This topic contains 9 replies, has 8 voices, and was last updated by 
HelenR 11 years, 10 months ago.
Hello all, I am new here.
After going to my GP with pain all over my torso for about a year and a half I was finally diagnosed two months ago with myeloma at the age of 35 and ended up staying in hospital for almost six weeks as I was bed bound with pain as well as having some vertebra collapsed in my spine. It was a terrifying experience as I felt neglected in the ward on many occasions as well as having to deal with the shock of what was happening to me. I contacted this charity on the phone when i left hospital after recovering enough to not be bed bound and they put me in contact with someone of about the same age. She was terrific. I spoke to her again recently on the phone and she encouraged me to put a message on the discussion forum.
I am now terribly lonely as It is just my elderly mother taking care of me and she is finding it difficult as well. I am coming to the end of my PAD treatment as my cycles have stalled at M – band levels of 16 and they are talking about sending me to stem cell transplant. From everything I have read about it I am terrified. Sometimes I just feel at my wits end and feel very needy, especially as it is difficult for people to come and visit me. I feel like my life has crashed at such a young age and that i will never be able to do the things I wanted to do. Would be great to hear from some of you especially about the Stem Cell Transplant as that is particularly terrible sounding.
Kindest regards,
Paul
Hi Paul, Sorry to hear your sad story ,I cant help much as I have smoldering MM which has no syptoms and no treatment at the moment, but some one will be along soon to help and give advice . Stay on this site and you will get help. Ted
Dear Paul
Not a club you ever wanted to join but welcome. Do look at Vikki, Chris and most recently Megan's posts about stem cell transplant, they give you lots of information about SCT, in diary format. I had mine 16 months ago and am doing well since. It is a scarey thing to go through, but more about enduring the treatment than anything else and trying not to let the people round you get too frightened for you when you feel and look so ill. It is a procedure that makes you have to just sit it out, often on your own while the process happens. They give you the chemo, it destroys the bone marrow, they give you your stem cells back like a blood transfusion and you wait for them to start regrowing again. It takes a few weeks, you are very weak for a while and then hopefully you pick life back up again. There is a really helpful book about auto transplants available.
Keep in touch, ask questions, know what to expect then its not so scarey.
Love Helen
Hi Paul,
This is Eva from Scotland. Being ill can be isolating, that's for sure. You mention it's difficult for people to visit you – do you live in a major city? I've found that some friends feel nervous about contacting me in case I don't wish to be disturbed – or perhaps they're not sure what to say…. On the other hand, when I've reached out to people and made it obvious that I'd enjoy contact, then things have gone better.
I agree that having this illness can be terrifying. However I must reassure you that there can be life after being diagnosed. The transplant is not a walk in the park, but it can also be the beginning of a period of renewal. Normally the transplant is not painful, but it makes you very weak, and some people get nausea and diarrhoea and there can be a risk of infections. The hospital will have meds for nausea and they'll watch you in case you get an infection. I was afraid because I thought that if I got an infection when my immune system was down, I'd have to die – since then I've understood that antibiotics are used on transplant patients when they get a high temperature, and that this is very successful. Few people die from a stem cell transplant. When you get home you will need physical help for the first few weeks and you may be tired and want to snooze in the afternoon even once you're up and about. Your mother will need support as well. If she has anyone who can take over occasionally so she can rest, that would be good.
I used the word 'renewal.' It applies to the physical processes as your body builds a new immune system. But it can also apply in other ways. You have the challenge( and opportunity) of constructing a new 'you.'Think about your strengths, aptitudes, things you like. Are there activities for you if you're bed bound for a time? I was accustomed to a very adrenalised and social existence as a teacher – my areas were English and Maths and my work was central to my identity and lifestyle. I wasn't able to continue such a demanding career, though many do keep working after a transplant. At each stage I had to figure out what I could do, and then I had to try and do it with as much verve and pride and enjoyment as possible. I've got a husband so I had someone I could share things with, but my husband's a writer, and he's used to a lot of time on his own. I had to think about his boundaries as well as my needs.
When I was in bed I read a lot and found ways of sharing that with my husband. A week after coming home after the transplant I started to draw. As I got fitter, I took lots of photographs, even just out the window. I thought of ways of improving those photos and of how I could print them to a high quality. On one occasion I stayed up until dawn doing night photography from the third floor window of our flat in Edinburgh. I had a wonderful time that night because because I lost myself in an activity.
My transplant was four years ago. I recovered most of my physical strength and have even been well enough to travel. When I relapsed after two and a half years, I needed more treatment. Taking steroids did not suit me. My dose was reduced and yet my hands shook and I had trouble walking. Again, I set myself new challenges. I started to experiment with different media and was able to work in pastel. In eighteen months I've completed about thirty paintings and hundreds of photographs and I've been learning how to collage them digitally. I've cooked a lot of new dishes and invited neighbours and friends. As my art has developed I've begun to share it with others. I participated in a charity exhibition and as a result of this, made two really lovely friends. They will visit next week.
I've realised that soon I will have been aware of my myeloma for about ten percent of my life. That's a big proportion. Sure at times I've had a sense of dread and fear, but when I look back, there's been many opportunities. I can't always control my anxiety and most nights I still dream I'm teaching because I miss it. When I wake up I try to figure out what I can do that day and how I can share it with others. I've had many many happy times in the last four years.
By the way Paul, because you're so young, has anyone talked to you about a mini-allo transplant( from someone else who has compatible bone marrow)?
I hope you will write again,
Eva
Hello Paul,
My husband Phil was diagnosed in May 2012 at the age of 43 and went through 6 cycles of PAD and as Helen mentioned above I have just documented his stem cell transplant in the Treatment part of this forum (look for Phil's SCT Journey). Phil found the transplant less difficult than he/we had been anticipating. It was not easy and there were some days where Phil felt miserable and ill but he got through it and is now resting up and recovering at home. Everyone is different but we found if you just took it one day at a time it was doable.
I know what you mean about feeling neglected on the ward, there were a few times where Phil seemed to get forgotten in the shuffle of not enough staff and too many patients but just make sure you keep pressing the call button if you really need something and they will come. For the transplant you might be in a private room for some or all of it and the staff will only pop in when they need to check on you/give you meds as they are trying to limit your contact with infection. This can be very lonely but if you take in some books or a laptop it can help pass the time. Phil found the item he used the most was a radio, it kept him company without requiring his full attention.
Please do post any questions or concerns you have on this forum and some one will be able to help you. Phil and I have found a lot of useful information on here and everyone has been very supportive.
Megan
Hi Paul
A warm welcome to the group, it's not an easy task Paul but you can do it, I did it in 2009 bit rough at times but trust me well worth it.
Good Luck in your road to remission.
Tom Onwards and Upwards
Hi Paul,
Sorry to welcome you to this site, but I can tell you it has been a godsend. My partner Colin was diagnosed in October 2011 and it was a bold out of the blue. Like you Colin, and me as his partner were scared stiff, of the medication, the process, the transplant and the outcome overall. Overtime we sort of got used to our life changing to accommodate hospital visits, drugs and the good and bad days. It's not easy but getting your head around making the most of the good days is an absolute!
With regard to the sct my partner colin was very scared and so was I. We engaged with a clinical psychologist to help Colin, and me! And it did help an awful lot. The transplant is a very individual thing in terms of how much upset tummy, sickness, recovery time etc but the one thing we did find was how skilled and knowledgeable the medical teams were and how closely someone was monitored and just how much they had to combat the viruses or sickness etc. we wouldn't say it was easy but doable. Colin had his I end of October 2012 -early November. He is recovering well 🙂
The myeloma team nurses and staff are also invaluable to ring when either Colin had a query of I was worried, and still do ring, was an amazing support. Us that and us on this forum to help you through!
Good luck 🙂
Vicki and Colin x
I just wanted to say thanks all to everyone who replied to my message. It was very reassuring and it made me feel better. I really feel like I need people there for me and it is nice to know there are people on this website. Although I might be incommunicado during the process of sct.
Just a note to Megan, I am also at Barts Hospital. I was in there for almost 6 weeks with my collapsed vertebra and I couldn't use wifi. I was in ward 4a. Noticed you said that your husband had a laptop while he was there. Was he able to use wifi? I hope I react as well to the sct as your husband did and as some of the other folks who responded did. Am still absolutely terrified and depressed though.
Paul
Hi Paul,
Yes, Phil was in room 3 on ward A – no window but on the quiet side of the ward. 🙂 There is the Internet available on the TVs in the room but Phil never used that. Phil had an iPad that he was able to tether to his smartphone to use the Wifi through the phone. Sometimes the connection wasn't great if too many people were using the Internet but at other times it worked well enough to surf the net quite quickly. I do know that some people get a dongle when they go in to access the Internet that way.
Phil has asked me to tell you as well to request the exercise bike when you go in. There is one on the ward and the physio will be able to arrange it. Phil had the bike for 12 hours but due to a few room shuffles we lost it. Phil has found he has lost a lot of muscle and he thinks if he had kept the bike he might have done a bit more exercise when he was in isolation and couldn't leave the room. The physio also provided him with some elastic bands to do exercises with and Phil found them very useful. One last tip from Phil which you may already know since you have been on 4a is to take your own soft toilet paper as Phil found the hospital supply uncomfortable when things became a bit tender. Also the nurses claimed the hair clippers could not be found so we would advise either cutting your hair before or taking some clippers in with you.
Any other questions just let us know and if we think of anything else we will pop it on here. We are back tomorrow to 4b for Phil's first blood tests since he was released.
Megan
Hi Paul,
I'm a similar age (33) and also had a spell in hospital (4 weeks) then PAD. I didn't go on to do SCT so I'll leave others who can tell you more about that! But probably where I'd be more useful is being in a similar boat life-wise: it sounds like you're also single, and obviously sometimes that's a different when you're reading a lot of posts on here from people with partners, kids etc.
Just a couple of thoughts on feeling a bit isolated… Firstly, do tell your friends what you need, what helps, how to contact you etc. Don't feel apologetic or worry about being demanding. People usually do want to help but sometimes don't know how. If it's difficult to visit where you are, then what about getting onto skype quite regularly? It's amazing how that can feel like being in the same place. Or Facebook… I normally wouldn't have posted stuff about myself so publicly but I found it a very useful way to let people know what was going on, usually in a slightly jokey upbeat way, and everyone sends you lots of good wishes back! It just helps somehow. Like a blog | guess does for some people, but with this it's just for people you know. Secondly, make sure you get a counsellor – through the hospital/NHS or perhaps you'll find a local cancer charity can sort that out – I had 6 weeks at the hospital and then since at a local cancer centre, all free. It might be useful for your mother also… it will be very hard for her to be seeing you so ill. It's totally normal to feel low, or up and down and worried about the future, but it can be difficult to talk about it. There are also lots of books written about cancer – obviously everyone's experience is different, but I've found a lot of them helpful. Whatever you're going through, someone else will have been through it and worse, and have helpful ideas or just make you feel less alone. Again, at the cancer centre I've been to there's a library so I tend to pick up things which look interesting. Thirdly, do still have fun!! Take a break from thinking about myeloma all the time… Watch lots of box set DVDs, read books, eat nice things, treat yourself somehow, go for a nice walk in the park if you're able to be a bit more mobile now. I know it's hard while you're on treatment but there will always be something you can do to feel a bit better.
Best wishes! I'm not on here too much nowadays but if you have any particular questions send me a message!
Helen
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