Hi 
My journey started in mid Jan this year when I started experiencing some intermittent abdominal pains. I put these down to being extreme trapped wind or having eaten something dodgy. Over the next 6 weeks the abdominal pain became worse and more frequent along with a horrendous pain going from either side of my back through to my stomach. I contacted my GP after 4 weeks (I didn't want to put any extra burden on the ED after Covid). I thought I had gallstones but an ultrasound at 5 weeks was clear. I was supposed to wait for a blood test in 10 days time but the abdo pain became so severe I ended up in the ED at 6 weeks.
On 03/03/21, I spent most of the day on a drip on the Surgical Assessment Unit having being told by the SHO and the Reg that I probably had diverticulitis. That's not great but manageable I thought. Then, just as I was about to leave the ward (having been put into a bay on my own), the Surgical Consultant, Reg and Sister came to see me and said the CT results were consistent with Lymphoma and the team would be in touch with me. Home I went.
I was admitted onto a cancer ward in pain and with crashing blood levels on 7th March. I stayed for 5 nights and went through various tests. Eventually, I was given the diagnosis of BL and was back on the ward in a few days to start alternating cycles of R-CODOX-M (21 days) and R-IVAC (5 days), which culminated this Tuesday at 3.30am. I was back at home by 8am!!
This week I have found myself indescribably exhausted, dizzy on movement (my ears even popped again with dizziness this evening and that hasn't happened for some time) and very emotional. I'm so frustrated that my mind wants to get on and do things (like take the dogs for a potter or help around the house) but my body really is not willing. I had a blood test today and whilst my neutrophils are at 0, my Hb and platelets are low but above treatment level. The specialist nurse has said this is likely to be the after effects of the chemo and finally coming to the end of the chemo. It's really upsetting me today.
Has anyone else experienced similar? How long did the extreme tiredness last? I know I have to be patient, I just hate not having any kind of timeframe!
Thanks,
Hannah x
Hi again Hannah and good to see you navigated across to our corner.
Your diagnosis and treatment journey is not that unusual as NHL can be a difficult cancer to pin down. The treatments tend to be full on and how you feel is rather normal.
The fatigue accumulates over the cycles and it can take rather a long time to recover..... much longer than you would want.
As your nurse says, the effects of the Chemo indeed stays with you for a few months after so do not be hard on yourself. Take each day as it comes, set small achievable goals each day, if you don’t achieve it there is always next day.
You may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones to recover.
My journey has been 22 years long so hit my name Thehighlander and see my story.
Keep posting ((hugs))
