New ET member

Hi Skaro, welcome to the community. I’m so sorry we had to meet here, of course I wish we had met elsewhere. A very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m afraid I don’t have ET, I have MDS (myelodysplasia) which is a blood cancer also but I hope someone will pop up with the same cancer. There is the odd one who has ET because I have chatted with them 

After I was diagnosed with bone marrow cancer I became a wheelchair user within a year due to an entirely different condition than the cancer so I can empathise with you in that respect. I had to buy a motorised scooter because I was finding it difficult to push myself any distance. 

If you click on my username you'll see my profile. l had a look for yours but you haven't filled yours in yet. We'll chat again I hope.

Take care Skaro 

Tvman 

Hi Tvman and thanks for your kind reply. I’m very sorry to hear about your cancer, and that’s especially rough you were diagnosed with another debilitating condition. I’m thinking of getting one of those powered attachments you can stick on the front of a wheelchair. I bought an overlander chair a few months ago and it’s quite good on grass and country paths, but I still need pushed.  The trouble with my legs is that I can be walking and then the energy just drains away, so you never know when it’s going to happen. 
As I’m so new here I’ve not even looked at the profile bit so I’ll need to see how I go about adding stuff. I’m still learning how this all works!
I hope you have a good weekend.

Skaro

Hi Skaro and welcome to this corner of the Community. I am Mike and I help out around our blood cancer groups and good to see my ‘old’ friend tvman picking up on your post.

I don't have Essential thrombocythaemia (ET) but I was diagnosed way back in 1999 with another rare, incurable type of blood cancer Stage 4a in late 2013 so I do know this journey rather well it not necessarily your exact challenge.

There are a number of active ET group members at the moment so why not click on the main ‘Main Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

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.

Hello and thanks so much for your reply.  It seems you have indeed been on a long journey with your cancer so I hope things are stable for you.  There are so many blood cancers and I didn’t realise this until I was diagnosed. My first husband died of AML 30 years ago so I had a little knowledge of blood cancer but I was amazed to find out how many types there are. I’ve checked out MPN Voice and have done some fund raising for them, and they do have some good videos especially on coping with fatigue. The Maggie’s Centre is a good suggestion so I’ll look into that. 

Three years ago I used to be an energetic person, with lots of walking, dancing and just being out and about.  My job was also a mentally stimulating one with lots of engaging with people and having to think on my feet.  I guess I’m still coming to terms with all of the changes, partially hidden due to lockdown and nobody being out and about much.  Not being able to do all the things I used to has been difficult at times, and one specialist nurse told me I had to grieve for the person I had been. Sometimes I tell myself it’s all in my mind and that I can physically still do things, and then I try and subsequently feel really grim and knock myself sideways for a couple of days. My partner is great and so supportive but I occasionally feel he babies me and stops me doing stuff. It’s not an easy, straight road is it? 

Anyway thank you again for your advice and no doubt I’ll speak to you again.

Skaro

Hi Skaro,

having just read your post I can identify with how you're feeling.  I was diagnosed with ET & have just stopped Interferon due to my mental health suffering after 8 months. I still suffer with insomnia, sweats (night & day), sore mouth, weakness, bone & joint pain, gum pain and fatigue. I feel extremely low atm and have no interest in anything. I live alone which I'm sure doesn't help. Everything is so hard ...and bleak!

Hi Yvarna 

So sorry to hear you’ve been feeling down.  I complete get that although I find that I go through phases of feeling low. I’ve had a few days of feeling absolutely awful with fatigue but it’s probably because I’ve had a busy week. I find mental stimulation just as tiring as doing physical activity, and yesterday I was totally drained and could do almost nothing. Much better today though.  That’s the thing isn’t it - you never know when it’s going to hit, although I’m learning to plan ahead if possible. I have a wheelchair for very bad days but also try to do some exercise when I can. Have you joined MPN Voice? They occasionally have in-patient forums around the country. I went to one last autumn and it was great to meet up with other ET patients. Have you spoken to your specialist nurse?  Or someone on this forum? I think the main thing is to know you’re not alone although sometimes it feels like that. I really hope you can get some support from whatever sources. The folk on this forum are great.  Wishing you all the best. Skaro x