Fatigue

Hi Budgiemum and a 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 don’t have Follicular Lymphoma but I was diagnosed back in 1999 with a rare, also incurable type of skin NHL Stage 4a so although my Lymphoma ‘type’ is different I understand the challenges of this journey well.

Sorry to hear that your daughter is suffering with Fatigue. This unfortunately can be one of the challenges when on Active Monitoring (Watch and Wait)  as her immune system is having to work overtime and this can drain her energy levels.

How active is she?…… I know this will sound counterproductive but keeping some regular simple activity going can actually help. The less you do the more fatigued you can get as the muscle memory starts to diminish compounding the fatigue…. Yes I know it sounds wrong.

How is her diet?…… is she eating regularly?…… food is fuel and she needs this fuel to produce her energy.

You can’t underestimate the power of the stress of being diagnosed and living with an incurable type of Lymphoma can bring.

When was she diagnosed?

Has she actually had had any treatments?

How regular are her checkups?

Has this developed more since her last clinic?

Thanks for replying. She doesn’t have much appetite at all but does try to eat little and often. She does housework and weather permitting we do short walks, about a mile. She was always a very active person and it has hit her hard. (She is in her 40s by the way). Her next appointment at Christie’s is in 3 months altho she has been assured that she can ring them any time,but she is very reluctant to do this and fears being a nuisance! She is not having any treatment yet.

Thanks for getting back to me. It’s such a hard time looking on and knowing what to do to help.

She is actually doing well-ish. It’s a hard/stressful time trying to ‘live’ with a cancer that is not requiring treatment knowing that at ‘some point’ it may well be needed.

She needs to eat as well as possible as this is her main tool to build up her energy levels. So lots of protein.

The Christie’s would far rather field phone calls rather than find out things have changed months on so she should call her CNS and have a chat - that is what they are there for.

What type of NHL does she have?

This links I have given you are taken from the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos.

They also run regular Lymphoma Online Support Groups for patients with a few groups specifically for Family and Carers...... I highly recommend these groups as there is nothing better than talking with other who are walking the sand journey.

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

They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.

Always around to chat.

She has follicular nhl, in the lymph nodes in neck. Thank you for your help and support .

Follicular Lymphoma is one of the most common types of Low Grade NHL. Although it’s a life long illness it is very treatable but folks can go for a considerable time before treatment is actually required.

You will see from my profile (hit my community name) that it took 14 years before I needed full on treatment although I was having regular skin treatments due to the rare nature of my condition.

Lymphoma is a complicated condition and can fluctuate all the time.

I did almost 7 years on Watch and Wait, they wanted me to do 10 I think.

You have to sort of get used to the fatigue.

No matter how much you sleep you still feel drained.

Also the shock of diagnosis takes a while to get over.

My job is quite physical and I get up at 6 , most nights I am falling asleep by 8.30

Budgiemum- hi!

I was diagnosed last November with follicular NHL and am on watch and wait. Feeling very fatigued myself but tell her to listen to her body and rest when needed.  Walking is really good for the mind and body. Sending positive hugs x

Hi,

it’s been a while since I checked in on here but have certainly ended up down a rabbit hole catching up on everyone’s journey.

I can most definitely relate to everyone’s fatigue symptoms, I was diagnosed nearly a year ago, got my 1 year diagnosis in a couple weeks, I haven’t had any treatment and no plans too - just watch and wait, fortunately I have been pushed out to 6 monthly checks now.

I concur with most people on here that unfortunately there isn’t much you can do other than to embrace listening to your body and resting when you need to.  

I’ve certainly moved towards this as a bit of a mantra - do what I want, when I want, eat what I want and to most of my loved ones disgust say what I want too

I hope this helps … always happy to have more of a chat, or connect on socials to talk more