Hi everyone
been a while since I wrote anything in this group. I hope everyone is doing well with their personal battles.
I got the good news that I’m in remission and there is now no sign of lymphoma. I will admit I cried when I was told (I’m not a cryer!).
I’m looking for a little advice/info on long term side effects. My last r-chop was end of January and since then I have suffered terribly with a number of side effects which just seem to be getting worse and worse.
firstly there is the loss of smell and taste, which I lost right at the beginning Of treatment in October. Then there is the absolutely horrendous tinnitus which has just got worse and worse and is now put me at my breaking point. The headaches are next, it feels like someone is crushing my skull and stabbing in the back of my head. Then I have the feeling of congestion in my nose which turns into like a hot flush. I also get a pain down my right cheek. I also constantly feel dizzy and ‘wobbly’ and zero energy. I honestly thought that 4 months after finishing treatment I would have started to improve but I just seem to be feeling worse and worse. I’ve finally got in touch with my consultant who said it could be nerve damage causing it all and has prescribed me amitriptyline to see if it helps.
has anyone experienced any of this either during or after finishing treatment? It’s really starting to drive me insane. I’ve been unable to return to work as of yet and I really need to get back to some normality.
Any help, advice, anything would be very much appreciated.
I wish you all well with your own struggles
Hi again Vickster47 Great news that you are in remission and there is now no sign of lymphoma. It is indeed an emotional journey so a few tears are allowed…. even a big Highlander shed some.
Once upon a time the NHS had enough money that folks like yourself would would be able to attend a post treatment rehabilitation facility where all the issues you are having would be unpacked and tools put in place to help you recover........ unfortunately this has all gone so folks can be left to drift and fend for themselves.
Post treatment side effects can unfortunately be part of the post treatment life. You are ‘only’ 4 months out from treatment. I say ‘only’ as you do have to remember that treatments like R-CHOP are a big hit on your body with the effects accumulating over each cycle and often the recovery is seen in many months not a few months and often things can get far worse before you see an improvement.
My head Consultant told me that going through treatment was like doing a boxing match and a marathon every day I was going through treatment and this was done without any training……. Think about doing the London Marathon with no training…… and you had to complete it as your life depended on this…….. this is the journey you have been on.
Fatigue (of doing the Marathon and boxing match) takes time to recover, your body has been through far more than you imagine.......but the more you do the better things will get……. On the opposite hand the less you do the longer the recovery takes.
Nerve damage can indeed do one of the main causes for a lot of these aches and pains. I had bad headaches for a few years and this was directly connected to some nerve damage where my mass was. The chemo attacks our cancer presentation areas but there is always collateral damage to good cells and nerve endings can get severely affected so these can take a considerable time to recover.
The main advise I was given was to keep a regular routine of activity….. even although at times it was painful but I had to push through and rebuild the muscle mass that had been eroded during treatment and this in turn helps the nerves recover.
4 months on from the end of my last treatment and once I was out of my wheelchair and on my feet my Specials Cancer Nurse took me across to our local Maggie's Centre where she enrolled me in the weekly circuits class where a cancer trained instructor put us all through various exercises to build up our muscles and revive our nerve endings.
It took me a good 2 years to get back to ’normal’ but I have to say that I was in a very bad way.
Loss of smell and taste again can take times to recover. The mouth area is one of the most sensitive areas in your body so try some strong flavoured foods, at this point in time your body is still recovering so needs to ‘fuel’ to recover so mindless eating is all you can do and this will slowly recover.
It's unfortunately the same with tinnitus as your ear is full of nerves but again as these nerves recover things will eventually improve but often it does get worse before it gets better. Think of doing an activity that you have not done for years and the following day that pain in your legs……. It takes days for this to improve - you have to push through.
I am 6 years 8 months out from my last treatment and I am left with long term Late Effects with my main two being a Heart Condition (Had a heart attack 6 weeks ago so had to get two stents put in)..... I also have treatment related deafness with my Right Ear 85% loss with remaining 15% a muffled sound with continuous pulsing 24/7 and Left Ear 50 – 60% loss + Tinnitus and now have two hearing aids........ but these are all managed and on the whole do not have a great effect on my life.
Living with and beyond lymphoma is a challenge but you my want to check out Lymphoma Actions Live your Life (self-management) programme. This is an online course that helps you work through all the post treatment challenges.
Maggie's Centre run a where now? course and I found this very helpful.
Happy to chat more but from my experience it's all about setting a mindset that you don't let the post treatment 'stuff' define you but you have to take control and make things happen and define where this goes.
I had 4 months - twice weekly physiotherapy to get me back on my feet and was given exercises and resistance equipment to help overcome the muscle wastage and nerve damage.
The post treatment journey is the forgotten 1/3rd as we are well looked after during the first 2/3rds during diagnosis and treatment.
