[tomParticipant]

Hey you two its great to hear Colin is awake make the most of it cos sleep will come 😛

I never bothered about Food to be fair when i was in hospital and not too much passed my lips for a long time when i came home just plenty of water was good for me 🙂

Keep Well Coin

Tom "Onwards and Upwards" xx

[HelenParticipant]

Hi Vikki
I'm just back from another holiday 🙂 Cornwall this time ( cold and rainy) and I see a lot has gone on in my absence:-) this is the tough bit where you have to look at Colin and not wince if he looks c**p, I felt sick from day 1 ( melphalan) and really really REALLY awful from day 5 to day 12 🙁 😐 they let me go home on day 16 but only because I lived really close to the hospital and they were desperately short of beds. I was still taking the anti sickness tablets at 3 months post SCT. My mouth and taste senses are still not right 15 months later but just make him take the tablets and drink, ….warm water is curiously easy to drink 🙁 and so is peppermint tea if left to cool a lot. Don't worry about food at the minute fluid is the most important, flat coke is very good as it has loads of calories too!
Love Helen

[AliParticipant]

Hi Vicki and Colin

Hope things are still going to plan. As Helen says try to stay cheery when you walk in the room, though its so hard. My Mum was pretty much the same as Helen. The second week especially I would walk out of the ward and burst into tears, its so awful to see your loved one in that way. But, when things were on the up she did seem to improve quite quickly:-)

Chin up, you can do it, you both can.

Love Alixx

Hi Helen, Hope you had a nice time despite the weather. Hows the whoop? are you feeling any better?

xx

[MariParticipant]

Dear Vicki,

I am glad I was able to help. I know how hard it is to just watch without being able to do much to help. I too struggled with what to find to tempt an appetite. I agree with Helen that sometimes fluids are most important. I found some cold fruit teas in M&S, Steve enjoyed raspberry and Rooiboos (sp), 130 calories, and there is a peach and chamomile, a bit sweet and another I cant rememeber. Cocolate buttons went down well as well as mini melt in the mouth jaffa cakes also from Marks. Ice lollies he enjoyed. Yoghurts are good as long as you find the non bio ones, they are cool and slip down easy, jelly is also good. He also would eat a tiny bit of cheese on a sliver of toast, maybe a quarter of a slice in total,very slowly, piece by tiny piece, but it was better than nothing. The ward had a little kitchen and would do a few things for him. As he started to regain his appetite he fancied a pecan Danish and the first time I really saw him eat properly it was pie and chips from the ward kitchen that just did not touch the sides! This was a day before he went home, 20 days after he went in. So you see, things will improve.

Steve is going back to King's tomorrow for his one month appointment. His Haemoglobin is 8.7 and he is having two units of blood later this week. His neutrophils are now 1.32 and his platelets are finally on the up, having hit a low of 0.3 and are now 37, his platelet infusion has been cancelled. It takes time but it gets there. He gets a bit breathless but thats the anaemia. His consultant has suggested a little light exercise and has said he can ride his bike again, but best of all he is having the Hickman out next week. I know this means a great deal to Steve.

We are both wishing you well as his neutrophils still drop. He is going to feel rough and sleeping is probably the best for him. If you can try to share the load with any family members or really close friends that will go to see him sometimes to give you a day off. Steve says there was not a day when he did not have a visitor but I did stay home about twice a week and it helped my sanity. You will suddenly start to notice an improvement and once things turn around you will be surprised at how soon he will be home again,

Much love, Mari xxx

[MariParticipant]

Just a quick note on taste, we had a bit of a celebration this weekend as Steve got his 'Beer taste' back and he enjoyed a bottle of beer with his supper,it had tasted horrible before, things really do improve a little bit all the time!

[eveParticipant]

Hi Vicky
It will soon be over and Colin will start to recover so fast,it is heavy going,for both of you,I went in to the hospital every day except once when I went to a funeral,the funeral seemed light relieve compared to going in every day,

When Colin comes out the hard work begins,so you must try and rest now.
You soon forget,they do realise it is a heavy toll on patient and carer.
It is worth while,although going through the process it does make you doubt it.6 months down the line and planning are future.Love Eve

[HelenParticipant]

Hi Ali
Thanks for asking, I'm still coughing! It's day 84 today, not as bad of course, but annoying for everyone else and tiring for me, but I'm ok I'm not letting it get in the way though its a constant reminder at a point when I feel I want to put ill health behind me, Anyway, planning next holiday:-) following Tom's mantra now!
Love Helen.

[VickiParticipant]

Hi all,

Helen thanks for your advice, sorry you've still got the cough, blimey it's been going on. The wet weather in Cornwall won't help but hey we don't go to Cornwall for the weather, just the beautiful,scenery etc. We love it there. It seems like a long way away at the minute! I meant to bring coke in today Helen but was in a rush and forgot. Hope you get some better weather on the next holiday!

Ali, I know what you mean, last night I walked out of here with a heavy heart, and walking in today felt the same. It's really hard. Colin does look awful and he's got a drip in now for fluid. I hate it when he winces, getting things swallowed, and to be honest it's not much anyway. Although I think he likes the pineapple in juice, some jelly and custard. Colin also seems to get on ok with soft cereals and a very small amount of toast.

Mari, I'm so glad to hear that Steven is on the mend. Even having some beer. I can't wait to see Colin have something normal to eat or drink. That must surely meant were on the way then! That's for the information on the food. I am happy to try anything but they are very particular here on what I can bring in.

Eve, as regards mixing up who comes in to see Colin. He doesn't want to see anyone else :-). I think he doesn't want people to see him when he is so rough….even family. So it is just me. It is pressurised but as long as I can try to relax when I am here then it's not too bad…. However that's easier said than done as I am watching his every move and he looks so awful!. But it is good to hear yours and all other stories about how things can improve and a normal life comes back to some degree. We've forgotten what that's like

Still, good luck to all, whether you're improving, still getting some checks done, or well into what hopefully is lifelong remission! Hopefully things will look brighter tomorrow and thanks all for the support. It really is helping 🙂

Vicki x

[tomParticipant]

Hi Vicki and Colin

Your doing Good Colin thats the way it rolls My Friend stick with it and slowley it will get better but it will be slow for you and Vicki.

Vicki am sure Elaine (my young bride) walked out of and into my room many a time during treatment with that heavy heart al ask ang on ??

Am Back yes she said she felt and did the same, heavy heart and hopeing that tomorrow will be better for both of us ?? it wasn't better the following day but it DID get better 😀 and to be fair near three years down the line I want to shout out to all that yes it is rough for us all but it is well worth it 😎 and if needed i would do it again 😉

Dont forget I was OK when I went in for my SCT and they Made me real Ill :-/ then they eventually made me better 😎 and for all those that are or will go through it TRUST me its well worth it, stay strong and dont forget the fight will still be needed when you get home.

Love and Loads of Hugs

Tom "Onwards and Upwards" xxx

[bikerchrisParticipant]

HI Vicky,
Sorry that Colin is so rough, as Tom says, it is so hard when we go in feeling fine and fit, but quickly become so rough, but we have to focus on the larger picture, and it will be worth it to have a normal life again.
Every little step is a positive, whether a small meal, or a shower, or a visitor, and I am just tackling one day at a time, with Lena giving me a link with home.
I havn't really encouraged visitors either, unless people have made a special effort, there will be time when I feel better.
Keep going, and our very best wishes,
Chris and Lena x

[adamsp41Participant]

Hi Vicky and Colin… sorry to hear that Colin's SCT is going rough…believe me Vicky I can associate…I chose not to allow any of my family to come and see me ( only the wife )as I did not want them coming in to see me as poorly as I was…but…I always recall one particular nurse who on every shift she was on duty came in and said "always remember you WILL get better" over and over again…this has always stuck with me and when I have been admitted since SCT with infections she is still on the ward still as chirpy and positive…this is what dragged me at times from a low place to a positive place…send Colin my best wishes and hope he turns the corner sooner rather than later…He will get better..Phil and Jan

[VickiParticipant]

All,

Thanks so much for the encouragement, both for Colin the major player, and me the minor part 🙂

Colin was ghastly yesterday, but today to my amazement he sounded a bit better and actually phoned me from hospital this morning for a bit of a chat!. I understand what you mean about those special people, well they all are, but there are one or two that are extra special, who give more confidence, faith and yes cheery encouragement. SCT nurse just been in, said all normal, and get the weekend over Colin should start to pick up a bit :-). Food a problem due to bad mouth but thanks to Tom and his experience trying not to worry as much as long as fluids ok!

Chris and all, well have a very very big cyber Internet party when this is done! 🙂

Colin sleeping again now and I'm trying to chill out! Phil and Jan, did you enjoy your holiday?

Best to all 🙂

Vicki and Colin x

[adamsp41Participant]

Hi all …Ibiza was shut…beaches empty..most of the bars closed..pool shut…my 16 year old son nearly lost his mind with boredom we coped though…in our eyes there is no such thing a bad holiday…stay safe…Phil

[VickiParticipant]

Hi Phil and family,

Sorry ibliza was shut……I thought it was a rave place?

Update on Colin, the rough weekend. Consultant tells us he will start to recover, likely Monday, roll on. He doesn't look great and I'm just waiting for that hair to start coming out. He has eaten a very small amount but I reckon he's a bit like his elderly dad…..makes it up a bit about what he has eaten! Still just sitting in out and roll on when colin can come home. At least I can rush about like a mad thing rather than trekking up and down to hospital. (50 mins each way and a b when the weather is bad!). still who cares as long as he is ok.

Take care all 🙂

Vicki and Colin (who is asleep again, good for recovery) 🙂

[foxy555Participant]

Hi Vicki

Lovely to hear you sounding a bit brighter.

Take care and love to you both!!

Ann and Pete

xx

[Author]

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