Hi,
I am due to start my R-CHOP (6 cycles) next week if all goes to plan. I finally got a PET scan this week and my team will review and give the Go/No Go decision on Monday coming. Before the scan my only known lymphoma site was in my tibia bone marrow but I am having some pain in an elbow and waiting to find out if that is coming from the same issue or not.
My question is more about the side effects of the treatment and how much do you think it is feasible to continue work. I have a pretty physical day job which also involves standing 2 hours at a time in temperatures below freezing. My work have said they can find me alternative duties answering phones or standing at sales desk (working on tills) if necessary instead of my usual cold work but until the treatment begins I have no idea how much I am going to be able to even turn up for work. My initial plan was to try and work as much as possible in the second and third week of each 3 week cycle but to be ready to step right back to just working the 3rd week or barely at all if that became the case. As a full timer I normally work shifts between 7 and 10 hours (with only 45 minutes total planned break in a 10 hour shift)... will I end up doing much shorter work days ?
Just interested in the thoughts of people who have been through this treatment before, and also if anyone has any idea of what government benefit support can be claimed (UC? ESA?) instead of / in addition to company sick pay if I end being off more than working for the duration of my treatment.
thanks for your help and good luck everyone else in their journeys...
This is great new and long may it continue.
The whole virus lockdown is a bind.... there is an ongoing conversation in the FL-NHL group around the restrictions.
From my point of view 12 weeks is actually not long...... this is based on my post Stem Cell Transplant isolations..... 6 months following my first transplant and 9+ months after my second transplant.
If you look at the FL conversation you will see the story develop....... we were going for 2-3 mile walks in the forest behind us every day...... we have had to stop this as there are more families wondering the forest and the 2m rule just can not be observed......"why take the risk" we decided - we can't jeopardise all the hard work that went into getting remission.
I was diagnosed in 1999 with a rare type of Skin NHL. I am now over 4 1/2 years post my last treatment and 3 1/2 years in remission.
My GP phoned me just after the word about 'shielding' came out.... it took a good week for me to get the official letter........ She said that I had to "behave myself"
A week before my GP called my team Cell Transpalnt Team made contact “……you need to think that you have just come through all your treatment again and take exactly the same precautions as you did then........”
She also said ”……. once a blood cancer patient always a blood cancer patient"......... " All the treatment you have had has indeed had a long lasting effect on the effectiveness of your immune system even although your bloods are ok with a few at the lower limit range of acceptable, like any virus you are at risk but this one we don’t know how a post treatment patient will react - let’s be safe and not sorry”
Stay safe - not sorry.
Hi again, yes the past COVID year has made ‘normal’ life rather odd, actually what is normal life. I was looking back and it was the 11 March last year when my GP phoned and gave me warning about the impending Shielding that was about to be put in place.
The on/off lockdowns will have been difficult to navigate work wise. I am retired but am involved with a local community support centre so we have had to navigate the furlough of all our staff.
Keeping active has been our priority so we have aimed at walking 3-4 miles everyday, including over the winter months.
On the whole the year has been ok, done a lot around the house, did fit in a few days away and a trip down South to visit our 3 granddaughter...... and just last week the snow we have had since before Christmas has gone.
“100% Cured”........ don’t be hard on yourself...... even although it’s a year since your last treatment.... it’s only a year!!
I think it’s Important to understand that ‘cure’’ in some ways is all about length of time post treatment with no more evidence of NHL, the nominal time for this is 10 years but I am sure johnr will correct me as I had a different type of NHL but he had the same type as you.
Your body was put through stuff that it was not designed to go through so it takes some time to recover abd at times much longer that you would like or even imagine.
Fatigue can take some time to work out of your system but it sounds like you are doing the right things to over come this treatment ‘left over’
Do take care and let’s look for ‘life’ to open up more as the infection rates reduce and the ‘normal’ world opens up again.
