Evening all
Its taken me a while to post on here after my diagnosis back in June-25 . So my journey is starting to kick in i think now .Having been given the news in June-25 i have now been told i am on a watch n wait as it is low grade at the moment . I had a follow up after 3months end of sept n there was no change n again in Jan-26 with again no change . So my question is does anybody else feel like its like waiting to be hung ? By that i mean i go about ny daily routine as normally and try and lead as normal life as possible but when it comes round to my 3 month check up i get so anxious about what the blood test will show . My family are also finding it difficult and have commented that its like waiting for me to become ill . I try n be positive for them all but they are all struggling too . I know i could be on this watch n wait for a long time but i cant help how i feel . Any suggestions to get through this would be helpfull
Kind regards
Shaun
Hi again ShaunDancar66 and well done navigating across to this group and putting up your post.
It’s been 9 months since I put up a reply to your post in the New to Community area of the site….. so some time has passed.
As you may remember I don’t have Mantle cell lymphoma but have been on my Lymphoma journey since 1999 when I was diagnosed with my first type of Non Hodgkin’s Lymphoma (NHL) at 44 years old.
My first NHL is rather rare (8 in a million), it is an incurable but treatable type of slow growing Low-Grade Cutaneous T-Cell Skin NHL…… I had no full on treatment like chemo, radiotherapy over my first 14 years but as my Lymphoma was presenting on my skin…… at times my body was 70% covered with little tumours I was having regular light therapy and other skin treatments.
But I continued to work for 12 years in a demanding teaching job on a full timetable fitting in treatments during my non teaching periods and holidays….. and basically lived a normal life, doing normal things.
I eventually reached Stage 4a in late 2013 when a second, very rare (4 in a million) very type of aggressive Peripheral T-Cell NHL was then presenting so this was the green light for 2 years full on n treatment but I am now over 10 years out from my last treatment, turned 70 back in Nov and continuing to live a great life…. yes my Lymphoma ‘types’ are different but most definitely appreciate the challenges of this journey rather well.
You may already know that there are a few different types of Mantle cell lymphoma (MCL) and can range from being fast growing and in this case treatment often starts quickly.
But in other cases….. rather like my first type of NHL your Lymphoma is growing slowly.
This is when you are put on Active Monitoring (Watch and Wait) …… this always sounds crazy….. I hear you say “I have cancer - treat me!!!”
But lymphoma is a very very different cancer compared to most other types of cancers and treatment is only used as and when it is needed and at the point where it will be most effective.
Like my first type of NHL you MCL is going to be with you for life….. over my first 16 years I relapsed multiply times with the longest partial remission being 9 months….. before treatment was started again…… but this did not stop me living life to the full.
There is a point you need to reach that you accept you have a chronic health condition,
Just last night we were a number of friends and one of them has type 2 diabetes. He had ‘a turn’ as he called it….. he has been diabetic for over 50 years and he often has episodes….. as long as he deals with it quickly he is fine but if left the consequences could be serious.
Back in 1999 my consultant said the living with an incurable NHL is like living with a chronic health condition…… the big difference is like say diabetes you are on treatment for life and when it goes wrong it goes wrong quickly…… in Lymphoma you only get treatment as and when required.
Our daughters were 14 and 18 when I was first diagnosed but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters.
I have said enough…… do come back with your questions and I will do my best to help you out.
Are you in the UK?
Hi Dancar66 I deliberately left your post for over 24 hrs to see if any group members were looking in or had any first hand experience of fatigue when on Active Monitoring (Watch and Wait)……
Fatigue, having little or no energy is a chicken and egg thing.
During my early years following my first diagnosis (1999) I was initially dealing with the balance of living life with a chronic health condition.
I eventually found the balance between being active but knowing my limitations…… especially when I was teaching.
On one hand…… the more you do the more the fatigued may build up……. But on the other hand the less you do the more fatigued you can get as the body closes down due to the lack of mental and physical activity…… especially muscle loss……. A good, healthy diet is also very important.
You will see how in the link below how Fatigue can be caused by a number of things….
Living the pre-treatment world is a balance….. but as always, if you feel the fatigue (and any other issues) is getting significantly bad…… I would be talking to your clinical team to get their take on it.
If you are in the UK you may want to check out UKs main Lymphoma charity Lymphoma Action.
As you see, this group is on the slow side and this may well be down to the high profile of Lymphoma Action.
The Lymphoma Action website has lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
All the links I use are taken directly from their website and I have volunteered with them about as long as I have with Macmillan……
I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey…… especially their Active Monitoring monthly online support group.
Their Closed FB group alone has over 6300 members and a good number have MCL…… unfortunately you would most likely bump into me on there also ;)
They also have a great Buddy Service where you can be linked up with someone who has walked the same treatment journey.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
