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.
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)
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 
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.
See my previous post! Only allowed to add 9 specific names!
Hi @ChrissyD thanks for the reminder, I have it on my calendar and will be joining it.
Thanks @Lyndam . See you there.
@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?
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?
Hi @ChrissyD thank you I have registered thank you. X
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!
@Hellodolly, just a quick message to say I’ve passed this post on to the Blood Cancer UK nurses, in case they can offer you some specific advice.
I hope he’s doing okay, how is he settling in with the new medication now?
Warmest wishes,
Ceri - Blood Cancer UK Support Services
Dear @Hellodolly,
I am sorry to read how poorly your husband is feeling. I hope that he starts to feel a little better on the new medication. Has he started this now?
With regards to the stem cell transplant, there is quite of lot of preparations required, for example they would need to do a donor search (They may have started this process?), he would need appointments to discuss the Stem cell transplant and also need appropriate organ tests to ensure he is fit enough. Is it possible he might engage with some of these pre-discussions whilst knowing the ball is still very much in his court? He will need a lot of this information to be able to make an informed consent.
We would be happy to talk some of this stuff through with you if helpful, our number is 0808 2080 888.
Best Wishes,
Heidi J (Support Services Nurse)
Hi @Pierre
Sorry. I saw you trying to get into the Leukaemia Care Chronic myelomonocytic leukaemia ('Chronic myelomonocytic leukaemia ('CMML')') meeting today. They have a new policy on their meetings and will not admit anybody if they are over 10 minutes late! So I wasn’t allowed to let you in. I’m so sorry you missed it. 
Hello @Heidi-J-BloodCancerUK thank you for your message I would appreciate a conversation about any further tests that might be needed.
He’s not started the new medication yet. Had a bone density scan yesterday and I think that they have asked for another test? He’s been matched up with a donor two years ago shortly after being diagnosed with Chronic myelomonocytic leukaemia ('CMML'). But he wasn’t sold the idea of a transplant well, and only focused on the negatives that he was told. I appreciate that doctors have to inform patients about what could go wrong and how the pre-procedure process can be nasty but for some people it just scares them off
As I said if he leaves it until he gets very ill he might be too ill. I don’t want anyone to be that sick. I doubt that anyone sales through a transplant but he hasn’t ever had the experience someone in his life dying from a sickness so can’t imagine what that’s like for anyone involved, everyone he knew who died he either didn’t see them get ill or they died suddenly, so he can’t imagine how bad he could get.
Thanks again.
@ChrissyD , @Erica , @Lyndam sisi, and all fellow patients. Just had my final ENT appointment. Seems it has settled down nicely. A couple of scars and that’s it. Read a letter from my haematologist to my G.P. commenting on my long and unpleasant experience at the hospital! So many people telling me to sue the hospital for this throat injury. If the damage was permanent well I may have had serious thoughts about this. But at age 76 and suffering with blood cancer and my injury repaired successfully I just couldn’t put up with the stress of it all. Latest blood test showed my levels getting back to pre hospital stay levels. As for my arthritic knee it has never improved and in fact has deteriorated to the level than I can no longer use my exercise bike! My left knee has also deteriorated. Sitting down and standing up is absolute torture and getting in and out of my car is almost impossible. Once I am standing I can walk with a stick reasonably well so that’s ok. I have no intention of having any treatment again or visiting the GP practice. Had a rather laughable encounter with the practice receptionist a couple of weeks ago, I rang to try and arrange a appointment. The receptionist said we now have a new way of dealing with appointments. They send a online form which you fill and return. I received a almost instant response, thanking me for using the new system! Unfortunately it went on to say no appointments available so ring 111 and they will arrange appointment at the urgent care centre or go to A.E!!. New system BUT exactly the same result! Never mind. Wish I could return to the 1950s were you always managed to see a doctor.
Best wishes to all Unclejack.
I
If it counts for anything I agree with you @Unclejack . Although I know what you have gone through with your time in hospital and your catalogue of events and very luckily they have healed now and you have documented the events I am all for minimising the stress in my life, I have enough going on in every day life, honestly.
In the 1950’s I expect you would have seen your same family doctor and they would have come to see you at a time of your convenience, or they did in Dr Finlay’s Casebook!!!
Look after yourself and take lots of care all of you.
Hi @Unclejack @Erica @Sisi @Lyndam
So glad to hear that your throat has healed well @Unclejack . I agree it would probably be too stressful to start any legal action against the hospital. I get regular official Dept of Health mailings about UK NHS complaints and it seems to me that complaints are upheld very rarely indeed. You can do without starting a battle that you’re unlikely to win .
But so sorry to hear about your continuing troubles with your arthritic knees and the pain and immobility it is causing you. I sympathise as I’ve had many weeks of dodgy and painful feet - ironically after starting an NHS brisk walking programme! Have registered with local NHSpodiatry service but after 3 weeks of hearing nothing, I apparently now have to ring them to jog their memories!
Don’t get me started on the state of GP services. The options for getting an appointment here are:
All of the above require you to repeatedly state your name , address and date of birth until you’re nearly going mad!
As you say, a far cry from the old days when you’d just turn up to the doctor’s surgery on the day and wait to be seen! 
In the light of this, I recently listened to a Dr Richard Coker on a podcast talking about his latest book ( Timor Mortis) and saying how well GPs know their patients so that their doctor would be certain and would have discussed palliative care and their wishes for assisted dying! Is this man living in the real world? Whenever I do get an appointment, it is NEVER with the same GP, sometimes not even a GP but a Physician Associate, and I can guarantee none of them know me as a person and what my wishes for my end of life care might be!
Sorry. Bit of a rant! But I do wish these people were aware of what primary care is like nowadays in many areas.
@chrissy d and Erica and all. Thanks very much for your support. One incident at the hospital I have not mentioned only to my wife was when a young nurse shouted abuse at me when she overheard a news programme I was listening to on my mobile phone. You should not be listening to that channel she shouted it’s a hate channel. I was furious. But I managed not to respond because I genuinely feared for my safety as she was administering a lot of the medication I had been prescribed. Seems that some in our NHS are extreme in their views. But to abuse patients suffering with cancer a lacerated throat and a unsuccessful knee procedure is wrong. Never in my life have I been spoken to like that for listening to a news bulletin! Never thought a nurse would show so much aggression to a genuinely ill elderly patient for listening to a news bulletin. Strange times we seem to be living through. Once again thanks for the great support. Best wishes Unclejack.
@Unclejack @Erica @ChrissyD @Lyndam @Logsie and anyone else I may have missed off!
Hello all! Just been catching up with messages. Sorry for radio silence. Good to hear your ENT appt went well @Unclejack but sorry to hear your knee is still troubling you. And yes, don’t get me started on trying to make a GP appt / online triage form @chrissyD a nightmare with our surgery!
It’s been busy with us, my husband had his special endoscopy about 5 weeks ago. If you remember they were trying to identify why his liver enzymes were elevated from last October! Anyhow, nothing alarming has shown up, just inflammation, in his bile duct, so they just want to regularly monitor him every 3 months to ensure nothing has changed. He’s got routine Heamotology appt in a couple of weeks & then due a tel catch up with Dan Wiseman in September. He’s been feeling well, so much so, that we’ve just returned from 10 days in the south of France! 
It was a much needed holiday & was lovely to swim in the sea & spend time with our son 
We had to cancel twice last year because of my husbands health, so it was such a tonic to be able to go. Feel very fortunate Much love to you all 