Hi Graeme, sorry no-ones replied as yet I guess its because this topic comes up a lot – I had mine last Xmas in Leeds and there was a thread under Buddies wanted where a few posted there experiences but I have just searched for it to check its there and nothing came up? am sure if you search under SCT you will get different views. I tried to read up on everything and prepare but to be honest no 2 peoples are the same although I think what is common to all is the nausea and S&D. Everyone will say suck ice when you get the high dose for 20 mins etc to protect your mouth but they’d run out of ice when I had it – and I never had any problems with my mouth? The room was absolutely freezing (bearing in mind you are severely run down) which they said was because it sucked out all the germs etc – so a fleecy throw was needed and warmer clothes. I felt too rubbish to watch tv, too rubbish to read books, but I did enjoy CD talking books to listen to whilst I wallowed. Nausea for me was a huge problem but don’t think there are any tips for that. They say the average person is in 18 days so I had a count down calendar and felt great every night I crossed off another day as its important to remember whilst it is horrible it is not for ever so, no matter how I felt, crossing off another day was a huge psychological lift. People said eating can be a problem so I took in little pots of custard, jelly, rice puds but never used them – but I had no mouth/throat problems they might have been handy if I had difficulty swallowing. Until the HDT takes effect you will feel absolutely fine it’s only when it starts working that you go in a decline I think about day 3+- this surprised me I expected to feel awful as soon as I had it. They say walk around as much as you are able and try to be active – it helps with lungs and recovery but every time I moved I felt so nauseous that I just laid in bed the whole time and was only on my feet to go to the bathroom – others tho have used exercise bikes in there and am sure this would help recovery – again it is all so individual. I often didn’t like to talk on the phone and act all jolly so I used to keep in touch with people via text I know a lot have found skyping their family very good/ a boost and this may reduce visits if you don’t feel up to it. Through out you are very closely monitored and once you hit rock bottom and neutroprenic you may be given bags of potassium, platelets etc dependant. This is when you worry about a raised temperature and infections but they are quickly on top of it/ever vigilant. Think about day 10 you start feeling a bit better every day, stronger and you know you’ve turned the corner. Sorry this sounds like a ramble just typing as I think back (not something I like to dwell on even now) As with everything in myelomaland you may sail through it or you may have a rough time no-one really knows the extent of each symptom for each individual. I thought I would sail through it but mentally, the constant nausea, wore me down. I always liken SCT to childbirth – it’s hard at the time but once done it’s soon forgotten. SCT was certainly not the horror story I thought it would be but it was unpleasant to say the least but as everyone says it is totally “doable”. Before SCt you will be harvested this is the easiest thing a few jabs to get the old stem cells boosted – this may give you pulsating pain throughout your body (too many crammed in the old bones) but paracetomol does alleviate it. Harvesting is quite interesting and pain free – your blood comes out goes into a machine to extract the blighters and then it goes back in to your body. I had a femoral line in for harvesting but a lot seem to have a line in both arms. I liked harvesting it gave me a huge psychological boost as it was easy and you are one step closer. Back to SCT – unless you are carrying excess timber that you don’t mind losing I’d enjoy pigging out for a while as most people lose weight – again some more than others but I think 10lb + would be an average? It’s along time in hospital but most of the time you may not feel like doing much – some take in box sets, books, laptop. Think I may have liked to do a jigsaw might have been therapeutic and not very taxing. Hope you get some more responses, it is difficult as everyone seems to have a slightly different story other than the nausea and S&D and to some its debilitating and to others a mere hiccup. I would just say brace yourself, expect the worst and anything better is a bonus. Soon you’ll be on the other side of it and that’s a very nice feeling. Good luck
Rebecca
PS Would I do it again – yes without a second thought!
graemeandrewartha.
