I got diagnosed with burketts lymphoma in 2016 after falling down 12 stairs a thratchering my back,I got told they had good news and bad news for me ,they said the good news is that i have only thratchered my back,the bad news is that the ct scan showed up lots of lesions all over my body,after spending a couple of weeks waiting for a scope ,they eventually told me that I had colon cancer,they then transferred me to another hospital,after numerous scans and a bone marrow biopsy,I got told it was burketts lymphoma high grade,stage 4,got told if I didnt have treatment that I would be dead within a few months,this was a real shock as I have a large family with 4 children,my consultant told me there was a fighting chance if I had high grade chemotherapy which would mean a long stay in hospital in the end it ended up being just short of 9 mths,at the end of the chemo I got told on the Saturday morning that I was in remission we were all amazed with that,the following morning I got told that they had made a mistake and that I wasnt in remission after all we couldn't believe it,had to wait 2 weeks to have another bone marrow biopsy to double check,6 weeks later they said they had made a mistake and that I was in remission after all,again we were well happy but left us not feeling very unsure of our consultant,3 years later I am still in remission so that's amazing, but why do I feel so empty inside,due to the pain of my back I have been left addicted to oxycodone and gabapentin,I have tried cutting them out but I am left in a right old mess,the pain killers I am on I shouldn't be in pain but I am every day,been back to the doctors and all he said is up the medication that's allways his answer,I am really depressed all the time I feel suicidal most of the time spend lots of time looking at my meds box thinking everyone would be better off if I wasnt here,my wife said I come out of hospital a completely different man,moody short tempered and allways tired ,my wife also suffers with very bad depression which dosnt help,we are both feel so alone,I feel as if I have taken a life and wasted it because how I feel,I feel the life I was spared could have been used on someone who deserved it,I can not work because of my back pain ,now have the esa wanting to access me to see if i can go back to work,this is putting even more pressure on me,dont get me wrong i do want to goto work but the pain i am in all the the time i dont think i will be able to also being on oxycodone and gabapentin make me so tired,its been nice reading other peoples post make me feel a bit better knowing that it's not just us that feel like this,I havnt received any counciling due to being told that it would take so long to see anyone
Hi and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear that you are struggling in the post treatment world.
I can relate to where you have been as I was diagnosed with another rare type of NHL - Cutaneous T Cell Lymphoma (Skin Lymphoma) (CTCL). This was back in 1999 and it has been a long and at times traumatic journey - if you hit my forum name Thehighlander you can see my journey.
Blood cancers are very difficult to diagnose correctly and my diagnosis changed a number of time until we go it spot on..... its not great to hear 'we got it wrong' but for blood cancers this can unfortunately be normal.
Along with my cancer diagnoses, you will see that I also have a number of other medical issues resulting in various challenges that makes this 'living' thing hard at times.
Over these long years I have been able to position my thinking that looks for the positives, now I can hear you saying "what positives?" but as with you, back in late 2013 I was given 30 months on the clock when my condition became very aggressive so it was 'embrace the treatment journey and aim for life, what ever this would look like' or a 'wooden box'.
I went for life, yes some ongoing challenges to deal with but my main focus is never on me me, but always on those around me, the ones I love and want to see grow up and be proud when they go to school and do the stuff that makes me proud...... during the last 6 years we have a further 2 granddaughters come into our lives and this just over rights the ongoing health issues I have and I intend to enjoying what time I have left.
Have you been referred to a pain clinic - to see pain management specialists......this can make a difference.
Keep posting as it does help to talk with folks who understand.
