HELLO

Well a big hi back to you Pufflehuff and a very warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

I was diagnosed way back in 1999 with a rare, incurable but treatable different type of Low Grade Non Hodgkin’s Lymphoma Stage 4a so although my Lymphoma ‘type’ is different I know this journey rather well.

Follicular Lymphoma is the most come type of Low Grade NHL

This brings the advantage of lots of research and lots of treatment options. Like my type of Low Grade NHL - Follicular Lymphoma is actually incurable but very treatable with people living long and happy life.

Think it as a chronic health condition like say Diabetes but unlike diabetes where people have to take medication all their lives and should they miss some medication there are serious complications…….. Low Grade is just not like this with people going meany years between  having treatments.

Knowledge and various support platforms are very important. This community is always around to support and answer questions as best as we can.

R-CHOP is a very effective treatment and on the whole folks get through it well, yes some side effects but it’s important to remember that this part is temporary

At this point I will always highlight the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos, webinars….

They run regular Regional Lymphoma Online Support Groups for both patients and Carers. The carers groups would be so helpful for you as you can connect with others with children who are dealing with the same issues.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

Always around to support and answer questions ((hugs))

Good Morning, thank you for your reply. You have absolutely nailed it with the chronic illness, its so funny how you mention that. As I know all to well about chronic conditions having been diagnosewith several myself, that is exactly how I explained it to my husband. Think of it more as a chronic illness that will always be a part of you rather than the dread that regardless of your diagnosisnd prognosis, the moment that 'C' word is mentioned, you immediately fear the worst that this horrid disease can throw at you. We are very much a glass half full couple and are right now very optimistic and hopeful that the treatment will do what they want it to do. They have already told him that if all goes to plan, he will be going into the Maintenance Therapy afterwards. The only issues at the moment we have is the period immediately after treatment. So this weekend we have totally written off. He is tired, nauseous and generally just not very comfortable. As a very active man he really struggles psychologically with the fact that he can't really do much other than sit around. The period of time he takes his steroids he isn't much better. He's up, on his feet even cooked some dinners last time (his way of feeling like he's actually achieved something that day). But he fatigued really easy. He wanted to put a shelf up, I told him to go careful, he got stroppy with me. I mean, its a 5-10 minute job right? Nope after just drilling holes, he was on the floor pouring with sweat mumbling and cursing at how ridiculous it is he can't drill holes into a wall without wearing himself out. But luckily, during the second week and throughout the third, he was pretty much back to normal. We are hoping that it's the same this time round too. If it is, it will help him enormously, because if he feels he can at least plan and gain a little control back in his life, he will be so much more relaxed. The only other issue that brings the emotion out is his hair. Sadly he was told he will lose his hair due to one of the drugs he's having and it has begun. I am hoovering his side of the bed every morning and he keeps putting his hands through his hair and coming away with lots of it on his hand bless him. At this moment in time we are very positive, but I won't lie, it waivers now and again and the what ifs start creeping in. Such as, what if this round of chemo doesn't do what they want it to do? What if the Maintenance Therapy doesn't put him in remission for as long as they hope they can get out of it? What if it comes back in a different place and is more aggressive? All those types of questions. But we are just taking it one day at a time, one foot in front of the other and hopefully we can just keep moving forward even if it is all baby steps right now. I have found the Lymphoma Website very informative and actually features some locals to us. It has been so positive and enlightening. It has been a real help along with the book we were given. All very easy to follow without filling us with medical jargon. The main thing we want out of this is just to try and keep our little family on an even keel, keep our girls in the loop but not scaring them. So far they have been little superstars and other than having to accept over the next few months that there will be periods of time that dad will pretty much be living in his recliner recovering from treatment and having to take a step backwards as far as Covid goes with regular handfasting, sanitising and back to wearing our masks in and around people, we are pretty much just carrying on as normal as we can do and just hoping for the best 

I have no idea where those emojis came from. How odd ha ha 

Hi again, this all sounds like a rather normal treatment rhythm. But men can think they are superhuman and often fail miserably resulting in then getting irritable and angry.

First few days you have the steroid high, then the steroid drop and by then he is into the next phase.

Generally it takes about 48 to 72 hours for your body to break down and/or get rid of most chemo drugs. But the effects of the chemo on your growth areas and your general immune system will last for weeks and is important to remember that you may well be more open to infections at about days 7-14 as this tends to be the window when our immune system is at its lowest and there is an increased risk of infection.…… then your body recovers in time for your next cycle….. but the more chemo you have the longer the recovery can take so by the end of treatment it could take a few months this to recover completely

You can hit my profile to see my long journey but do remember my lymphoma is very rare and hard to treat but the main challenge I had during my main chemo was Fatigue but some simple exercise stops some of this developing.

But when the body says test he MUST rest as the fatigue will increase as time goes on.

Our granddaughter’s we’re great and fussed around me and it was a great opportunity to be a Nurse or a Doctor……. as they don’t have knowledge that makes this a big issue they tend to cope well.

The what if’s?……. as you know I have been on my journey for coming up to 23 years and relapsed multiple times over my first 17 years but the developments in treatments that could be used for my type of NHL did put me into the longest remission I have had back in Sep 2016.

It’s all about accepting that this is what it is and not letting this define your lives but aim to control the narrative and live as normal as possible.

Going through treatments like R-CHOP has to be be seen as a time that will pass and it’s not permanent.

As for hair, I also had it falling out rather quickly so went straight into the shower and shaved the lot off……. it was one more thing that I did not need to stress about and it will grow back anyways.