DVT problem

Hi Brummie villan and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about the journey…. and yes this is the place for you.

So you are an Villa supporter?…. although I stay in Inverness I follow the Villa at a distance as my Son in Law is a life long Villan but moved up to the Highlands with the family a few years back.

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 reaching Stage 4 in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well but not the specifics of your condition…… although I have had 2 Allo (donor) Stem Cell Transplants.

I have a number of post SCT ‘left over’ medical issues, it comes with the SCT journey and obviously still living with an incurable cancer…… you can see my story through the link at the bottom of my post.

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 main ‘Myeloma Group’ title and this will bring up all the group 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.

Always around to chat.

Thats extremely kind and thoughtful of you Mike. Yes,the proximity to Villa Park,my family having had various interractions with the club( gramps was a cobbler just round the corner from the ground making bespoke football boots for them and Pongo Wareing- look him up!was a back room and beer visitor as was Peter McParland in the 60's to my aunts home as a homesick Irish lad) I spent a long time wrking with the club as a representative of the City Council to help them engage with local communities so we could never wear blue and white

I did look at your bio. Its never an easy read when looking at peoples experiences but it has made me feel surprisingly more comfortable to see someone who has a life experience of these things.

My dvt is and has been an awful side effect that has crowned a rather difficult year. My question relates to how people with limited mobility - I had a tree trunk for a leg and the thing would not respond to allowing mobile activity - are coping with being in this position. Its not exactly the cancer but a side or by priduct that has been totally unexpected. If nothing else then hopefully others will have a heads up about what can happen during treatment that perhaps you never considered.

I still live not far from the ground in walking distance. And I have a daughter who simply isn't in to footie so my signed shirt will have to be auctioned off! Bless Peter McParland,he used a felt marker on my 1957 shirt and I just sat in the pub topless with  a stupid grin as my brother ushered me to the loo to cadge a tee shirt!

Hi again, I will have to show this info to my SIL as he will be very interested. He is from Sutton Coldfield so when we were down visiting them the girls went shopping and we would go into games up in the Holte End..... I have a 100% win rate for my home games so I should get down more often ;)

There are some long lasting health issues that can continue after SCT and more so when you have MM.

Let's look for group members to pick up on your post, you can also 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

I am aware that we should not include personal information so will do my best to remain within the boundaries. I was part of a team who were allocated to regenerating the area. Having secured an immense amount of funding we brought local services to the table and created a mini town hall! This was replicated across the uk.As for Brum well only a natural disaster could improve Small Heath so off we went to Aston. But guess who knew folk at the club! So my life was spent for nearly 15 years either at the club or next door in Aston Hall. Filthy job but someone had to do it. I ended up working for the Office of the Deputy Prime Minister - Mr Prescott at the time - and my principal role was to engage in the environment and the clubs relationship with it and the community. It was a tough gig at times but the American owner arrived and was very open to helping out. Job?????? What job. I had a ball for 15 years. Became ill in service and had to go. We were sat in a restaurant saying farewell when a three foot tall American came over and started talking to me. Told me he was Nato's ex general in Europe. He was. He was the clubs owners right hand man known as the general. Popped over to say goodbye to me.We had a few nips and fell out the door a few hours ( or days) later.  Oh the tales!! My great grandpa was groundsman. My nan helped weed the turf by hand. What ? Support any other team?? Nah!

Anyway,thank you again. I am having a difficult time and its testing my resilience . I have contracted the super cold now and frankly its not super at all!  I do have a problem with the side effects of MM and the meds so any experience and potential solutions would be helpful. 

Amazing memories indeed.

As for solutions with regards to your side effects we need some of the group members to pick up on your post as my NHL is ever so different.

I wandered. So sorry. I had my steroids and they rather transport the mind and emotions to places that  I  had shelved away. I am sure you will be familiar with people straying off piste during treatments. 

Very true, I have had excessive amounts of steroids over the years along with some significant pain control meds so I have ‘visited’ areas of life I had also shelved and even now, years on, in normal conversations with my family I find out some of the bazaar things I did and said that I have no knowledge of ever happening….. some scary but others rather hilarious.

It’s a funny old journey.