Follicular lymphoma

Follicular lymphoma is a type of non-Hodgkin lymphoma (NHL). If you're suffering from follicular lymphoma, or know someone who is, join this support group.

Starting Treatment 27th December

Cecren
Posted by

What lousy luck, Wayne!  I hope the bone heals quickly, but feet do take time.  I've had some surgery on mine over the years and swelling is a hassle with normal shoes for a few months, even without any loss of bone density.  My podiatrist made me buy some massive beetle crushers by New Balance.  They look less than elegant, but the comfort was worth it. 

My consultant says I've no sign of disease, so you should look forward to your next scan with hope.  It's been 4 months and 6 treatments for me.  But it's really been plain sailing, looking back.  I still limp, but the scarring in my hip bone should resolve eventually and it's strong now.  Means I can do some serious rehab without wondering if it's under too much strain.

Crutches are a knack. Used them on and off for years.  Worst thing is trying to carry a full cup from the kettle to the table.... But the upside is that you get good upper body strength and remarkable muscles!  I bet your paddling muscles improve during the healing period.   Crutches are also great if you need to hitchhike, but be careful climbing into those high lorry cabs!

Best wishes for a fast recovery!

C

johnr
Posted by

Wayne thats good news on the scan and can I suggest when you talk to your consultant discuss the possibility of that 1cm mass in your abdomen being scar tissue and is the a likelihood you will have scar tissue for a while post treatment. A few of us have had that experience and its not unusual for NHL folk like me who had an aggressive version and bulky disease to be left with permanent scar tissue. Also it can lead to false positives and again the have been a couple of them recently too.

hope the foot heals quickly

John 

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Thehighlander
Posted by

Ah Wayne, that’s all you need. I wish you a quick recovery.

As with John, I am also left with scar tissue where my mass was. As the mass was on my neck it was very visible, it was completely gone after treatment but it has taken me some time to not touch the area as I can feel the scar tissue...... for the first few years the brain would put 2+2 together and get 5.

Wishing everyone all the best.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Jenko1979
Posted by

Hey,

seems to be lots of positive news on here lately which is great to hear.

I’m riding 100 miles this Sunday for charity and have been training every week up to 75 miles rides now since my last chemo in February so hopefully this shows that lymphoma that it won’t stop me doing anything I want to do (maybe in the short term it did).

third maintenance treatment on Tuesday next week if I’ve recovered from the ride by then :0)

paul 

Paul 

WayneSch
Posted by

Hey Cecren,

I am so happy to hear your consultant said "no sign of disease."  That is amazingly good news! Way to go.  I sure understand your comment about "beetle crushers". My toes are always normal in the morning and huge by evening. I'm going to have to buy shoes two sizes larger for a little while, LOL. My gp just says elevate more. 

I think news like you and Fred have received gives all of us hope.

Wayne

WayneSch
Posted by

Thanks John and Mike. Yes, I will bring up the idea of scar tissue on my next consult.   Ya, it is hard to not be feeling around for bumps once you've had lymphoma (despite my wife telling me to stop doing it). 

Wayne

Thehighlander
Posted by

Lol Wayne, my wife is like s stuck record at times.... “stop touching your neck!!!”

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

WayneSch
Posted by

Best of luck on your race Paul.  That will inspire me to lace up my runners once this is all over!

Wayne

BedrockFred
Posted by

Me I never had lumps I could feel anywhere only an enlarged spleen so I have never prodded around for lumps 

The only thing I'm left with is black big toe nail on my right foot had several black nails but the others have fell off and new nails grown.

Mind you I'm back up to my 5 mile dog walks again and lost the weight the steroids gave me 

Just started out on my 2 year maintenance programme ( a visit to the hospital every eight weeks for 2 years)

My team at PCH have been fantastic 

Consider myself a lucky unlucky one but hope my story gives others the confidence to be confident that their teams treatment plans work

Be positive, drink plenty, exercise and be positive your team will get you through it 

Good luck 

Together we are stronger
Jenko1979
Posted by

Hey all,

well, I did it.

5 months after finishing chemo I managed to complete the prudential Ridelondon 100 mile cycle in under 5 and a half hours.

hopefully this shows that life can go on and you can still achieve your goals.

Paul 

Thehighlander
Posted by

Massive congratulations Paul and much respect - well done. 

You are an inspiration to everyone.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Haffygirl
Posted by

Congrats, Paul! What an achievement! You should be massively proud of yourself. Xxxx

Another day survived

johnr
Posted by

well done Paul you deserve that beer!

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Cecren
Posted by

That's a great time, even without the chemo stuff, Paul! 

You do us all proud.

C

Joncol
Posted by

A fantastic achievement Paul. I wish I had known I could have cheered you on. We live about ten minutes from part of the route.

its so great to hear such positive news. 

Jane