Hello new to group

Hi Cakie and a warm welcome to this corner of the Community (and from Inverness) although I am sorry to see you joining us and hear about the journey you are on.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well but not the specific treatment you areon.

Let's look for some of the group members to pick up on your post. There actually have been a few new members join recently so why not click on the Myeloma Group title and this will bring up all the posts. Have a look at them and as always you can hit reply to any post and see if the member is still using the community.

It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too.

This service provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow a few working days for a reply.

For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332

Always around to help more or just to chat.

Greetings and a 'strange' welcome to the club I guess. 

I was diagnosed in August 2019 and did the VTD regime prior to my SCT. I think the one thing, which you have already picked up on, is to really listen to your body. I suffered quite a bit with the VTD cycles but found, after a while, I could predict which days were worse. For me, I struggled with fatigue more than anything and for maybe 3 days each week I wasn't up to doing pretty much anything but sleep ;/ doze. I alsi had very weak muscles and have lost a lot of muscle mass over the years, I was 51 at the time and I struggled to get myself up a step at times. My balance was also pretty rubbish so I was always tripping with the odd fall. Our cat and dog didn't help with that one but it did amuse our teenage daughter. 

The thing is, when your body tells you to rest, then simply do that otherwise you'll push your body too far and crash at the end of the day. You'll learn that many things can wait and you'll also work out easier ways of doing many things. Use your good days for the jobs and rest on the bad ones. Now, you may be lucky, like many are, and manage it very well where you can also continue work. We all react very differently, so when you read the info from Myeloma UK, which is fantastic, just remember that these are the side effects that 'may' effect you. Not everyone gets all of them, there is no real rhyme or reason to why we react differently.

Whilst myeloma is incurable (for the moment) the current treatments are really very good. Obviously this isn't the case for everyone but it shows how well many of us react to treatment. I had my stem cell treatment in Feb 2020 and to date I am still clear as I had my regular phone call with the hospital only a few hours ago. I suffer with some of the side effects of both myeloma and the treatments but again, many get away with very little to no effects. 

I'm not on this site often, I should be I know, but if you need to ask anything then please do. Macmillan is a great support network and if ever needed, they should be able to provide you with counselling and also any help with government benefits such as PIP etc. as they all help when you are going through all of this.

Hope this help in some small way and you will be able to cope with this, it may take some adjustments with your life if things get hard, but you will get there. I may tell you of my woes at some stage, they are not horrendous, but my life has indeed changed massively especially as my wife was diagnosed with breast cancer only 9 months earlier. I know, wer're greedy having two in the family but it makes for a laugh as we race to see who has the most scans etc.

Best wishes

John - Any missed typos are my dodgy eyes and has nothing to do with the glass of wine next to me!