This topic contains 9 replies, has 6 voices, and was last updated by 
mhnevill 11 years, 2 months ago.
I've known about this site for a few months but only just plucked up the courage to register and post. Please bear with me as I've not contributed to a forum such as this before and not sure of the protocol.
I was diagnosed with MM in December 2012 just before Christmas, after months of back pain, chest pain, leg pain, in fact at some times it felt that everything hurt! My GP wasn't much help and I was sent for all kinds of tests before a learned hospital professor suggested I had MM and needed immediate treatment to prevent spinal collapse. Although this was probably the scariest day of my recent life, at least someone thought they knew what was wrong! I was admitted immediately and within the next few hours I had been taken to another hospital for emergency radiotherapy treatment to stabilise two of my vertebrae. I was then returned to my local hospital and stabilised with steroids etc whilst they decided what to do next. The good news was that, for the first time in almost two years, I was virtually pain free!
Following day the consultant took a bone marrow sample and within 24 hours informed me that I had MM and that I would be starting CTD chemotherapy over the Christmas holidays. Luckily no-one told me I couldn't have a drink with this therapy so I could at least have a few drinks to celebrate. My 6 cycles of CTD finished in May 2013, after which time my bone marrow was tested again and I was duly told via letter, I'm in "complete morphological remission".
An autologous SCT had been discussed from the outset and I agreed to the procedure. After the conditioning therapy I went into Kings College Hospital for a couple of days for a relatively painless harvest and in the weeks that followed I had many tests on different organs to make sure I was up to it. The most scary was a 2 day visit to Royal Free Hospital for tests at their amyloidosis centre but luckily my body was amyloid free, meaning all systems go for the SCT.
28th August I arrived at Kings College and was admitted to a small room with a single bed, chair, shower room and not much else. This is to be my home for the next few weeks. The following morning off to the X-Ray department for the dreaded Hickman Line but I have to say that this procedure was painless and lasted only 15 minutes or so. The worst part of this procedure was getting over the claustrophobic condition I had to endure with a blanket over my face to create the sterile condition for the line insertion. Later that afternoon I had the massive Chemo infusion plus all of the support fluids they give you to protect your organs.
30th August was the day of my transplant, when my own healthy stem cells were reinfused into my blood and, hopefully, eventually back into my bone marrow. The actual process was an anticlimax but I shall remember it as being the first day of my long-term recovery. Subsequent days are a bit of a blur but this is not the sort of treatment one takes by choice and I prefer not to reflect too much on the nausea and throat problems I have had. The doctors and nurses tell you that nausea is effectively controlled with medication but from my experience nothing can prepare you for the way you feel and certainly no drug came even close to relieving it. However everyone is different!
Today is day +10 and I'm still as sick as two sick dogs but remaining positive just waiting for that magic neutraphil number to rise above the 0.01 level it's been hovering around for the past few days! >:-(
I have come through all treatment this year pretty well I think and it's only now that I feel that I'm not fully in control. It's been a positive attitude that has gotten me through this year, together with incredible support from my amazing family and even more amazing wife.
Hi Barry
Welcome to the site,like you I have never posted on a site before,but I have made up for it over the last 2 1/2 years,my husband was diagnosed in February 2011 ,and I remember feeling a bit of relieve,at least we new what it was after constantly going to the doctors since the previous August !! >:-(
He also had his SCT in Kings,I was impressed with the hospital,but good job Slim was not up to eating food was not impressed,but they there best with what he could drink and eat.:-P
The only thing Slim and I found hard was the 100 days after we're you are still under Kings but 86 miles away,we had a few visits to local A&E plus regular bloods at clinic,so we did feel a little out of things after so much care at Kings,but I am told this is a normal feeling.
Well you have done it,soon as you get the all clear,make sure you enjoy your life,Andy will tell you every day is a gift,so Enjoy.Eve
Hi Eve and thanks for the message.
Kings has been great from the outset and the only criticism I have is that I'm finding the food very unpalatable at the moment due to the nausea I'm experienced. I fact I've not managed to eat any meals for about 4-5 days, although I am maintaining a reasonable fluid intake. It's not that I cannot eat, it's just that I long for something freshly made with fresh ingredients. Even a lowly cheese and salad sandwich sounds wonderful to me at the moment. The good news is that my wife will hopefully bring in that very sandwich for me tomorrow morning! 😀
I am worried about aftercare when I'm let home as we live in Kent, which is not far as the crow flies but at least an hour and a half car journey. Hopefully much of my aftercare can be done at my local McMillan unit and I'll only have to travel to Kings for the milestone tests, etc.
Warm regards, Barry
Hi Barry
We live in Kent and attend Canterbury Hospital.,
We ended up going for bloods twice a week,as Slims Platelets never took off but that's another story,his line was kept in for a long time,and had to be flushed once a week.!! In Canterbury,.
I do not know what ward you are in,but one of the wards,has a bigger kitchen and they will do things like cheese on toast,plus if you ask to see the dietician ,she can help,Slim was so bad with the food,but must admit,the kitchen assistant ,kept him supplied with ice cream and milk,you could ask the dietician,for some shots there just a mouthful,but contain 150 cal. He would often ask for something,then when he got it,did not want it,the coffee in the small cafe kept him going.
Hope this helps Eve
Hi Barry,
You waited for a long time before writing to us, and I bet that at the moment you don't feel like it at all. I'm rather surprised that you've been able to write such a long and coherent email at this stage of the transplant…..
When I was at that stage I seemed to lose my ability to decode print properly – almost like losing a part of my mind. It came back after a few days at home and then I was able to read something and know what it was about.
You're right – there's something about the transplant that can make you feel you're best off asleep because all the meds to make you cope better don't add up to 'normal.'
I felt nausea as well and gave up on solid food for a while. When I came home by taste buds were debased and I wanted to eat rubbish. My husband was queuing up with teenagers during their lunch breaks to get me a sausage roll with ketchup. I did recover eventually and tonight( it's almost five years since my transplant- haven't been in remission all the time- got two and a half years – but have had different treatments as well in the meantime), well tonight, to get back to my sentence, I made seafood paella and went for a walk.
I'm so glad you have a very supportive family – it does make a big difference.
Good luck,
Eva
Barry, I had my SCT about a month before you at the beginning of July at UCLH.
The immediate period of recovery can be pretty unpleasant but now nearly 10 weeks on I feel pretty good. I'm eating normally and doing around 45 minutes of exercise everyday. I plan to return to work at the end of the month (initially only a day a week).
Take it a day at a time, and the fact that you're dreaming of cheese salad sandwich is a good sign! Why is hospital food so revolting?
You're bloods will rise and you'll be home soon enough.
Best of luck with it.
Tom
Thanks for taking the time to respond Eve, Eva and Tom. Had another small infection yesterday apparently when my temperature spiked to 38.2, but the nurses jumped on this immediately and soon had things under control with antibiotics etc. I actually felt fine but I defer to them completely as I'm in their hands and I trust them. Feeling a little improved today and managed to eat some cornflakes and a yoghurt for breakfast, and when my wife arrived she had brought me a tub of nice fruity ice cream and some melon and mango slices. Delicious! 🙂 Tomorrow she's bringing me a fresh sandwich with mature cheddar, lettuce, skinned cucumber and soused onions – and yes I do have unusual tastes in food!
I'm hoping that, after 4 days of neutrophils at 0.03/0.01/0.02/0.02 it will start to increase soon but we'll have to see. I harbour a worry that my neutrophil level will not increase as expected but this is probably just me being worried over nothing and it will rise when it's good and ready!
Warm regards, Barry
Day 12 today and neutraphil level has finally made an upwards bid for freedom and is now at 0.10. 😀 Now waiting with bated breath to see what it will be tomorrow!
Had the home-made sandwich today and it was gorgeous! It did hurt like mad when I swallowed it but well worth the pain. Happily the nausea problems seem to be behind me and I'm hoping that the throat soreness will subside as my blood levels improve.
Hi Topcat this is Perkymite.
Welcome to the site.
I have and still do post on many forums and I have been on this one since Jul 2009. So I can reliably inform you that there is no rigid protocol to follow, it is very relaxed here.
You seem to be doing really well. So keep it up.
Kindest regards – vasbyte
David
Hi Barry
I haven't had an SCT so don't have anything to add on that score, but just wanted to welcome you to this wonderfully helpful and supportive Site that all of us wish we didn't have to join!
All best wishes for your continuing progress and for a very long remission.
Mavis
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