[simon73Participant]

I was diagnosed with MM in late November after finding out I had 3 fractures in my Spine (L2-L4). My Hemoglobin level was down to 5.3. Thankfully its now 12.5. I straight away received small level Chemo. I have 5 cycles of 1 Bag and then 3 Injections. I have these at my local Hospital. I also have to go to Hannover once a month. This is where I was first and who is the Centre for Cancer Treatment in my area. I am due to have Stem Cell Treatment in April with big Chemo. I currently dont feel ill at all. I have big pain in the left side of my body due to a nerve problem. I sleep 6 hours as i have always done despite taking 35 Mg of Morphium a day. I feel strong and have gained 5 KG from December and am now 82 Kg. I was 96 Kg before the illness. But despite all this good results I am scared. I am scared of the Stem Cell treatment and am scared of dieing. I try to keep positive and watch, read and do things that make me positive. I have no friends locally as we moved to the town in August. I have many friends across Germany and the world. I use Facebook as a way of getting things out and receive much strength from the likes and comments from friends. Its good we did as my wifes parents live here and they daily look after our 15 month old daughter with me. I am scared I will drop her or something. My health Insurance pays for my taxi to Hospital including Hannover as well as many other things including somebody to do house cleaning etc. I am just so scared of everything with the cancer. So many emotions go through the day. It all feels like a dream.

[greg777Participant]

Hi Simon,

I recognise a lot of the emotions in your post. I think it is entirely natural for you to feel scared – i think everyone does. I don’t know your specific situation but myeloma is a very treatable disease and there are people on this site who have lived with myeloma for many many years. The stem cell transplant process can be tough but I have had two and recovered well from both of them, and the process is getting safer all the time. So I can’t tell you not to be scared – after all, cancer is scary. But you can live very well and for a very long time with it, and forums like this are great for sharing experiences and connecting with people going through a similar thing.

Wishing you all the very best,

Greg

[simon73Participant]

Thanks Greg for the positive message. This helps me alot to try and stay positive. I also wish you also the best in your fight of MM.

Thanks

Simon

[louishenryParticipant]

Hi Simon, if you find Facebook useful you might consider joining the UK Myeloma Support Group. It is good for shared experience and mutual support, thought this site is much better for information. My worry was that I would not be offered a SCT as my kidney function is not brilliant. It is not nice, but the unpleasant part only lasts a week or so and it offers the best chance of a long remission. I’m glad I had mine and will have another when it becomes necessary. Good luck with your treatment and transplant if you decide to go ahead with it

 

[tonyfParticipant]

Hi Simon, I guess that I am a lot older than you. I was scared s******s when I was told that I had myeloma, I had never heard of it before and immediately went home and googled it, that made it even worse, I thought that I would not last the year. But I did, I had stem cell transplant number 1, had 26 months with no drugs and no treatment except for 3 monthly Zometa infusions, I came out of remission and much to my surprise at 72 years age I had a second stem cell transplant, now a year down the line my paraprotiens are unquantifiable, I am NOT on any drugs and NO treatment, we’ve just come back from Tobago, are away again in a weeks time with the family to Norfolk and are talking about going to visit one of our sons in the Philippines. You’ve every right to be scared but there is life out there, trust in the judgement of your specialists.

The Facebook Support pages are ok, but, I let you draw your own conclusions!

Its all very scary but you can do it. I have and so have others.

Best of luck

Regards

Tony F

 

[simon73Participant]

Louishenry- thanks for the advice and also replying to my post

Tony – thanks both for your message and support. Yes I can relate to alot you say and I take alot of hope and comfort from your message. Thanks mate

I spoke to one of the kind ladies on the phone this morning. Even though I get all my treatment here in Germany she spend 40 minutes kindly offering advice, support and suggestions. It might not be something amazing she said but it just calmed me down after a a bad 24 hours where I lost control of staying positive. I think my battle is more mental than the cancer itself at the moment. Its very much staying focussed on what I have to do. I am fortunate that I am until the Cancer head Coach of the German Rugby League National team and so I can try and use some of the experiences in to my battles. Keeping focussed on the basics and staying positive is what I try to do and that helps. The support from Likes, Comments and videos on Facebook from friends around the world has given me much strength. I feel much better now and back where I should be feeling positive and ready to fight this battle with 100%. Thank you all on here for your comments and the people who have provided support for me and others with this support group.

Simon

[tonyfParticipant]

Hi Simon, thanks for your message, great job you have! If ever you get to Leicester look me up.

After my first stem cell transplant I was at a really low point, the local cancer centre offered individual relaxation classes, the woman also practiced reiki, after those sessions I was so relaxed about things, amazing. We have just returned from Tobago whilst there my wife had ordered a reiki session for me. The session was great, the woman was a reiki master, during the session she used crystal bowls and a flute and I felt so many tensions disappearing from my body, felt really great after and still do. Ive not really believed in alternative therapies but this has made me think that I will find someone here in Leicestershire.

Best of luck

Tony F

 

[simon73Participant]

Thanks Tony. I coach for free as we dont have much money in Rugby League in Germany.

My parents and Siblings live in Halifax though my father was born in Germany in 1944. But if I ever get to Leicester I will let you know. Same if you ever make it to Hamburg or Hannover. I live in between the 2 cities

I am like you am very sceptical about alternative methods. My wife has suggested Reiki and so after what you said I will look further in to it. Have to look at all options dont we!

Thanks again mate as I was in a bad place with my first post but you and others have helped me get back in the horse and now am positive and now focussed on what lies ahead in my battle. Finally speaking to somebody with Myeloma is great! Thanks

[rob47Participant]

Hi Simon,

I was diagnosed just before xmas. Understand what you have been going through,  I spent nights awake in hospital asking why me? and worrying about the future. Whilst I do have off days, things have got better I am home and off crutches and getting more mobile day by day despite having to wear a spinal brace, and just finishing my second cycle of VTD.

I also found the Myeloma UK helpline really helpful. Try and stay positive, I know sometimes it is difficult after the cancer diagnosis, but think of the positives your wife and your young daughter (I have my hands full with three kids).

Being a Northerner I played a little bit of Rugby League (not very well) many years ago and I know it is a sport of honest and tough characters who battle and never give up.  I also coached a youth football team as  a volunteer right up to the incident where I fractured my lumbar. I knew things were not quite right for a month or two, but I was told initially the back pain could be a slipped disc or a strain, but this just got worse. I guess we have to practice what we preach about being positive, staying focussed and battling in the face of adversity.

Wishing you all the best.

Rob

 

[simon73Participant]

Hi Rob

Thanks for the message and support. I wish you and everybody the best in there battles with this stupid disease.

Simon

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