[deanParticipant]

I hope I don’t type on to much with my story.

Im 41 & up to mid April I was working 6 days a week living life with my lovely wife & 2 daughters. Over the last 3 years I was going to my GP  regarding heat pulpertations which I felt were getting worse but was always told it was stress of working. After a another visit to my GP i had a blood test & was told to go to A&E as my kidneys are bad & very enimic hence the heart pulpertations

After staying in hospital for a week I was told my kidneys will recover & I have multiple myloma. This was a big shock but at the time I was not worried as the Doctor said you can still live a reasonable age with all the treatments available.

I started my chemo that day & after getting a bad rash from one if the tablets I ended up in hospital pretty much all of April. I was very positive & getting on with my chemo until I went online to read all the bad info. This last week it has really hit me, getting very tearful & need to shake this off soon. I feel I’ve had a delayed reaction with my feelings etc. Has anyone experienced this?

The Doctors seem to think I’ve had MM for at least 3 years & my new Gp told me that I had a blood test back in 2o14 which should of been picked up but wasn’t.  Would really like to get in contact with others out there so feel free to contact me.

My treatment got to a good start, my parprotiin has come down. Does it help to be in remission before your transplant or does it not really effect the outcome of the transplant? Thanks

[rebeccaRParticipant]

Hi Dean, Sorry you are hear but it is not all doom and gloom tho’ when you are young with children it is hard not to get beyond the doom. I was diagnosed with kidney failure at 50, similar to yourself I suspect I had it a long time but I used to work nights etc so can always explain the tiredness away and my kidneys were at 5% – I had been in kidney failure for 6 months with all failure symptoms but my Dr diagnosed labyrinthitis (ear infection! tut) – this meant my kidneys could not recover fully and am at 32% now. I am 2 1/2 years post transplant and living life totally as normal as before except with the “dark cloud” following me around- for me MM is more mental than physical. I was diagnosed at such a critical stage and I left the hospital just before xmas, without any literature (my choice) and did not dare look on the internet until xmas night and then the realisation started. I don’t mind saying I spent a long time grieving for my lost future – or the future I had planned, torturing myself about my daughter left motherless (on par to self-harming). It took me a long time before I could start looking up information etc – it was all too raw. This is a natural process, you have had one hell of a bombshell obliterating your life as you know it and it takes time to recoup, accept and move on as best you can. You must allow yourself this time and go at your own pace as it won’t effect anything – you’re not going anywhere and the MM is now on the medics radar so concentrate on you and your families needs now..there is no need for panic mode. What I can tell you is that this is not going away any time soon so formulate your battle plans – and by this I mean you and your wifes coping strategies as this is one rollercoaster ride and a real mind ****. Your MM has responded to first treatment which is a positive sign and you have lots of treatment available as and when you need them. The “double edged” positive is you are young – now this does not sound right because Mm is for the seniors not us young folk and I would totally prefer to have developed it at 70 (ave age) when my daughter is settled and I could accept it more but… you have more choices…you will be offered an SCt but will always have the Allo/mini allo transplant as a trump card if you want to treat it aggressively ( My kidneys were too damaged unfortunately). I am 3 1/2 years since diagnosis and still (touchwood) in remission and each year they are learning more and developing more treatments so try and consider this as a chronic condition. When you look on the internet the stats are not very relevant now as they are based on a time scale when the new novel drugs were not available. Drugs are improving, life spans are improving.. there is hope. If you really delve into the web – I would suggest the US myeloma beacon – you will discover people living well with this for many many years – yes there are also those who aren’t but what I would like to stress to you that MM is very individual and hence you are not that statistic, not that average life span, you are unique and whilst they may predict your outcome they don’t know. I have high risk cytogenics (this is not good – predicted aggressive, difficult to treat on average) but I was easy to treat and am 2 1/2 years post SCT ( higher than the ave 18 months) So whatever you read I can tell you of those who buck the trend because it is so individual. My advice to you is recognise your life has changed, decide how you want to forge ahead and arm yourself with coping strategies- note I am not saying literature, research etc because that’s the medics jobs your role now is to cope well with it all as a family and so this is where you energies should lay. Try anything and everything and see what works – mindfulness, to me , is the key along with relaxation techniques or hard exercise – adrenaline buzz (tho sometimes difficult on chemo!) Sorry, I am rattling on whilst drinking champagne, won at my daughters leavers sixth form ball….when diagnosed I worried so much I would not see her through her GCSE’s and when I did I hoped to see her through her A levels and now I believe I will see her through her degree! I know you will be looking at your daughters and torturing yourself with “what ifs” but this is so very very harmful and you must learn to block those thoughts as they are draining away much needed positivity. When you have such thoughts turn them round and think “well if I am going to die how do I want them to remember me?” and focus life on living, laughing, loving “Life is 10% what happens to you and 90% how you react to it”. As soon as we are born we are all going to die it’s just that MM brings it to the forefront of your mind and we are not used to this. Remain positive as you can do this – you will have your course of chemo to get you in remission and this will be strengthened by an SCT – 3 months recovery – and you’ll be back. I won’t say you will be back to normal as this is undoubtedly life changing and during the course of your treatment you will, I hope, decide how you want to live your life and prioritise what is important to you so in the end you live a richer life if not bitter-sweet.

Rebecca

[deanParticipant]

Thanks Rebecca

A great message it’s really helped. I’ve defenitly had a delayed reaction from my diagnosis. From today I’m starting a fresh. Glad every thing has gone so well your end keep it up also.

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