and his temperature seems normal now. Fingers crossed those neutrophils start to come up soon.

Take care and best wishes for a smooth recovery,

Louise

[jmsmythParticipant]

Hi Tom, Helen and Louise

Thanks for posts. I have asked Frank to ask about bloods but as usual the doctor will tell him annoying he wants to know. To,or row befor I go Iin I will see if I can speak to a doctor. Tom my life would not be worth living if I let him sleep through a United match – mind you the way they played 2nd half, I wish I was asleep.

Helen when Frank is sleeping I watch a movie on the iPad. Today it was the 3 stooges and it was the biggest load of rubbish I have ever seem. I should have watched paint dry it would have Ben more interesting.

Louise I have been following your dads SCT and he is having a rought time. So far Frank has managed with tablets for cramps, sickness and diarrhoea. He refuses to eat – he rekons that if nothing goes in then Nothing can come out but that has been proven wrong. The doctor did say he was having it good in comparasion to others In the unit but he did tell him that it will get worse. He said he was feeling terrible today and it must have been bad as it was the first time he has not showerdmor shaved. I read you mums post about the cat. I asked the transplant co-ordinator about our sons dog. She's old me that ani,ALS are not to be anywhere near the place that food is being prepared or eaten.

I hope tomorrow bring improvement to your dad
Best wishes
Jean x

[DaiCroParticipant]

Agreeing to undertake a Stem Cell Transplant is a one-way ticket to the future. After the Melphan and the return of the Stem Cells you really have entered a nonnegotiable contract with your body. With any other course of treatment you can say 'Enough, I want out of this'… but with a transplant you have no other option but to see it through to the other side, regardless of of the smoothness or the roughness of the ride. :-/

I can remember vividly looking at a reflection of myself in the bathroom mirror of my en-suite apartment in the hospital. I had been in the apartment for 11 days (officially Day 9) seeing no-one but the medics, cleaners and catering staff and I wondered what I looked like to them. I examined the face that stared back at me and I really did struggle to recognise any semblance of 'me'. My face was drawn, gaunt, grey and almost skull-like… I looked as if someone had syphoned off all the goodness and vitality from my flesh, leaving an empty, dehydrated carcass. I was fascinated rather than horrified but it was the point where I said to myself 'It's time to turn the corner',,, I couldn't imagine looking any less than myself than at that moment. Two days later I got my 0.1 Neuts and within three days of the magic number I looked almost normal… 'Looked' being the operative word… I felt like a new born babe. I had to wait one more day for my platelets to catch up and then I was allowed home… on the very day that they cleared Janet as fit to visit. 🙂 😉

My mantra was and still is, 'Whatever It Takes'… choose your route, get on board (mentally and physically) and see the journey through to the end. The SCT has been the only time that I had no option, no choice in the matter once I had started that particular journey. For all the inconveniences, physical anomalies and mental stresses it was not as bad as I had built myself up to expect and it was over much quicker than I thought it would be as well. 😎

So chins up, embrace each day and countdown the ticks on the calendar… and before you know it you will be on the way home… as you… leaving the ghostly ghoul of the SCT behind you in your room. :-S

All the very best to all who have chosen the SCT route… it will be worth it. 😀 😎 🙂

Dai.

[PeterJamesParticipant]

Hi Dai
I only escaped from Christie five weeks ago so memories are still very clear
You are right re the NR contract
Pre SCT , after all the tests , the consultant went over all the pros & cons, passed me the first of several consent forms to sign
The small print at the bottom said we can also kill you as we'll as cure you
I said if he killed me I would sue his a—- se off
Then as you watch the killer chemo go in , I thought once it is in , there is no draining it out !
Then 10/12 days in a pretty dark place
Had to laugh at myself , when getting urgent call of nature of the sitting down type
By the time I had unplugged the dose pump from the mains & dragged it into the WC , usually too late !
I have had a beard for nearly all my adult life , used to be ginger , then it all fell off & I looked at a stranger in the mirror
Family want a vote to see if it comes back & stays or I start shaving, believe me it's staying !
After 48 hours my neuts went from zero to 3.8 , so I was thrown out
Like you I told the nurses to do whatever , but get me into remission, if it meant pulling my toenails off , do it !
I found the best way to survive locked away on your own was to forget all about the outside world & concentrate on slowing my world down to the speed of a crippled snail , worked for me !
Then go home , forget it & get on with your life
After two weeks home bloods & bone marrow back to normal , after three weeks back on sat night curry
Only just cracked small amounts of wine & chocolate
All the best
Peter

[VickiParticipant]

Hi jean and frank,

We feel for you, that time period of tummy trouble, sickness, pain etc is awful. I felt so helpless and Colin so wretched.it feels like it is never going to pass, but when the worst does pass it seemed to quite quickly in Colin's case. I also remember days when I had to help Colin dress, wash etc as he was just not up to it…..food was a no no for a good while. He still doesn't want jacket potato As that was the only thing that seemed on the menu when his blood went down, and they weren't very nice either (and the only filling was cheese!).

Frank will do well to sleep, that's healing and he's sleeping through some of the badness. Still not long now and your wait will be worth it. We gave up asking about the bloods.we thought we'd know soon enough and got impatient when they weren't coming up quick enough 🙂

Keep going and wise words from Dai as normal.

Keep enjoying the curries Peter x

Vicki and Colin x

[tomParticipant]

Hi Jean and Frank
Your welcome and hows things doing ?? you dont want to sit in hospital watching bad movie's get Elaine on Ipad for Face Time it will do you both good Lol.

You all stay well now and Dai you are correct.
We should have a thread Just for you dai as your words are words of Comfort and Wisdom my Friend 😀

Love Tom Onwards and Upwards xx

[VickiParticipant]

Jean and frank,

Just popping in to say thinking of you….hope frank is feeling a little better. Glad he's not a rugby fan….we are not happy with the latest England result!….sorry Dai 🙁

Vicki and colin

[jmsmythParticipant]

Hi Vikki and Colin

Day 11 and the keep changing antibiotic. Diarrhoea and still not eating. Neutrophils today 0.26. Suppose it's better than 0. He woke up to watch rugby – Vikki he loves rugby and soooooo sorry but he's with Dai 🙂 Hoping for some improvement within the next few days. Thanks for asking. Hope all is still good with Colin

Love Jean x

[DebsParticipant]

Oh Jean
I'm a rubbish friend! I didn't even realise that Frank had gone in as I've hardly looked at the site recently.
It sounds like he's on his way up though and you'll be surprised how it will change now….probably not too long before he'll reach that magic number.
How are you doing with it all? I always felt for Nick….he'd travel 3 hours to see me and I'd be asleep most of the time! So then he'd go home to get some kip and go to work again the next day….and then he'd do it again! I was too zonked at the time to really get how much he was there for me but in retrospect I love him so much for it all!
Feel free to email me if you want….with me not being on fb at the moment, and only popping in and out of this site, I miss so much, but I'm always there if you need it!
Send my best to Frank too….it's an upward journey now and that has to be good 🙂
Glad he enjoyed the rugby….someone had to!
Debs xx

[VickiParticipant]

Hey jean and frank,

Frank must have a built in sport radar….waking up for football and then rugby LOL! It's hard to see frank with the tummy troubles and not eating but it will pass. And his neutrophils are past the magic zero which Is great :-). As debs said things will speed up and frank will make a sure slow improvement. Be careful for yourself too jean, I haven't been 'right' since the sct (Colin would probably has I never have ha ha!). It's very stressful supporting the one you love through this very horrible time. But there will be bonuses when things get better.

Take care both……by the way not reading the news papers today, too depressing. The national sport of rugby for us needs to change to something like tiddlywinks…..we might stand a chance of winning then ! 🙂

Vicki and Colin x

[jmsmythParticipant]

What a day. Day 13. Frank has been feeling terrible all day. Neutrofills – with the help of an injection – are 1.2. Platelets are 8. Decided to give him another platelet transfusion. No sooner in when he came out in the most horrendous itch rash all over his body. The worse is in his groin. Gave him – I think peredon which did nothing and now the are going to give him steroids – cortisone. This has scared the life out of me – is this normal – has anyone any experience of this? He has been pumped with so many drugs. I wish I could see this light at the end of the tunnel. He has at last fallen asleep.

Jean

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