Watch and Wait Support

[Panda]

Hi all those amazing people here on Watch and Wait.
This is a post to say hello, you are not alone and there is support out there.

Watch and Wait can feel like a weird lonely place with some guilt attached and having to endlessly try and explain to relatives, friends colleagues, what that actually means and why we have been diagnosed with a serious cancer but are not having treatment yet. It’s just exhausting isn’t it? It can cause a great deal of anxiety when you have just been diagnosed with a chronic- blood-cancer.

It took me a while to get my head around it, how was I supposed to explain it to others?

Also what does it actually mean for us now, in the future and mentally, having to cope with the the regular blood testing, scans etc as we go from check point to check point?

I hope I can offer some support here or a thread where people can share.

I was diagnosed with Multiple Myeloma in August 2021. Severe night sweats my only symptom. I dismissed for almost a year.

A friend told me to go see my GP and luckily she very switched on and ran some more in depth blood tests that picked up a red flag. Bone marrow biopsy urgently requested found MM.

It took me a long time for me to actually accept it. My daughter, in her early 20’s and in the same year had just had major surgery had been diagnosed with a life changing illness. I focused my attention on her.

I was terrified of Covid and other illnesses as I was placed on the highly vulnerable list but was in denial about my diagnosis. I received counselling support from Macmillan Cancer support - free of charge and it totally transformed me.

Macmillan Cancer Support | The UK’s leading cancer care charity

I am now training to be a counsellor, ( I hope to offer support to others in the future, given a life changing diagnosis) I am in part-time work, I’m focusing on the positives ( my daughter is doing much better) and I am taking life one day at a time.

Blood Cancer UK has also been a great point of information help and support, plus forums on Facebook.

If you are struggling mentally with all of this I urge you to seek help, talk to your GP, contact Macmillan, chat on here, talking it through with someone is very helpful.

It’s tough on the mind.

Be gentle with yourself, take it one day at a time and DO NOT FEEL GUILTY that you are on Watch and Wait.

Wishing you all well on your journey.

xx

[Erica]

Hi @Panda it is great to hear from you.
I have Chronic lymphocytic leukaemia (CLL) and I have been on ‘watch and wait’ or ‘active monitoring’, which I now think describes it better, for 20 yrs and I count myself as a very lucky girl.
Yes, initially I found it difficult to explain to work what I did not understand myself.
I still get anxious before and during all tests, results and appointments.
I also isolated for a very long while.
When I was diagnosed the shock and emotional side just was not considered.
The way I ruminated and dissected every word and nuance from a medical person.
I always say that my thoughts and emotions have been on high alert since my diagnosis.
I do feel ‘survivors guilt’ with friends, family and others that have not been so fortunate.
Yes, later I did get counselling later.
We certainly do need more specialist counsellors.
Be kind to and look after yourself

[Calathea]

Hi @Panda and @Erica I was on the newbie thread about a month ago, and my diagnosis of chronic lymphocytic leukemia was confirmed about two weeks ago. I am at stage A, so on watch and wait.

The most unexpected thing has been learning how to break the news, since the word “leukemia” packs quite a punch, and almost noone understands “chronic lymphocytic”. I mean one friend burst into tears, whereas I have had time to process the diagnosis and am not crying so easily. None of my workarounds seemed appropriate: it is not “mild”, it is more than a “disorder”, etc. So I now lead in by saying I have mixed good and bad health news, but that my specialist was reassuring at this stage. Only then do I drop the word “leukemia”.

It also helps that I literally feel fine, though I definitely get the sniffles more often than before and still have fatigue. If I hadn’t got the blood test, I would have thought I just had a pesky cold and attributed the fatigue to pre-menopause. Better to know.

My personal approach has been to read as little as possible, which is quite a departure for me, usually a voracious reader. However I quickly realized I could make myself anxious with what might happen - and might not! So instead, I am going by how I feel right now and have to decided to learn about developments as they arise.

[Erica]

Gosh @Calathea you were only diagnosed about two weeks ago.
I just tell people on a needs to know basis.
I found I was seen as ‘Erica, with leukaemia’ for a while and not just ‘Erica’.
If you feel fine perhaps live life to the full.
Be kind to yourself, I was in shock for a long while after my diagnosis.
Keep posting

[Calathea]

+1 on living life to the full

[2DB]

I knew when I told my friends and family that they would be either upset and cry or go quiet and not know what to say.
I would say scream shout cry then keep positive thoughts for me.
I encouraged them to ask questions I’m happy to talk about myeloma to whoever will listen

What I have found is new people came into my life to make this journey a lovely one and some went out of my life that I thought would be there for me
It’s ok I will be there if they ever want to come back

We all react differently and that’s ok we all process news in different ways and that’s ok.

Life is for living and that’s in your best possible way

[Duncan]

I really appreciate that you’ve shared your experiences of watch and wait/active monitoring and that living with this level of unknown has inspired you to become a counsellor, @Panda. We need more therapists!

While I’m not on watch and wait as I went straight from being oblivious to any blood cancer to a diagnosis with Polycythaemia vera (PV) in one fell swoop, I recognise and empathise with much of what you describe. Those us with all sorts of chronic blood cancers likely understand only too well what you’re sharing—living with these disorders can be tolerable but may also become the end of us, and in between we have so much space to ruminate over all the complex cancer treatments and all the unknowns and, frankly, the mortality of it all.

Survivor’s guilt, like @Erica says, must be common when so many of us have chronic yet stable disorders while others seem to have issue after issue. Like @Calathea so poignantly described, even sharing news of our diagnoses can be rife with difficulties as leukaemia is still so misunderstood and any mention of cancer can send people running. For example, I didn’t even know my Polycythaemia vera (PV) was a chronic leukaemia until recently when some random friend of a friend started breezily telling me all about it from their experience of someone else living with leukaemia! This echoes what @2DB so astutely noticed about reactions to our cancers as I’ve lost loved ones since my diagnosis, which seems ironic as I haven’t died and yet they behave as if I have! Apparently, living with any of these blood cancers are pretty extreme crash-courses in oncology and self-care!

So I wholeheartedly agree that we survivors of these various horrible life-threatening disorders should seek any help we might need, even if it’s beyond our usual comfort zones. Therapy is a form of healthcare, after all, and our psyches need looking after just like our bodies. I hope your counselling training goes very well and your personal therapy continues to help, @Panda. Hope your daughter is on the mend too.

[gordo]

just reading everybody’s interesting posts…i have just past year mark…on wait and watch for Chronic lymphocytic leukaemia (CLL).go back to consultant couple weeks had bloods done last week,so i will find out soon…it was pandas comment about dont feel guilty about being on watch and wait…most of my friend’s and only hand full work colleagues know…but what realy is getting to me is most of the comment’s (your looking well) i want to scream it not the outside thats broken its whats happing inside,i know they wish well…just keep going and live life…

[Foxy1]

Hi I was diagnosed with Chronic lymphocytic leukaemia (CLL) in December and on watch and wait, quite surreal being told you have Leukemia when you feel well apart from a swelling on your neck and face. I’ve still only told the people who I had to, work, immediate family and close friends who knew I was having tests, don’t really want to tell anyone 'cause I’m still me.

[Erica]

Hi @Foxy1 I am so glad that you have found us, welcome…
I also have Chronic lymphocytic leukaemia (CLL), I was diagnosed 20 yrs ago and I have always been on watch and wait (active monitoring). Everyone is different and some start treatment straight away, I have been a very lucky girl.
I felt my diagnosis was surreal too. I felt in a bubble with the world going on around me.
You say that you were diagnosed in December, so was I, the 16th, and yes, it was a very weird festive season that year.
I can really understand why you say you don’t want to tell people 'cose you are still you.
I told quite a lot of people and yes, I felt I was looked at as ‘Erica with leukaemia’ and not just ‘Erica’ for quite a while.
I attach the Blood Cancer UK information on Chronic lymphocytic leukaemia (CLL)
Chronic lymphocytic leukaemia (CLL) - what is it, symptoms and treatment | Blood Cancer UK
The Blood Cancer UK support line is there for you on 0808 2080 888
Really look after yourself and please do keep posting I look forward to hearing more about you.