Multiple Myeloma

Hi.   I am now nearly 2 years post stem cell transplant.     The chemotherapy and recovery is tough on your body and you will get some infection as your immune system is gone.     I was in high care single room for 10 days.   My wife visited every day bringing some nice foods drinks ice cream that I could east as my appetite was none existent.  Protein shakes helped. The care I received was incredible!   All the staff at Worcester royal hospital was incredible.      I recovered slowly at home   You will need a carer   I could not put my socks on myself.   I slept every day in the afternoon for a few hours.   Kept visitors away for a few months     But ……..   you do get stronger.  You do get independent again I drive garden. D. I. Y  walk the dog.       I slowly got all my immunisation back from. G. P.  Surgery.   Then had 2 more courses of treatment.    At home and follow up blood tests.   I am still I. Remmision.      Neuropathy is my biggest issue         It’s worth it !!!    Kevin. A. K.  A. Vespa 

Hi Tess, I’m 13 weeks post transplant today. I think they are really trying to limit how long you stay in hospital. It’s better to recover at home so you can avoid hospital acquired infections etc. It depends where you have treatment but I spent the first week, before my counts dropped, in cottages attached to the hospital I then had ten days in the hospital. I was told that some cancer units are allowing patients to stay in a hotel for the first part of their treatment.

In hospital I was expecting to be barrier nursed but people are in and out of your room all the time (I enjoyed the chats) I face timed people family but this was more down to the fact that the treatment hospital is a long way from home. I was told to keep walking, leave my room and do ten laps of the corridor but, tbh, I never left the room, I was too weak and I worried I would catch something from the general population, I kept mobile in the room. I couldn’t do much for a few weeks when discharged, spent a lot of time looking at tv, which is not generally my thing. husband cooked what I fancied, which was very little, and I just concentrated on rest and recovery.

I have a great source of support which is someone, locally, who has been through this a few years ago. I was able to run questions past her about what is normal and not normal and I seemed to follow her pattern of recovery fairly accurately. As is always said on this site though, it’s very individual, some fly through SCT and some are knocked out for months. I had it on the 28/10 and by Christmas I was absolutely fine, particularly as I was off all drugs for a while. My blood counts and energy levels recovered and I was walking the dogs and fully independent, though trying to avoid crowds as fearful of catching flu. I’m a few weeks into the last two cycles now, fully functional still but the side effects are back. Looking forward to going on maintenance. 

My husband was really worried about me coming home, if he could’ve left me in hospital for six months he would have. He was terrified something would happen to me on his watch, particularly as where we live is fairly isolated.  Getting home, as soon as, was a really crucial part of my recovery, having my own food, facilities and being in control of my environment. I think most of the angst around treatment is a fear of the unknown, no matter how much you’re told you still wonder what your story will be. 

Thank you Kevin for your response and honesty. So far the treatment is not having much of an impact on me. The tops of my legs are numb but that could be due to trapped nerves.  My back is still very sore and stiff but I suppose that will take time to heal. My mobility is shocking at the moment. I am a tough old cookie and will come out the other side. There is light at the end of the tunnel. My daughter will be my carer so that is sorted. I just wish I had a time machine to fast forward to being on maintenance.  

My husband will be relieved that he can visit me. He is really struggling to get his head around this. Over the last couple of months I have gone from doing everything including having the grandkids over to becoming this frail old lady who can't even get to the toilet without help. 

Upwards on onwards. We will get through this. 

Hi GW2

Thank you for responding to me. I could not sleep last night so thoughti would reach out to the Myeloma community for help and reassurance. 

I can imagine my husband feeling the same, would be happy if I stayed in hospital. He is struggling with loneliness and feeling guilty because he is not physically able to assist me due to his own back problems and his recent hip replacement. He is not sleeping well because he is always listening out for me. My family are being amazing and taking over as much as possible.  

I am reassured about my next hospital stay. I think you always fear the worst if you are not sure of what's coming.

I do know that whatever is thrown at us we will deal with it together. We have been married over 50 years so we have been through a lot together. This will not beat us. I am a very positive person and a tough old cookie. With this group to come to to let off steam now and then I can see light at the end of the tunnel. 

Thank you again for the support. 

Hi GW2

Started my second cycle of treatment today. My back is feeling tons better. Getting about the house now. Still struggling when out and about. So many appointments coming through. Don't seem to get a day off. 

I have been feeling quite sad today. Didn't help that my last Bone Marrow biopsy failed so they had to repeat it. I hate having that done. I cannot seem to let it out though. Cannot have a good cry. Cannot tell family or friends how very very scared I am. I expect they are feeling the same. I know I am not indispensable but they have all relied on me for support for years. 

I need to put my life in some sort of order but don't even know where to start.

My husband is 70 and not in good health.  He is now having to do everything in the house. He has help from our daughter but I am worried that he will push himself too far and end up really poorly.

Who will continue to manage my mums finances. Who will pay for her care home fees.  She is 92 with Dementia. Gladly she is oblivious to all that is going on. It's things like this that are keeping me awake at night. 

Sorry. I am rambling now. I just want this to be all over and be me again. Wish I could fast forward two years. Needed to get this off my chest. Might be able to settle now and get some sleep.

• Thank goodness for this safe space to air my true feelings. 

Morning Tess123,

Hopefully you’ll have had some sleep and will be feeling a little less stressed. The steroid part of your treatment causes anxiety and interferes with sleep so, combined with the angst of cancer, you will have a few nights like this unfortunately. I’ve had just one bone marrow biopsy and found it incredibly painful too, I was relieved to hear they have stopped doing it routinely after the SCT. 

I’ve spent so many hours fretting, crying, wishing I could just run away from this all and reinvent myself as a healthy person. I recognised I was experiencing the stages of grief (Kubler-Ross) and knew I would eventually get to some form of acceptance. The early part of this journey was hard, I felt really angry and upset, couldn’t believe I was in an oncology unit again for a third cancer. I’ve actually found it a relief to start active treatment after two years of wait and see with worryingly high blood counts. 

I found the hospital visits and monthly blood tests distressing. Every visit staff mentioned counselling, I felt they had me down as a bit of a fruit loop behind the scenes. I’ve tried counselling previously and found it a waste of time so declined it until they told me this unit offers CBT. Cognitive Behaviour Therapy is a lot different to regular counselling and, whilst I only had one long session (my choice, I can go back when I want) it really helped, put things into perspective and gave me some coping mechanisms.

There are lots of support services attached to cancer units throughout the UK so I’m pretty sure there’s something near you. It could help to talk to someone, face to face, outside the family, in a structured therapeutic way. Maybe you may be able to discuss your fears with those closer to you.

Your oncology unit probably has other services, such as financial advice, thinking about your mum, or home care to help you with your recovery. There’s a lot out there, I was surprised just how much. I’ve even been offered sessions for massages, reflexology etc. It’s difficult when you are pivotal to the family but there’s no harm in delegating for a while until you get back on track again. 

It’s probably best to have these discussions before your SCT as you need to have a bit of support for recovery, most people do. You will have to put yourself first, rest, drink and try to eat what you can, I found the medical packet soups they gave me in the hospital a life saver so got them online when I was discharged. It feels like the eye of the storm for a few weeks but, as your blood counts improve, nausea subsides and strength returns you start to return to normal fairly quickly. Normal feels like such a wonderful place after SCT. As said, everyone has a different experience.

Finally, try not to wish time away, it’s tempting, I’ve done it myself, but  focus on the positive things each day brings rather than the issues that bring you down. I find once my mind wanders to the dark place it’s really difficult to get back out of. You’re stronger than you think, reflect on all the difficult situations you’ve already lived through and tell yourself you’ll survive this too. 

Thank you for your kind words and advice. I did have a good sleep once I settled. I am crying again now after your message. I read someone else's journey and thought how lucky I am to only have one form of cancer. Some people go through hell and still stay positive. 

I feel like a wuss and have to put my big girl pants on and get on with the fight instead of feeling sorry for myself. 

I am going to take each day as it comes and today is going to be a good  day. Thank you for your support. X

Hi, I really do feel for you.  This journey can be a very lonely scary place but please know that so many of us on this forum have been and are going thru the same as you. It is very daunting when they explain it to you but just take each day as it comes.  Let your family know how youre feeling,  dont bottle it up.  Im sure they will be very supportive and if your care team are anything like the rest of ours, they are truly amazing!  Please reach out to us, we are all here for you, don't feel alone. Sometimes its good to just get things off your chest.  Im just over 2 years in remission and my life is just a new normal, yes you have to adjust but  I can still go for walks, tend my garden and look after my grandchildren.   Ive got 3 holidays booked in the UK so keep positive,  life is for living, im praying for you but know you will get thru this.  Xx

I am a wuss and still feel sorry for myself but when I go to the unit and hear other people’s stories I feel lucky. I’ve had three cancers but I’m very healthy, I had no symptoms of myeloma, I was doing regular exercise classes before having the abnormal blood tests raised during a routine thyroid test. I’m also fortunate that, compared to some, I’ve recovered fairly quickly. You’ll get there, be kinder to yourself in the meantime, it’s just another journey. 

Yes I was the same, had been a blood donor for over 30 years and went along to donate and was told i couldn't as my iron levels were too low.  Went to my GP for a blood test and the rest is history.  I was a very healthy 68 year old female, walked everywhere, ate healthy and no symptoms at all!  It still astounds me that you can have this Myeloma  and not know!!