Recent diagnosis CMML

[DuncanB]

Hi @CathyP

Good to hear you’re traveling.

I shared the following about a month ago about Travel Insurance

Just in case it’s helpful to others, Which? Magazine have just published their latest list of the Top Scoring Best Buy Travel Policies.

Insurers on Medical Specialists list are

Saga Plus and Standard
AllClear Platinum, Gold Plus and Gold
Insurewith Platinum
Just Travel Cover Infinity Gold
InsureandGo Black and Gold

Saga only covers over 50.

[Emma_BloodCancerUK]

@CathyP

Hi everyone, sorry I’ve lost track a bit on the forum as haven’t visited for so long and was trying to work out how to start a new topic and brain not working today. Just wanted to ask you all about travel insurance. We go to France several times a year and I also have a trip to Greece planned for next year (health permitting obviously). Have had a quote from Staysure but I read on here somewhere that Blood Cancer UK have some sort of partnership with them, is this still the case? Have any of you used Staysure? Thanks and I hope you are all bobbing along as well as you can be. I am still in the throes of the autoimmune reaction I have had to the disease (at least that is what the doctors are telling me they think is causing it) so rampant skin and scalp psoriasis now as well as terrible joint pain all over. On my third trial of drugs that don’t work. I think they will try biologics next. Have gone from resigning myself to doing nothing to having a different mindset and thinking bugger it I may as well dose up with the painkillers and do my best to to get out there and do as much normal as I can, hence the question about the travel insurance in case this positive attitude backfires on me!

Hello @CathyP

Thank your for your post.

We are so sorry to read about your joint pain, psoriasis and ongoing trial of treatments, this all sounds incredibly challenging, and we hope your team are able to find something that gives you some relief soon. Do keep them updated on how your symptoms are affecting you day to day, especially if things are changing or becoming harder to manage. They will aim to support you as best they can.

It’s great to hear you’re hoping to France and Greece and hope you have a lovely time.

In terms of travel insurance, Blood Cancer UK is no longer partnered with Staysure, but our colleagues at Maggie’s have a really useful page about finding travel insurance/ providers they would recommend which you may find helpful. This can be found on their page - Travel insurance and cancer | Maggie’s. It’s also worth knowing that your hospital team may be able to provide a cover letter or summary of your medical condition if an insurer requests further information.

Hopefully, other forum members will be able to share their recent experiences of insurers too. We also have lots of threads available with people discussing this - Search results for ‘travel insurance’ - Blood Cancer UK Online Community Forum.

On our forum home page, you should be able to see a little red box that states ‘start a new conversation’ above the list of posts on the right which allows you to start a new post if you would still like to do this.

Do take care & keep us updated,

Warm wishes,

Emma (support services nurse)

[CathyP]

Thank you so much Emma for taking the time to write such a long and informative message. And to you Duncan for your info. I certainly feel much more confident now looking at other companies apart from Staysure with this increased knowledge and hopefully as a result of this I can make a more informed choice as to which travel insurance product to go for

[ChrissyD]

Hi @lyndam @CathyP @Unclejack @Pierre @Rick @Gaynor @Hellodolly @Hughbie @Bonny16

just reminding everyone I can think of about the Chronic myelomonocytic leukaemia ('Chronic myelomonocytic leukaemia ('CMML')') ONLINE support meeting next Thursday 30th 2pm. Not sure if there is a speaker arranged but it’s good to meet up and offer mutual experience and support anyway.

It would be lovely to see you there.

If you’ve already registered you should have received a reminder yesterday from something called Salepager? If you haven’t registered, use the link I’ve attached to register for this and the November meeting.

Chronic Myelomonocytic Leukaemia Support Group | Leukaemia Care ...

[ChrissyD]

@Logsie

See my previous post! Only allowed to add 9 specific names!

[Lyndam]

Hi @ChrissyD thanks for the reminder, I have it on my calendar and will be joining it.

[ChrissyD]

Thanks @Lyndam . See you there.

[Hughbie]

@ChrissyD I think i registered. Its in my diary but now I can’t make it so I’m hoping there’s either a recording or presentation I can look at after?

[ChrissyD]

Hi @Hughbie

So sorry you can’t make it. Sadly, it’s only the speaker meetings that are recorded -for confidentiality reasons - but maybe Nick York from Leukaemia Care will send out a summary of if not I’ll post one on here. Hope that helps?

[Bonny16]

Hi @ChrissyD thank you I have registered thank you. X

[Hellodolly]

Hi all, still waiting to see the haematologist but things have been changing rapidly! He’s now officially diagnosed with systemic mastocytosis, and they’re about to change his treatment to Avapritinib tablets, he told me that he is getting dizzy in the morning and that he’s feeling weaker like his batteries are depleting (I know that feeling very well) and because of the new diagnosis he’s been prescribed an EpiPen.

I don’t know what to do with him! They’ve not taken a stem cell transplant off the table and obviously want him to have this. I don’t see him thinking about it unless he gets a lot sicker but if he waits too long they might not be able to do it. It’s a bit of an oxymoron as you have to be well enough to have it done but sick enough to need it!

I suppose I’ll just have to wait and see how he gets on with the new medication and if he gets sicker then read him the riot act. I know that it’s ultimately his decision but I don’t think he really understands what he’s got. He’s not able to deal with everyday issues from ordering stuff to paying bills so making such a big decision is outside his mental capacity but I can’t do it for him!