Bloodwise cancer advert - 137 different ones

[MarkD6701]

It's good to see that many of the rarer cancers are getting more recognition as time goes by. Ours is quite prominent on the billboard ads and hopefully it'll allow those who aren't affected to get a better understanding of the problems we face.

However, I do feel the word 'cancer' can be used too much in many cases and it can be frightening for those without fully understanding it's true meaning. I remember when I was first diagnosed, the haematologist told me not to worry too much about seeing it called a cancer, especially at the rate a MPN normally progresses.

[Paul42]

Hi Mark

I think there are two ways to look at it.

Absolutely its vital to remain positive which is clearly what your haematologist was aiming at.

I think however we shouldnt 'understate' the seriousness of the illness, how fast it can progress differs between patients, and its not just the rate of progression, the way the illness affects our lives differs massively between people to, some people suffer so much more than others.

However you view it, whatever you call it, being diagnosed with an MPN is a life changing event.

Whilst the conditions generally can be managed, some better than others, we still have a condition that is potentially life threatening, I have varices as a direct result of the condition and am fully aware if one of those 'lets go' then i need medical attention quickly otherwise...

I think your right about people not understanding, especially if your diagnosed and see the word 'cancer', i know i was in that position, my original diagnosis was MF and when i read about it it scared the life out of me, i was pretty much sure i would be done for within a handful of years. Thats why i think its important to increase recognition to help educate all of us, wether we are newly diagnosed or had the condition for years, or if we are friends/family to help and understand what we are going through.

I wish the first page i had landed on was here....there are so many positive people here regardless of diagnosis, i think it would have been so much less scary than it was and would of helped me realise that i shouldnt believe everything i read online (or even in the booklet i was given at the hosptial).

Paul

[MarkD6701 in reply to Paul42]

Hi Paul, the doctor did mention that in about 20 years time there was a small chance I might get AML, but in the short term should be ok, although I realise that might chance very rapidly.

We shall see. With regards to my varices they were classed as grade one so shouldn't cause issues long term as they were caused by portal hypertension.

regards

Mark

[Paul42 in reply to MarkD6701]

Hi

I think there is a risk of progression for all of us, my understanding IS its something like 10-15% risk of progression from ET/PV to MF but just a 1 or 2 % chance of progression to AML.

I havent been told what mine are graded as, i was told they are 'big' but thats as much as i know. I did see one letter which said they had been caused by 'previous' portal hypertension, which may explain why they have said they have not got any worse.

I dont have portal hypertension now so i dont know why i would have had but i dont now.

Paul

[Polly-PV]

Wow Mark, I have to say I nearly ran the car into the bus stop yesterday morning when I saw the new 'blood' poster!!! Ironically, I was en route to Bournemouth hospital at the time! At last it's being brought into people's awareness and for those who haven't seen the poster/s, it lists what must be every blood & blood related condition there is. Cancer is such an emotive word-my eldest daughter won't even acknowledge I have PV let alone that it is classed as a rare cancer whilst my other daughter is not just a more 'glass half full' kinda girl but more of a 'be thankful you've got a glass at all' kind!! Stay well, much love Poll x

[jazzyb in reply to Polly-PV]

Me too Poll. I was so surprised to drive past the new poster on Tuesday. Great to see our rare MPNs finally being given the publicity they deserve xxx

[Aime]

Hi Mark, I think it is good news that our illnesses are recognised as being blood cancers as this entitles us to free prescriptions and pay out on critical illness policies. As we know with every illness we are all different and handle our illness, etc in different ways. We are unique and so our bodies and emotional state will make our experience of ET, PV or MF unique too. We all know our disease may progress as it has done for some of our dear friends who we have seen handle everything that was thrown at them with great strength and courage.

I firmly believe now (although I do have my worry moments) that there is no point worrying about what may never happen. If the worse happens and my PV progresses then I will deal with it then, along with my family - I actually think it would be harder on them!

As someone said previously they compared our cancer to a football league. I would be in division 6, others with progressive cancers in division 1. I agree with Paul that we do need to admit or recognise the severity of what we have but in as positive a way as we can. As Paul says this forum, along with the MPD website are probably the most valuable supports we are so lucky to have.

Try not to worry too much which is not easy I know and harder if family don't accept that we have a serious illness. Best wishes and kindest regards Aime xx😺