Non-Hodgkin lymphoma

Affected by NHL? Join this group to share experiences and ask questions to people who understand what you're going through.

A few questions / observations

Thehighlander
Posted by

Hi and it looks like your first post, so welcome but it also looks like you have been looking into the Community for the past year and 6 years in remission - way to go and s big high from me. Again another encouraging post that help folks process the idea that this can be won and there ya life after cancer.

Getting on with life post treatment is so important, yes, the ‘new order’ of life my not be to everyone’s liking but it’s life and a life to live.

Take care and keep loving life.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Whatcanyoudo
Posted by

I think someone described this as riding a roller coaster blindfolded.

A few weeks ago I joined a few friends on a walk in the South Downs as part of recuperation after finishing the six RCHOP cycles a few months ago.  Lovely weather and walk and 28 miles over two days so legs a little aching on the Monday.

On Tuesday afternoon at work and lower legs felt odd and hot and I was beginning to feel out of sorts.  Roll forward 5 hours and was in A&E with 39.4 temp and shivers and very swollen and red legs.  IV antibiotics and saline drip and out the next evening with more antibiotics  and told it was something called Cellulitis - probably a bite or cut on legs while walking that got infected.  Having managed to escape infection during the treatment I was very surprised how quick you go from fine to yuck.   No idea if happened due to immune system being below par or what.

After a few days found the stomach was a nightmare and had actually lost my appetite from when became feverish.  That took a while to recover and thankfully a friend suggested probiotics which quickly helped.  For a few days I had convinced myself that the loss of appetite was NHL related as that had been something I suffered with at diagnosis.  All common sense went out the window and a major wobble for a few days till the body and stomach settled itself after infection and antibiotics.  

It does feel very much like a roller coaster blindfolded - high of the walk and feeling good after and then the low of cellulitis and another low of remission playing games with my head!

Now have the first 3 month 'check-up' to look forward to at end October...

MIke

Thehighlander
Posted by

Hi Mike, a good description of the post treatment journey. I see the whole NHL thing on 1/3rds The first is all the questions, tests and then diagnosis. The second 1/3rd is the treatment part then the final 1/3rd is the post treatment ‘rollercoaster’ 

For some, a reduced immune system can be a real problem so care and awareness is important during the time that the immune system is ‘kicking back in’

The ‘what if?’ mind games are real and have to be dealt with and it is all about re-building a trust in our bodies again as is highlighted in this great paper that you may have seen.

Well done in doing a 28 ml walk, no chance I could have done that even a year after all my treatment was completed.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela