Would any one being treated for an MPN at the Churchill Hospital, Oxford like get in touch?

[Rachelthepotter]

Hi

I have myelofibrosis, diagnosed in 2016 and I'm now being treated at the Churchill Hospital , Oxford. If anyone else with an MPN is being seen there too, and would like to get in touch, do please do send me message, or make contact via this forum. My impressions so far of the hospital is that it is open to patient input. I live in Surrey, but for me the travel time to the Churchill Hospital is less than the time it takes to get to London and to Guy's (where I was treated first.). The excellent Australian CNS there is a huge help -she answers phone calls and sends me copies of my blood results, and in general is making life a lot easier for me.

The hospital has a Maggie's centre, so if we wnated to meet up, we could maybe meet there for a cuppa and a chat. But just being in email touch would be helpful.

All the best

Rachel

[bordeauxgirl]

Your right to try and make contact with other MPN'ers , I have not found one person where I live who has this problem and it makes me feel very isolated when you don't have anyone to bounce off. good luck in your quest. June . PS Anyone in

Guernsey by any chance?

[Tertia3 in reply to bordeauxgirl]

I don't want to make you jealous, but there is a lady with an MPN living just 3 doors up from me and we live in a very small village in Bucks. What are the chances of that!

Best Wishes,

Caroline (ET diagnosed Oct 2017)

[bordeauxgirl in reply to Tertia3]

Drat !

[Tertia3 in reply to bordeauxgirl]

Sorry!

[Melaniem59 in reply to Tertia3]

Hi Caroline

Where are you both in Bucks? I’m in Herts, near Hemel Hempstead

Melanie

[Tertia3 in reply to Melaniem59]

Hi Melanie,

I'm 5 miles outside Aylesbury. Hemel Hempstead is about an hour and a half on the 500 bus or about 35 mins by car, if I was brave enough to confront the Magic Roundabout!

Best Wishes,

Caroline

[Ovingite in reply to Tertia3]

Hi Caroline, small world indeed! I also live in a small village in Bucks (near Aylesbury), but as far as I know none of my neighbours have an MPN. I was diagnosed ET JAK2 in 2017 and get treated at Stoke Mandeville hospital. Which hospital do you use?

John

[Tertia3 in reply to Ovingite]

Hi John,

I guessed where you lived. Your name gives it away! ( Assuming you still live there) When we decided to "Escape to the Country" we looked for houses round your way so I could have been your next door neighbour! I am about 5 miles out of Aylesbury and go to the same hospital as you. I only go there once a year now and get phone calls every three months of the rest of the time. I'm ET JAK2 + too.

I have followed your posts with interest knowing that you were nearby and most likely treated at the same hospital. Nice to have made contact!

Best Wishes,

Caroline

[Ovingite in reply to Tertia3]

Spooky! If nothing else it blows my theory that if only 1 in 100000 people get ET, and Aylesbury vale comprises about 80000 souls, I was likely to be the only one in the area 🤔. So much for that idea then! Good to know there are others out there though.

Thanks for replying.

John

[Tertia3 in reply to Ovingite]

I have read an article/post somewhere recently (I expect it was on this forum) that worked out we are not quite as rare as we think we are. Wish I could remember the details!

Caroline

[Helena303 in reply to Ovingite]

We are rare in glad we are all on this site

[Norman45 in reply to Tertia3]

Yes me too. There’s a man (I know his wife from work before I retired) who lives 200 hundred yards away in the next lane and like me he has MF, is on Ruxolitinib and attends the same clinic.

[Tertia3 in reply to Norman45]

What a coincidence! Do you get together to swop notes?

[Norman45 in reply to Tertia3]

Yes. He is a few years older than me, aged 78, and his wife has been told recently he has a three year lifespan expectancy. He’s not in good physical shape and has slowed down considerably.

Staying active for as long as possible despite our problems seems to be the way of keeping going longer.

I remain as cheerful as possible even when in a down period but I am also sustained by my wonderful wife who gently cajoles (never nags!) me until I’m feeling better.

[Tertia3 in reply to Norman45]

I am sorry to hear about your friend.

I remember when I was first diagnosed I kept worrying about how it would all end, especially during the long nights. It's not nice facing your own mortality. I thoroughly agree with you that it's best to keep as active and as cheerful as possible and just get on with life you have. Having a supportive partner must be a great help!

Best Wishes,

Caroline

[Tertia3]

Dear Rachel,

I 'm not treated at the Churchill Hospital,Oxford but I went there twice last year to be assessed for the Tamarin Clinical Trial. I was very impressed with them. Unfortunately my allele burden was too low to take part in the trial. I popped into the Maggie Centre both times, as it was pouring with rain, to dry out and warm up before my appointment. They are very welcoming there aren't they? I would be very happy to meet you there next time you have an appointment. I only live an hour away by bus.

My Best Wishes to you,

Caroline (ET diagnosed Oct 17 )

[Rachelthepotter in reply to Tertia3]

Hi. Sorry not to get back to you sooner: slipped through the net. Will you be at the Oxford forum on 24 th April? See you there?

Rachel

[Tertia3 in reply to Rachelthepotter]

Hi Rachel,

I've literally just applied for a ticket to the Oxford Forum, hope there's some left! I wanted to make sure that I could get home by public transport that late at night before I applied. They have really cut back on the frequency of the 280 bus, especially at night, but I should be able to make it, even if I have to leave a little early.

Did I read somewhere that you might give a "Patient Experience" talk or did I dream it?!

Anyway, I hope to see you there.

Caroline

PS I'm off to The Churchill Hospital tomorrow for a check up after a BCC removal. I may pop into Maggie's for a cuppa!

[Rachelthepotter in reply to Tertia3]

I’m happy to give a patient experience talk, but Maz needs to confirm that thats what the organisers want. They may have had better offers.

[Tertia3 in reply to Rachelthepotter]

When I went to an MPN Forum at Birmingham a couple of years ago, I remember the "Patient Experience Talk" being one of the best bits!

[katiewalsh]

Hi Rachel, since I live in the US I can’t meet you but just wanted to say I’d like to. After reading many of your posts & others I feel like we’re all friends & a get together would be nice. Especially meeting folks from other countries! Best, Katie

[Rachelthepotter in reply to katiewalsh]

Hi Katie

What a nice reply to get! One of the things that MF tipped me into doing was getting to grips with using a forum, and quite apart from information about MPNs, there have been some amazing people on this site. I realize now that not all internet forums are as kindly and helpful as MPNVoice. For which Maz, our moderator, deserves a lot of credit, and thanks.

I remember how desolate I felt when I was told in January 2017, after the bone marrow biopsy result came back, that it wasn't ET (which had been what I'd been given as a working diagnosis in December 2016) but MF. I was going to say - I don't think I've actually met anyone with MF, but I must have.

I did go to the London meeting in Dec 2017(?) -I was especially interested in the presentation on fatigue, but that was first thing in the morning at 8.30, and I was too tired to make it into London quite so early... However, there was a groups by disease session in the afternoon, and I went to the MF one, so I must have met other people with MF there. Can't remember much about it -that was at the end of the day and , yes, by then I was too tired to take much in.... .

[Cja1956]

Sorry, Rachel. I’m in the US And I also don’t know anyone personally who has this disease. That’s why I’m so glad I found this forum. It has been a big help to hear other people’s experiences.

[tessa46]

Hi Rachel

I am being treated at the Churchill and I think its very good, I live the London side of Oxford on the edge of the Chilterns. I have ET JAK2+, diagnosed in 2016. I have been on Peg Interferon 45mcg which suited me really well but I have developed a retinal occlusion, so have been taken off this and at present going through the process of looking at alternatives. I'm sorry for the slow reply, we have a lot going on at the moment, and we are going to Australia for the month of March to visit my son who lives in Sydney, but I would be delighted to meet up when we return. I see you live in Surrey, so it may be we could meet more locally. Shall I message you with my contact details?

[Rachelthepotter in reply to tessa46]

Hi Tessa

Yes, please do message me with your contact details. Would love to meet up, and meeting somewhere other than at the Churchill could be more fun. I've lived in Sydney myself for a while, during my 20's, and it was an exciting city to be in.

All the best

Rachel

[Rachelthepotter in reply to tessa46]

And I’ve just seen that there is a forum in Oxford on 24 th April, and I’ve applied for tickets, so looks like we could meet there, if not before. Hope the Aus trip is good : v v hot at the moment.

Rachel

[tessa46]

Hi Rachel

Many thanks for this. I have also just booked for the Oxford Forum on 24 April, so yes, we can certainly meet there, I look forward to it.

Tessa

[Rachelthepotter in reply to tessa46]

Great. See you there