New member

Hi Alice1810, , welcome to the incurable cancer section of the community although I have to say that I'd rather have met you elsewhere. 

I also have a blood cancer but mine, unlike yours, is one that has too few red cells, it's Myelodysplasia or MDS. I was diagnosed in March 2015 at the age of 57 and as it's a very rare cancer there isn't a lot of information about it. I truly wasn't expecting to reach the age of 60 yet here I am at the grand old age of 64. Along my journey my red cells have gone dangerously low. On occasion my neutrophils have dropped quite low rendering me with little or no fight against infection and in addition my platelets have dropped low also.

Worse (?) was to follow, about 4 months after my cancer diagnosis. I was also diagnosed with severe spinal stenosis. My back condition worsened and in January 2016 and become a wheelchair user. I was forced to give up my self employed job of 35 years. All plans for our future went out the window then because I was unable to keep my pension payments up. I suppose one bright moment or moments was that we were able to enjoy trips and holidays that we had missed because I was always working, sometimes 7 days a week. 

I was considered young to have MDS but my goodness' to be faced with a blood cancer at the tender age of 21 must have been a helluva shock. There aren't too many with blood cancer here in the community, indeed a dedicated area was only given to us about 18 months ago. 

Apologies for the long message Alice. I am looking forward to having a few chats with you in the future. This is a great place for giving and receiving support as well as just chatting with other incurables. It's our own corner of the community. There'll be other members popping in to say hello in due course.

Take care and stay safe Alice

Tvman xx 

Wow, what a journey you have had, it must have been really difficult if its not as known as the professionals wouldn't be able to answer al though questions we all have at the start of the diagnosis.

It really was a massive sock and confusing time I have learnt to accept it is what it is , but mu mental health is shot for it massively.

Although I'm still working and raising a 9 year old it's hard to see a happy ending as it's incurable and I will need to be on some medication forever.

Thanks for reaching out it's good to no we are not alone in this cruel existence 

Hi again Alice1810 and we’ll fine navigating across to the group. I am pleased to see my friend tvman has pick up on your post.

As I said in your post in the New to Community I don't have Essential thrombocythaemia (ET) but I was diagnosed way back in 1999 with another rare, incurable type of blood cancer reaching Stage 4 in late 2023 so although my condition is different I do appreciate this journey rather well.

In the early days it’s all about understanding and once you get more information and talk with others the journey will get more understandable.

Let's look for the members with this condition to pick up on your post, you can also look through all the group threads (hit the group name and scroll down) and as always you can hit reply to any post.

Talking to people face to face can help a lot but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing and each centre do run monthly Heamatology Support Groups most are online at the moment….. the one i attend does have a few folks with ET in it so worth checking.

The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

You may also find our Ask an Expert section helpful but do allow a few working days for a reply.

You may also want to check out MPN VOICE UK for some good information and have various support platforms.

Always around if you need further help or just want to talk

Thank you for that information. I have recently called macmillian and they are looking into financial help and the grant which may be accessible to me. It deffo will help hearing from others who have the similar struggles. 

Good that your are already using the services.

Like yourself, when I was first diagnosed back in 1999 it took time time for me to understand that I could actually live a ‘normal-ish’ life whilst living with my condition.

You basically have a life long health condition that is treatable (unlike many chronic health conditions)

It’s all about trying to not let your condition define you life…… yes there will be bumps in the road but you need to be looking for the gold  that us around you and enjoy life as best as you can.

I worked in a demanding teaching job for the first 12 years of my diagnosis before I needed full on treatments.

My last main treatment was Oct 2015 and yes I remain incurable and am on meds for life but I won’t let this rob me of enjoying life ((hugs))

That is inspiring, I will continue to grow from this 100% it just is very debilitating especially when I first started interferon a month ago. Macmillan have been a great support 

My journey was very different (hit the link below to see you cancer story) but I was getting Interferon alfa (a) injected weekly subcutaneously. I was going to the hospital at 7am to get the injections then into work…… it was all a ‘pain’ but it’s amazing what the body can accommodate when it want to ((hugs))

Wow I read your cancer story, you have been through a lot!!! And your still making others like me feel a bit better, how did you children cope if u don't mind me asking. My 9 year old is not really aware but knows I feel unwell quite a lot 

My two girls were about 14 and 17 when I was first diagnosed in 1999 with our 4 granddaughters all growing up with me having my condition and going through treatment - the oldest is now 11 and the youngest is 7 and they  (and my daughters) have not had a problem with me having chronic health condition and me going through treatment.

I think children and teenagers are far more savvy with regards to health. We were totally open sharing all the good and bad…… and as you see I had some bad times.

Don't over think this but if and when you have to go through any full on treatment you do talk with their school to make them aware.

We always talked about the various chronic health conditions and how many conditions were far more challenging them my cancer and unlike conditions like MS, Parkinson’s my conditions was very treatable.

Wow I know children are very resilient and my son shows me that everyday. The best way is open and honesty. Thank you for your support