[christaylorParticipant]

Hello, I had my SCT in March this year, and yes had a tough time. I think most of us don’t like to be too graffic for fear of putting off, and also adding to their anxiety. From what you describe is about right although you will find everyone reacts different. I had a pretty torrid time for about 10 days, with infections and all sorts the worst headache ever, nose bleeding, unable to eat etc etc. however you do turn the corner and slowly things improve.  First your able to eat a little then the throat starts to get better, and yes you just sleep all the time. Even after all this time I can sleep all evening and night, then get up in the morning feeling exhausted.

With your Mum I am sure she will be ok, the Doctors & Nurses have plenty of experience with SCT now so know what and when to do it. Drink plenty, ice lollies, yogurt, and all the anti sickness drugs you can have.

Take Care, CT.

[annlynnParticipant]

hy. nat. im in agreement with. chris it is a tough journey but the way your mum is feeling is pretty much the norm. the next few days hopefully. shell turn a corner and feel a little better each. day .I was discharged on day seventeen after my sct last august im in remmision. and apart from the. tiredness t 🙂 at overtakes sometimes. im. doing. well. best wishes to mam. I wrote a journal each day while in hospital appart from my. worste three days when i diddnt have the strengh to. hold a pen ha ha good luck with everything. it will get better xx. ann

[natdarke1Participant]

Hi Chris and Ann,

thanks so much for your replies, both of which have given me comfort! She’s just been diagnosed today with an infection so on the antibiotics straight away! I know what you mean about telling people every detail and raising anxiety as one size doesn’t fit all and everyone different…. Think I was just at a low eb this morning and desperate for some common ground as you will know having myeloma can be quite lonely especially as none of my friends ad ever heard of it nor understand it. I really appreciate your comforting words and Ann thas a great idea about a journal I should start one on her behalf while she is too weak!x

[annlynnParticipant]

nat.. the one thing about the. journal is when i look back now i know if need be i could do it again luckily ive got stem cells stored for the future if required. probabley because i know the rough days do get better. I remember on night having infection that they coudnt locate i had a chest x ray in my bed two oclock in. morning also a ecg and. numerous drips all through the night but. two days later thecjournal tells me i put a bit make up on. ha ha xx.

[natdarke1Participant]

That’s it! She’s got this raging high temp but seems slightly more lucid than last night! Wish I could sleep next to her as I find night times the hardest, I don’t want to leave her! They do have accommodation for relatives but its normally booked quite quickly by parents of children who are in. We are an hours drive from hospital. I am hoping she doesn’t remember the last couple of days with her being so poorly!! Glad your doing so much now Ann x

[dinoParticipant]

All,

I have now started the path for Stem Cell herapy. Last week I hadd the initial/ chemo followed by injections to grow the white cells before harvest. I am due in tomorrow for the harvesting at Addenbrookes.

The chemo went well with no side effects. They gave me Dextamethasone, the steroid and that gave me wind and reduce my ability to go to the loo – nothing changes there LOL.

Got to yesterday teatime and all going well except headache when the little white cells started trying to burst out – well has what it felt like. My lumber region is throbbing or pulsating and I could not settle. Went to bed and my wife ended up in the spare bed. Today still got back ache and toothace. Paracetamol has done nothing by I have taken Co-codamol an that seems to be helping.

Really strange but in minor pain and uncomfortable and I keep bursting out laughing – really weird.

My Clinical Nurse Bev is an absolute brick and has been emailing me as needed. The nurses are briliant and dont get enough praise.

The discomfort is a minor price to pay for extra remission. I will let you know how thww harvest goes.

[Author]

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