[kl_leedsParticipant]

I live in Leeds, which has a really excellent Myeloma clinic within St James Hospital. But I want to move to the south of England. I really want to be somewhere that’s close to a very good Myeloma unit. That’s the most important factor for me. I don’t mind where I end up in the South (as long as its not London).
By South I mean roughly anywhere south of Cheltenham to Ipswich.
I’m currently in remission, and a year after my STC. So I don’t need much care right now, but I want to be near a good Myeloma clinic when things change, and who knows when that might be!
Thanks for any recommendations anyone can give.
Kevin

[kh0305Moderator]

Hi Kevin,
Though I live in the south my dad is located up north so I’m not able to offer any advice regarding the best southern clinics. However, I think that you are approaching your move in a great way as when my parents moved, dad was also in remission so we hadn’t really thought about it but when he relapsed and had to go to a different hospital we noticed a dramatic difference and really missed the high standard of care at the previous location. I don’t know if being post covid had something to do with it or the larger size of the hospital vs the previous or just generally not as good but I hope you have the opposite and find an amazing centre and wish you all the best for the move xx

[kl_leedsParticipant]

Thanks for your positive words. I’m sorry your Dad had such a poor experience with his new clinic.
Kevin

[mulberryParticipant]

Hi Kevin, this is something I’ve thought quite a bit about as our retirement plan had been to move to the Dorset/Wiltshire/Somerset area. But that was prior to myeloma diagnosis at age 60. I’ve been treated at an excellent hospital (Addenbrookes, Cambridge) and am very reluctant to leave their care (despite being stable for 4 years), I definitely feel trust and a degree of attachment! Another long term & medically qualified patient told me of lack of facilities such as PET scanners in the South West which has put me off considering anywhere west of the Bristol area. Having heard of sub par experiences from a variety of myeloma patients I would now only consider being within travelling distance of one of the bigger, regional hospitals, and being treated at one. Sadly I do think it makes a difference having a named Dr or consultant who works with lots of myeloma patients. This is a rare disease with fast moving scientific progress being made, so I want my Dr to be up to speed with myeloma.
I suspect that all the “transplant” hospitals offer a good, consistent service to their myeloma patients. But if Cambridge is far enough south, I’d recommend it!

[jenningskmParticipant]

Hello,

Can you choose where you go for treatment, or can you only go in your area, I thought I remember seeing something about patient choice x

[kl_leedsParticipant]

As I’m planning to move to a new area I’m assuming my care will transfer to the nearest relevant hospital. But your question makes me realise it’s only an assumption. So I’ll have to ask my team if it’s actually true!

[caroParticipant]

I hope that this reply is not too late to be of use to you. But I want to tell you what wonderful treatment I get from the haematology team at Royal United Hospital in Bath. From initial diagnosis (dodgy time with my GP, as I think it is with lots of myeloma patients, but great once I got to Bath), via chemo, stem cell transplant and now lenalidomide.
I cannot praise them highly enough.
I live in mid Wiltshire, and had the option to go to Swindon, Salisbury or Bath.

[kl_leedsParticipant]

Thanks Caro, I’m still thinking about where I might move to so it’s very helpful to learn that Bath is so good. How’s the maintenance regime going? The clinical side is good in Leeds but the admin is pretty dire so things like changing appointments are fraught with difficulty.

[caroParticipant]

I am keeping very well thank you, over two years on lenalidomide now. Awful diarrhoea (you really want to know all this don’t you), which is a known side effect, caused by lenalidomide blocking bile acid reabsorption. RUH at Bath immediately added in cholestyramine sachets to my treatment, these absorb the bile acid and have really helped. I tell you this because there is another thread on here from someone who was waiting and having investigations between gastroenterology and haematology about it being prescribed. Apart from that, I have had no problems.
I would like to collect my prescription (as I don’t feel I need a delivery), but this has proved a problem, the ‘system’ is geared up for deliveries, so I have had to give in gracefully and have them delivered. This is the only admin/communication problem I have encountered.
A friend who is a retired pathologist told me that I was wise to have chosen Bath. Salisbury would have had to send me to Southampton for some things, and Swindon would have worked with Oxford. So great that Bath can do everything.

[kl_leedsParticipant]

That’s great to learn. I haven’t had the diarrhoea side effect, just the horrible fatigue. Anyway Bath sounds very impressive. Thanks again,

[chawlamedicosParticipant]

That’s great to learn. I haven’t had the diarrhoea side effect, just the horrible fatigue. Anyway Bath sounds very impressive. Thanks again, VidMate https://vidmate.click https://myfiosgateway.win/

[spk2021Participant]

Sorry, this is probably too late but Royal Bournemouth Hospital is the place to go. I am under excellent care there and trusting 100% that the care I am receiving is the best takes one load off my mind.

[kl_leedsParticipant]

Thanks, that’s very helpful and not too late either.

[spk2021Participant]

Hi

Happy to give you more info if you have any questions 🙂

S

[fairlifeproteinshakes123Participant]

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