My journey

Hi again Jean Gypsy rover and a warm welcome across to this little corner of the Big Mac Community.

For context for the others looking in to your post I also have a type of NHL, but unlike your B Cell NHL my T Cell NHL is incurable.

Your journey has been so hard on so many levels but it’s good you are home and seeing your boys but not great that you are still in so much pain.

The chemos used to treat blood cancers like NHL are very very strong so unfortunately there are often treatment ‘left overs’…….. and every part of the body aching can be one.

The fact that you were in hospital for 16 weeks!! and you were only discharged in September - you are in the very early stages in your recovery.

Following my second Sten Cell Transplant I left the unit (only in 4 weeks) in a wheelchair as I had lost the use of my legs……. this was due to the effects of the chemo but also and more specifically down to the lack of activity. I was bed bound for most of the 4 weeks so my Mescalero wastage was bad and combine this with pain from doing simple tasks, lack of sleep it was exhausting.

My head Consultant told me that going through Lymphoma treatments was like doing a boxing match and a marathon every day you were on treatments and this was all done without any training……so no wonder we hurt.

I was checked over and nothing was wrong apart from my muscle wastage and damaged nerves where my mass was so was sent to Physiotherapy once a week, given daily exercises to do and told “no pain no gain”…… was in some very strong pain meds but slowly things improved.

These sign are everywhere in our Heamatology unit and it’s so true.

……. so by the time I got out of hospital I had the body of a 90 year old.

Very early on my great Specialist Cancer Nurse pushed me through the hospital corridors to our local Maggie’s Centre and enrolled me in their weekly men’s circuits group. This was taken by a cancer trained instructor who set exercises for each person needs…….. I eventually got out of the wheelchair after 4-5 months and slowly back on my feet….. the pain was still off the scale but I was finding there were slow improvements…… it took a good few years for me to say I was back to fitness and be off my pain meds.

Thats part of my story, let’s see if any of the other wonderful group members can bring some of their experiences to the table ((hugs))

Afternoon Thehighlander. My journey was unbelievable , not real , denial , I had 2 trips in an ambulance to hospital each time told to go home , after Christmas last year another trip in an ambulance told to go home , in May my back pain was getting worse so I called nhs24 & travelled 25 miles got a jag & sent home , 9 hours later back to the same hospital as it was the weekend. Sent to my local hospital & was admitted Tuesday MRI Scan , Wednesday MRI & CT Scan , Thursday CT Scan & a biopsy , they found a mass at the bottom of my back attached to my spine , 10 days later I found out I had non Hodgkin's lymphoma , I couldn't take it in , I was transferred to Queen Elizabeth Hospital Glasgow , where I was for 16 weeks , my journey was like a supernatural experience , wasn't cancer I only had a bad back as physio said I didn't have any pain it was all in head , I looked in the mirror after my I cycle (13 days) It wasn't me that was looking back , I was convinced I was going to die & at that point I said no more id had enough, the dr spoke to me & that did it I carried on with my treatment , but my mind was not in hospital , laptop/tv didn't work , I didn't have anything to keep me occupied so bored as hell soy mind made its own story , I was getting experimented on , bloods takes every day I was convinced the nurses were in on it , I was in total denial & repeatedly asked the nurses this isn't real ive only got a sore back , they answer no hunni this is so very real you have cancer and we need to get you better for your boys.my boys kept me going , I got out after 11 weeks to see my boys as that was the last time I had seen them , 1st 5 weeks I was in bed like a raggy doll , That was the 1st time I got to talk to my boys , my pain after 2 days started to get better but my spasms were unbelievable , no one I thought could endure pain like that , but I did for my boys , my last chemo cycle I ended up with a urine infection. I also had several episodes of sepsis , so I feel very lucky to be here , not only fighting an aggressive spreading cancer I had to fight sepsis. I'm home looking forward to having my boys for a few days , I have an appointment on Tuesday to give me an overhaul see where this pain is coming from.. wish me luck. 

Good morning Jean, it's a blustery day up in the North.

I had all my second Stem Cell Transplant post treatment clinics at the Queen Elizabeth Hospital Glasgow but my Stem Cell Transplants and Radiotherapy was down across the Clyde in The Beatson. So I know The Beatson well having 9 weeks on full board...... as well as the Pond Hotel as we must have done 30 round trips from Inverness/Glasgow so stayed in The Pond and also for 3 weeks during my Radiotherapy.

Gypsy rover said:

5 weeks I was in bed like a raggy doll

I would say that here is the answer to your all body pain.....lets see what your appointment says on Tuesday. Its amazing how quick the body forgets it's ability to function and the road out rom this low point required a lot of perseverance and determination....... but from what you have said already I think you are in this to win it.

I also ahd a few ICU visits..... to that I remember much about them and the post treatment 'left overs' of Pneumonia and Neutropenic Sepsis were....lets say interesting........ but I am coming up to 3 years since my last very bad infection and weeks DB&B so hopping that my immune system has found their legs.

Alway around to chat ((hugs))