[tomParticipant]

Hi Jean and Frank

Well I had a fair bit of Platlets and blood given whilst in Hospital and to be fair when I dropped I didn't feel well untill the day before i came home (was in 16 days) I had the rash but the think I worried more about was the sickness and still running to the loo, but it all came togeter slowly, I know its Hard to sit and wath Frank as he Looks (and am sure feels) like he is falling apart its a waiting game now but one that is worth it 😎

Love to you both

Tom Onwards and Upwards xxx

[meganjaneParticipant]

Hi Jean,

I am so sorry to hear Frank has got a rash on top of everything else. Every time Phil was given platelets the nurse did warn him that a possible side effect of the transfusion might be a rash, luckily Phil avoided this particular side effect but I do think it is normal. It is a long journey while Frank is in the hospital but one day soon he will turn the corner and then the light at the end of the tunnel will become brighter. Phil was still very tired and always sleeping when he got home after the transplant but now, two and a half months since he came home, he is back to gardening, helping with chores and going to the pub:-) so although it takes time it is doable.

Make sure you are looking after yourself as well Jean as Frank will still need a lot of support when he gets home.

Megan

[jmsmythParticipant]

Frank phoned and says he is feeling a little better. Doctor told him this morning that he is doing well. He said that they were keeping him on antibiotic as his kidneys are leaking something. Frank can't remember what it was. Anyone know? Get over one thing and another raises its blo**y head. Damn this illness

Thak you all for your support
Love Jean xx

[foxy555Participant]

Oh Jean

Do understand what you are going through as the carer, you think – no light at the end of the tunnel, but it will get better! I promise you! I am sure that the people on this site, who have actually gone through it, ie Peter, Phil,Tom, Colin and Chris the Biker – to name a few, will also reassure you.

Is'nt it strange though how each person has different side affects. Pete also had a horrid rash whilst in hospital, but it has now gone. He is now concerned because he has'nt had to shave for 10 days, when will the hair growth come back?????? Tom and co, can you answer that?

Day 6 at home, Pete still has no taste buds and it is driving him mad!! I have been to Sainsburys today looking for inspiration, but I do now realise it is just time. Pete is exhausted just taking a shower!!

I am back at work tomorrow!!!!! I know Pete will be fine, but will be strange leaving him.

He is back at clinic on Friday for blood tests and to see the consultant, but I really don't know what happens next?

Anyway, best wishes to you all.

Love

Ann and Pete
x

[VickiParticipant]

Jean and frank,

Sorry to hear of the upheaval. I think the rash is a normal thing with regard to the platelets! This cortisone thing is like an anti histamine. So that will stop the itching and the rash getting any worse I would think. 🙂

With regard to the kidney thing, I have not heard of that but remember they are prepared for all that because the high dose chemo is powerful so they have drugs to combat all sorts. Nearing the end of Colin's transplant time in hospital I was shattered and when anything new comes up its hard to think let alone cope….I cried quite a lot which is unusual for me in public but mm is not the norm is it :-(. However what I an trying to say in a long winded way jean is that the medics always have something to combat the problem…..frank will come through! You take care of yourself too….I'm still tired and I am sure this vertigo is stress related !

Take care

Vicki and Colin x

[tomParticipant]

Hi Jean and Frank

Well am sorry to say I cant help re the Leak from Franks Kidneys :-S but am sure the Dr's are on it with the Anti B's .

Its a long haul andf am sure it was longer for my Young bride (Elaine) than I ??. you know you will have to stick with it Jean but it has been said before "Make sure you Rest also" as the work realy starts when Frank is home.
Love to you Both xxx

Hi Ann and Pete

How long did it take to regrow?? Well I was pleased it never came for for such a long time 😀 and when it did it was "Different" My hair was a bit darker, and when I let it grow into a full beard with tash it left patches on face and neck the tash was more like a 50' pencil tash (not shaped by me)it just grew like that, knew when body hair was on its way back as my whole back was itchy as hell as the hair sprouted.
Give it six months + Pete then you will get fed up shaving.

Keep strong you all

Love Tom Onwards and upwards xxx

[PeterJamesParticipant]

Hi Ann & Pete
My taste buds are a long way off being perfect , been home six weeks this Fri , also mouth still fairly dry
Specialist says this lot will come back in time ,
Hair on chin & moustache started growing about ten days ago , not much sign on top but I didn't loose that much
At least it's growing back white , wondered with all the poison put in if it would orange or another bright colour !
I can taste strong soup, cheese & raspberries , also back on coffee
I can still get tired but I am trying to live a normal life
All very worth it when you emerge from the treatment tunnel
Peter

[VickiParticipant]

Hi jean and frank

Thinking of you….how's it going?

Vicki and Colin x

[jmsmythParticipant]

Hi Vicki and Colin

Thanks for thinking of us. Things were going good – neutrofills went up to 1.8 so he came out of isolation. Next day dropped to .2 so back to isolation. Today he is feeling better even got a bit of appetite back. I brought him in melon an ice cream and he wolved it down. Antibiotics finished and so have all IV's. he reckons he will be home this weekend. His hair has gone but he has only lost 2kgs – he hasn't eaten for 2 weeks. He had to get more platelets. Bloods will be taken tomorrow so will have a better idea

How's Colin hope he's doing well
Love Jean xx

[FOXLEYParticipant]

Ann and Pete,
I had my transplant at the end of November and I found that I did not have to shave again until end of January. Other body hair, in all sorts of interesting places, continued to fall out during this period as well. I am still getting very itchy skin and, apart from dryness, nurse suggested that could be a result of hair starting to grow again. The part of my finger nails that was hit by the chemo must have grown to the finger tip about 2 weeks ago as well because my nails are all crumbling at the end. These are all pretty minor irritations I suppose within the scope of what MM can throw at you.
Chris

[HelenParticipant]

Hi Jean
I see Frank is doing ok still? Any sign of coming home yet?
Love Helen

[jmsmythParticipant]

Hi Helen

How was the holiday? Hope you had a ball! 🙂 Lovely hot weather. We were snowed in for days. Fortunately one of the boys has a 4×4 so he could get in to take me to hospital. Then they all came and dug my car out and made a path for me to drive.

On sunday night Frank was feeling weird and they put him on the ECG. They asked if he felt like he was wearing socks and gloves and he said that was exactly how he felt. They said they actually called it "socks and gloves". It was the calcium level was too low. Franks bloods were good yesterday. Neutrophils were 5.2. and consultant said if they could get the calcium levels up he could home. Then the dreaded diarrhoea came back. He has got a bit of an appetite but they weigh him every day and his weight had not varied that much until yesterday when he lost 4 kilos overnight !!!! I'm running round the house like a mad thing – I should take shares out in Detttol 🙂

Hope you had a real good rest Helen and that you benefited by your holiday

Take care
Love Jean x

[meganjaneParticipant]

Hi Jean,

I did the same thing just before Phil came home, dettol on every surface, all light switches and door handles cleaned and I carried on doing it daily for the first month but as his blood results got better I was able to ease up on the daily cleaning. It is funny how the new found understanding of germs changes your perspective, I clean my desk at work daily now to avoid other people's germs! 🙂

I hope Frank's calcium levels are quickly sorted, Phil had the same thing when he was in hospital and he just had to take extra adcal daily until the numbers came up.

Megan

[jmsmythParticipant]

Hi Megan

It's good to read that other people have the same problem that was rectified. (Boy that sounds weird but hope you know what I mean 🙂 . They were supposed to take the Hickman out yesterday – didn't happen and then they said today. Frank just phoned to day that it would not be happening. The dr told us yesterday that the longer the line in the more chance of infection. His platelets were 8 they gave him transfusion, went up to 16 then came down to 8 again. Gave him more and they are back at 16 but that is too low. Said if they did it there would be blood everywhere !!! Has to have more platelets but they have run out and are getting some from somewhere else. Don't understand it as the hospital has a massive transfusion unit, the biggest in N Ireland. His electrolytes (not sure what they are) are right down so have to get them up. He says he feels ok

Good that Phil is doing well reading things like that helps lift the depression

Take care best to you both
Jean x

Ps at hospital now and have been told there is something not right with kidneys. Head man in this hospital on holiday so dr trying to get. in touch with kidney man in the Royal to see if they can continue with medication. where the h*ll is that light at the end of the tunnel :-S

[HelenParticipant]

Hi Jean
Lovely holiday thanks, bit of a shock to the system coming back to yet more snow! I had low phosphates and calcium after SCT and had lots of bags of the stuff very slowly so had to drink loads to get the fluids in, not easy when you feel sick!, I've also been on calcium tablets ever since as it stayed low, it's a very odd feeling of tingling in your lips hands and feet and you get cramp too so not much fun. Hope the kidney problem sorts it's self out soon.
Love Helen

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