Is there anyone else in Cornwall or Devon, who has CLL and wants to form a support group?

[hazelmark]

[dinkywoman13]

Hi hazel, I am on the border of both of these counties, right on the border to be precise. I would be interested in helping you (nothing else to do these days). It will be interesting to see how many others out there would be willing to come on board. Being in the SW can be difficult, I find it hard to travel too far as i am not able to drive, but public transport does wonders, alot of the support groups are naturally in the larger cities and being in a more rural (not to say backward) part of the world can have its disadvantages.

If you want to send me a private message we can talk more

[hazelmark in reply to dinkywoman13]

How lovely to get a reply.

I am 60 and have had CLL for 7 years.

Its still at the watch and wait stage.

But will almost certainly have treatment next year.

I also do not drive, so am reliant on public transport.

Although I live in mid Cornwall, I do get about.

Every week I visit a friend at Yelverton, near Tavistock.

So maybe thats your area.

Went to a CLL meeting in Oxford last March and met lots of

people at different stages.

Anyway great to make contact with you.

Best wishes

Hazel

[dinkywoman13 in reply to hazelmark]

Sorry Hazel, sent you the other message before coming here, so some of my questions answered already.

Yelverton is only about 15 minutes from mine by car and might be a good place to start.

I too am expecting first treatment next year, not sure when but could be a soon as the spring

I have sent you a longer personal message with my email address, so maybe we could exchange phone numbers and get the ball rolling? Hopefully others in the area will also make contact

Take care

[hazelmark in reply to dinkywoman13]

Hi dinky,

My number is

Hope to hear from you soon.

Hazel

[dinkywoman13 in reply to hazelmark]

\unfortunately hazel, no number is shown, private message me and hopefully I will be able to see it and would love to have a chat

[janet61]

Cornwall Ontario?

[hazelmark]

Sorry no its Cornwall, England.

Although have been to Ontario.

Lived in Chicago for 3 years.

My son lives in New York.

Best wishes

Hazel

[Myrddin]

Have a daugter living in Cornwall so visit but probably not enough to be helpful to a group based there. Good luck getting a local group together. Walking the coast of Cornwall is on my bucket list subject to finding some energy

[Hidden]

Yep.

I'm in Mid Devon (perhaps that should read Mud Devon), not far from Crediton.

Vic

[hazelmark]

Great to hear from you.

Am in St Austell

But up for meeting in Devon.

Had CLL for 7 years.

At the wait and watch stage.

Bu probably need tratmentnext year.

Best wishes

Hazel

[Hidden]

Hi Hazell

St Ozzell, eh?

Not that far away, then.

Do you go to a haematology dept locally or travel up to the RD&E

Kind regards

Vic

[hazelmark]

Hi Vic,

I go to Treliske Hospital every 3 months.

A lady from Plymouth has contacted me about meeting up.

Are you able to chat or meet up?

What stage are you at?

Best wishes

Hazel

[Jupiter]

Hi, I am in the middle of my first course of treatment at Royal Devon and Exeter Hospital. I live in Exmouth so mid Devon would work for me e.g. Okehampton. Good idea to have a local support group. Good luck in setting it up.

[Jupiter]

Hi again. I have just set my post code on my profile which means I can see who lives nearby. It might help with deciding where to meet if other interested people felt they could do this aswell. At the moment Devon and Cornwall has only about 2 people!

[hazelmark]

Hi Jupiter,

I have just talked to a woman in Plymouth.

We are keen to set up a support group.

I do not mind traveling up from Cornwall.

Plymouth is pretty central to meet up.

I do travel up to Exeter once a month.

All the best

Hazel

[Hidden]

Hi Hazel

I'm not sure what stage I'm at - I have to drag any information out of the Haematologist. It's as though I'm trying to contravene the Official Secrets Act!

Anyway, my WCC his hovering around the 30+ mark at the moment (or it was when I last went in October) no enlarged spleen or lymph nodes, haemaglobin and platelets okayish, so I guess I'm probably at stage 1. My next appointment is in January.

Meeting up would be good, or a chat on the phone, whichever you prefer.

Exeter is a 40 minute drive away, too.

Enjoyed the sun today and walked the dogs too far - absolutely shattered this evening!

Take care.

Vic

[hazelmark in reply to Hidden]

Hi Vic,

Give me your number, if you want to chat.

My WCC is 200, all this year.

Because I am a bionic woman, no treatment so far.

Up in Exeter soon, if you want to meet up.

In Tavistock once a week.

Take care

Hazel

[Hidden in reply to hazelmark]

Hi Hazel

See PM

Vic

[Myrddin in reply to Hidden]

You should ask for your full bloods to be printed off for you so you have a full record and can feel more in control. Graph up the absolute lymphocite count over time as this is the best marker. I believe consultants are worried that we will all freek if we know the numbers but it can work the other way too.

Keep up the walking and enjoy the sun when you can - being shattered is part of the landscape - When you are too tired then try being mindfull - keep well

[geoval]

Hi All, I live in Scotland, so I would think I'm just a little outside your catchment area. I am a member of a support group here. We are the Forth Valley Haematology Support Group. We have members with a variety of blood cancers and conditions. It is great to meet up and share news, experiences etc. It is quite a social event for us all, holding quiz nights and alternative therapy evenings. Guest speakers (consultants etc) come along to chat with useful advice and reassurance. We have received great help and support, (practical and financial) from Leukaemia Care in Worcester. Perhaps you could check them out and they might be some help. Keep us posted on your progress. Good luck to you with setting it up and have a nice Christmas when it comes.

[geoval]

Forgot to mention the driving force behind setting up our group. Our 2 fantastic oncology nurses, Trisha and Margaret. We all owe them a great debt of gratitude.

[Myrddin in reply to geoval]

Good to hear you have good support - self support with help from those with medical knowledge is key to getting through Watch and Wait. Though recent developments do give us something positive to wait for. keep well

[hazelmark]

I am the Cornwall support person for CLL.

So far I have met three people in Cornwall through the

CLL association. I am definitely in favour of an online

support group. As social contact is out at the moment.