Val
take the precautions recommended but to be honest get him back to normal as soon as you can. The odd germ won’t do any harm and will help the immune system do what it’s designed to do. Also get him out for fresh air and exercise. Good for the body but also the mind. Hospital for SCT was mind numbing and I was glad to get out and do normal things. I took my daughter to NY during October half term (bucket list made whilst having my SCT) and I left all my meds at home by accident. I caught a bug …..and have never recovered quicker! So get him out and back to normal things and enjoy life.
Happy Christmas as well. 😀
Great news Karen. I was lucky enough to go back to work about 6 weeks post SCT and I haven’t looked back. You should find yourself getting stronger each day and enjoy this time. As one of my consultants said to me ‘it doesn’t get better than this’ so enjoy it. It’s a pain having to do Zometa every month and each quarter my anxiety levels go up when I get my bloods checked but it makes me savour the days I have now. We all don’t know what’s around the corner!
Healthy living all
No harm in using a buggy David. The fact that you are out playing is great. Beats sitting in a hospital bed doesn’t it? It took me. A few months to build up to 18!hiles so take your time. Use the buggy, then after a while maybe try 6 holes walking, then 9 etc. That’s what I did. It was an objective of mine to get back out and now I’ve done it I feel great about it.
Keep on going, you’re doing great.
Dave. I have quite bad neuropathy in my feet caused mainly I’m told by the thalidomide. The muscle loss in my legs was due to the dex steroids. I tried pregabalin but had a major itching reaction to it so had to give that up. I have been using amitriptyline for about 2 months now. I finished chemo at the end of last year so I am further along than you. My legs have grown stronger with exercise (& no steroids) and I can now manage 18holes of golf I think due to the <span style=”line-height: 1.5;”>amitriptyline. I can’t be sure as my consultant said to me today that the only true way of knowing is to stop taking it and see what happens which I don’t fancy doing. I was on 10mg and then doubled to 20mg. Drowsiness is a side effect but I am no worse with 20 than I was with 10 but I actually find it helps my sleep if I take it a couple of hours before bed. It might be that the steroids are not fully out of your system yet so it may be countering the drowsiness from </span><span style=”line-height: 1.5;”>amitriptyline? </span>
What I have learnt is that you need to give these drugs time give it a couple of months or so and see what happens then. After chemo I found it hard to stand up for longer than 5 minutes without pain. Now I am back playing golf for 18 holes and can just about do it it takes time but keep at it.
Bernard
Hi
i had thalidomide and it caused me neuropathy which I still suffer from. However, I recently completed my first 18 holes on the golf course. There are meds for neuropathy so ask your consultant. The pins and needles and numb feet are still there but manageable.
Good luck.
Hi Karen. SCT isn’t easy but hopefully in the end worth it
Good luck Brian. After all the waiting, the end result should be worth it. I was able to work after my Hickman line was in and indeed travelled abroad on business (although I was concerned I might set the metal detector off or something and have to explain what was under my shirt and tie!). I was back at work 6 weeks after transplant and my first day involved flying to a conference and I lived every minute of it (although I had to explain the bald head!)
good on luck and stay positive.
Hi All
for those going through SCT sometimes it’s better not to know! I was out after 19 days which I thought was good but well done to those out earlier. Day zero is transplant day and I was told day 10 I would be unwell. Close, it was day 9 and for the next 3 days I wanted to end it all! I honestly thought was all the effort worthwhile? Then I started to recover. This all happened in Late February this year and now it seems a lifetime ago. I was told it will maximise remission and I hope that’s the case. Now I am enjoying life and apart from my monthly Zometer and quarterly blood checks, I don’t need to go to the hospital which is a god send.
One thing to consider for those that have gone through SCT is that when it’s over you feel slightly lost because you have been so focused on getting through chemo and then the SCT. don’t worry, it happens to most of us. There are some sharings on the under 50’s forum for those that are interested.
Good luck to all – life does return!
Hear hear. Well said.
And for for those that can’t find that energy for life, don’t beat yourselves up as that won’t help. Try and find it bit by bit. I was lucky to be offered free councilling at the hospital I was at (given the fees I’m sure it wasn’t free!) and this helped a bit but I realised after 3 sessions (I was entitled to 8) that I had the answer within me, which was to embrace the life I have, not the life I wanted or had before. It takes time to recognise this and I’m sure we are all different but try and reach out for it as you will really kick yourself when you are back in hospital when this nasty disease is back. Yes we are all told it will return and every quarter my anxiety spikes as I wait for my blood test results but what will be will be. Worrying won’t change the result, so live life as best you can.
Hi all
its hard to stay positive and focused when all we have been doing is this during the treatment. When the treatment stops and we are in remission, where do we go from there? I have wrestled with this and finally concluded this is as good as it gets so I may as well enjoy it whil it lasts and embrace life. I remember the times in hospital, the chemo days, the infection days, the SCT weeks and then I look at the sun shining, being back playing golf, going to ,settings, actually walking up escalators and I think that I’d rather be doing all this than be in hospital. So the answer for me is to go and grab life whilst we all still have it. Take advantage of the remission whilst it’s there. When we all relapse then we can think back in the memories of enjoying life and make new objectives to enjoy it again.
So take advantage of remission, get out and do things you may not have done before. Be bold, be positive. Embrace the life you have, do it now as tomorrow or next week, month, year, you may not feel up to it.
Good luck everyone 😀😀😀
B.
Hi all
my consultant briefly talked about maintenance but we quickly decided against it. I am not on any trial (I wasn’t offered it) but like others here, I wanted to get off the drugs and try and lead a normal life. I had a SCT in February and was back to work by the beginning of April mice had the odd chest infection but otherwise ok. One of the reasons I didn’t want maintenance was that I got bad neuropathy from Thalidomide and the maintenance drug discusses was likely to add to this. The neuropathy keeps me up at night. I did take Pregrabalin for this but I reacted with severe itching so. Mae off that.
It it is always a balance between the benefit of drugs and the impact of side effects on your quality of life. As someone else said on here, quality v quantity of life.
Now, has anyone got any good suggestions for insomnia?
Hi all
I was diagnosed last year in July, had chemo from August onwards and had my transplant in Feb 2015. My focus was always on the next part of the procedure, such as the next chemo session. Once chemo was finished, the focus was on the SCT and then during this, it was all about returning to work, which I did at the beginning of April (quite early I understand.) Now that I am back to work, I feel like the rest of you. I don’t seem to have the excitement or the focus. So what now? The only thing I can think of is to set a new objective so I don’t keep thinking of when MM might come back. I’ve had objectives all the way through but my last objective was getting back to work. I guess as with all objectives, once achieved, you have to set new ones so that is what I am going to do. Problem is, I can’t think what they might be as yet!
Thinking cap on.
HMJ. Wow. How wonderful to read what you have written which brought tears to my eyes. 19 years is the longest I have ever heard anyone surviving with MM. I was diagnosed last year at the age of 47 and I have 2 kids, one 18 and one 15 and one of my objectives is to be able to walk my daughter down the isle at some point if I could get 19 years I might do it but who knows. The disease is horrible and your dad was obviously very strong and brave and credit to him for that. I am currently in remission after a transplant 2 months ago. Let’s hope I have the strength of your father.
Thank you for sharing.
Just an update in the hope this might help others, I stopped the Pregrabalin and the itching has slowly stopped. Not completely but a lot better than it was. So I assume it was the Pregrabalin after all.
Never rains but it pours. DVT in both legs now which is affecting DVT treatment and will impact bone marrow treatment. Hey ho.
