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 Bignuts69 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.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
My welcome to the online community also it really has been a rollercoaster of ride you've been on for the last few years.
Unfortunately getting counselling can take time but if you are not on the radar for it I would suggest getting the ball moving as soon as possible.
If your follow this link it will take you to the NHS Talking therapies or counselling information page with this service you can either self refer yourself or your GP can do it for you but I would suggest that you check using the search tool in the link to find out the nearest one to you and get yourself registered.
There is also link to other organisations that might be able to help please check them out.
At the same time but not as an alternative follow this link to the Maggies Centres and do a search to see if you have a centre near to you as they maybe able to arrange for counselling sessions for you or at least give you some advice.
I'm sure if you look at all the organisations there will be some available and being registered with all of them will get you on the road to the counselling that you desperately need.
As the Thehighlander mentions a referral by your GP to a pain management clinic and to be enrolled into a pain management programme
The following might be of interest
How to get NHS help for your pain
Pain management in your area
It is disturbing to read how you eye all your bottles of painkillers and the thoughts you are having, it's not the answer this is something you should have a meaningful talk with your GP about and again can I suggest that you pick up the phone this morning and make an urgent appointment to see your doctor. At the appointment pour your heart out leave nothing out tell him everything you've told us and if necessary go for the sympathy vote and let your emotions pour out and if that means having a few tears in your eyes so much the better.
We have a telephone line that you can contact for advice the team who answer the phones are very friendly and compassionate and will let you tell them your story before they start to give you advice. The number to contact is 0808 808 0000 and the team are available to answer your call every day of the week between 8 am and 8 pm but the time to call them is today.
Unless you get some help you maybe forced back to work, still taking your cocktail of painkillers and ending up even more stressed out and depressed.
Please have a look at all the links above, make the phone calls and get that appointment with your GP and get all the help that you need.
At anytime you need to chat please use this site to come on in and express your feelings, getting everything off your chest can only be a good thing and one of the things we excel at is that we are never judgemental but listen and offer advice where we can.
Please do keep in touch with us.
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I am sorry to hear you having such a difficult time. Everything you are feeling is completely normal. It is awful being In constant pain as a result of treatment to get well and this can take a toll on our emotional and physical health alongside the difficulty of adjusting to a life and a future that was not what we had planned for ourselves or that we want. When you add to that the extra stress of applying for or being reasssesd for benefits. I used Macmillan welfare rights who helped me fill out the forms and advise me.
I can recommend Maggie's as a source of support also as I finally reached out to them after 4yrs of struggling. There is always someone there to talk to and I have been lucky enough to get one to one psychologist support after only a 3 week wait which is helping me. They also have lots of group sessions and benefits advisors. There is quite a wait for counselling support through the NHS but it may be worth the wait although I appreciate the wait is frustrating.
I have some very dark days and some better days and knowing that there are always some better days ahead is what gets me through the dark days as well as the support available through this forum.
I hope this message is of some help to you and that tomorrow is a better day.
@Bignuts69, just wanted to say your story moved me to tears. I’m so sorry for the way you feel. I know pain can make you feel depressed.
If you have a Macmillan centre near you and you haven’t already please go and see them, they are brilliant, they can give you so much advice and support.
wishing you well.
It's just so said that you go through the struggle to beat cancer,but what your left with afterwards makes you feel so alone
I have been to the pain clinic already they did a epidural which helped for a couple of weeks,they changed me from zomorph to targanet due to me suffering with terrible opiot constipation,they said they could help me any further,my doc is bloody useless his answer to everything is up the opioids, all I want is the pain to stop,I cant do anything alone because my memory is useless,eg I supposed to cook dinner after a hour go to get it out of the oven,to find I havnt even turned it on,if i goto the shop i find myself walking round for ages because I cant remember what I am supposed to get so someone has to come with me,I cant drive at night because I loose all bearings where I am ,it makes me feel like I am five years old I hate it,I used to be a normal bloke now i am left like this ,thats why I feel like it was a waste of time fighting the cancer
Thank you for your kind words I am going to try and get some help I havnt had any counciling at all since getting cancer think it's long over dur
I understand that feeling of being alone in all of this as this is how I felt. One of the good things about this forum is that you realise that there are people out there feeling the same way who can offer some support. I am glad that you are going to look into some counselling as this may help, although it will be an emotional process.
I know you mentioned an ESA assessment as you are still unable to work. I wondered if you had applied for PIP as the current memory problems you have and help you need going out and about could qualify you for this.
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