[jeff605Participant]

Difficult to find information on hospital rankings I found. I attend the Leicester Royal Infirmary, and have found the oncology team there fine. There are a number of consultants and you don’t always see the same one ( I believe you can ask to see the same one, but  I have just seen whichever one I am asigned to) They have always treated me with respect, and listen to what I have to say. They have answered any questions fully, although you do have to ask for information. Certainly, in my case the treatment has worked, I am in remission without having had a SCT. You don’t say where you are based, so I don’t know if this is any help. Good luck with your search, must be horrible not to have faith in your consultants. I e

[jeff605Participant]

Hi, nice to hear from you.  Sofar I have had acknowledgment of my letter, and no decision yet. Bit irrelevant atm as I can’t drive,  as I’m not mobile enough to get to the car let alone drive it! Glad you have kept your licence,  it really is a trial not being able to drive, makes every thing difficult.  Regards, Jeff

 

[jeff605Participant]

Hi Millie12. Yes I know what you mean.  I have just reached remission after some 3 years of treatment without SCT,  how long it will last who knows!  Fingers crossed.  I did post that I almost felt under a death sentence the way the posts seemed to read. Perhaps others who have not had sct could comment or post of their stories to encourage others in our position.  Good luck Millie12, I hope all goes well for you

 

[jeff605Participant]

Hi, Andy, thanks for the information,  I will download the form and send it off, I have booked the car in to have hand controls fitted later this month, and bought a scooter lift to make things easier.  I certainly wouldn’t consider continuing to drive the car as I am and it is, the risk of hitting something or someone is far to likely to happen!  Now my granddaughter has had a liver transplant will have to get her driving for me!

Thanks again, take each day as it comes,  get up and get on with it, is my motto!  Jeff xx

[jeff605Participant]

Hi, haven’t posted for a while, decided to wait and see what would happen after I highlighted my Neuropathy to my consultant group after giving it low rating in importance until I came across this post when having a catch up session. I was concerned about the DVLA aspect. Since then it is having a much more negative effect on my abilities to drive and live – difficulty in operating and find the control pedals to an extent where I have had to stop driving even my auto car, for example. I am also having falling and unsteadiness , and really have to watch every step and vertical movement I make. At my meeting last week the very thourugh consultant came to the conclusion that I was more or less stuck with it, although booking me for some neurological tests to confirm the diagnosis not to expect a cure ! So, I am in the process of looking at hand controlled cars – atm my hands have minimal symptoms, and surrounding myself with walking aids. Now, assuming that I find a vehicle to suit, do I need to inform the DVLA? Incidently, life being governed by the infamous S-ds law, both the consultant and myself found it strange that this co-incided with excellent Myeloma results, had the magic words ” stable very good remission” in writing. Ah well, no-one said it would be fair or easy ! Interested in anyone else’s experiences with neuropathy and it’s path , wishing you all the best in our life with this so – individual cancer, Jeff

[jeff605Participant]

Hi, I have just got insured through HSBC, £62 For 8 days Malta excluding anything connected with Myeloma,  after a lot of searching.  Jeff

[jeff605Participant]

Hi Lennie, I recognise these symptoms only too well.I have been on Revlimid for some 2 years, and the lack of taste is a real downer, together with as you describe a burnt feel to the tongue. I think about what I would like to eat, sit down to it and don’t want it, usually steuggle through most of it. Thank goodness puddings aren’t affected so much!! Don’t think there is much we can do about it, to make matters worse I can’t eat strongly spiced foods! The important thing is to eat regular meals, and not skip thwm- I find lunch is the most difficult one to deal with
Good luck with the treatment, I hope it works as well for you as it has for me Jeff

[jeff605Participant]

Susie, I am in the same situation, cant get insurance while taking meds, talked to the consultant about it, if I am well enough will be able to have a drugs holiday for a month or so and should then be able to get insured. but won’t know until close to holiday so have taken a chance and paid!! Might lose it, I did try several insurers but always ended up with same answer, no go. Have you talked to your consultant? Ive bought a campervan so will be able to get away in Britain at least!! Good luck, let us know how you get on Jeff

[jeff605Participant]

Hi Susie Afraid that feeling comes to us all, I hate having to use a walking stick, but needs must!! I think we have enough to deal with,anything that makes it easier is welcome Take care Jeff xx

[jeff605Participant]

Contact MacMillan, they sorted mine out initially, there is I think some arrangements for terminal cancer patients Good luck Jeff

[jeff605Participant]

Wow Pennie, what a breath of fresh air at just the right time for me. Andie’s story is so similar to mine, except I am only 5 years down the line as against Andie’s 16, even to an emergency op resulting in an ileostomy! On the same treatment too. I am in a bit of a down just now mainly due to a painful back problem, and this post has cheered me up no end. Thanks for sharing your good news,wishing Andie continued good progress Jeff

[jeff605Participant]

Quick update :- back now a lot better,after a very difficult MRI scan no evidence of cancer or new damage which was a big relief. I decided to live with a bit of pain and reduced my morphine dosage as the heavy dose the GP recommended wiped me out, sleepy and dreamy all day, so am now seeing how it settles down, if possible will reduce it further. I am managing to take a short walk every day, hopefully will be able to extend this gradually,this is farthest have walked for 2 1/2 years! . Everything else still about the same regarding tiredness etc.Am back on chemo, stopped for a while following tummy upset. So generally on a bit of a physical “up” atm.,mentally not quite as good though. Best wishes to you all

[jeff605Participant]

Ahh, Nippy, sorry to hear about the latest news, hope it gets sorted ok. Best wishes xx

[jeff605Participant]

Nippy, chest infections seem to be the bane of chemo drugs, I’ve had several, and have even been given antibiotics to keep at home in case I start developing one! Hope sis recovers quickly, they do drag you down

[jeff605Participant]

I know a while ago someone on the forum was having great difficulty with the Leicester Royal Infirmary oncology unit getting letters passed on to him and had to demand them through – I think it was – the pals network, and had to pay a fee. It was a long time ago so not sure of the details, but you are evidently entitled to this information. Since then things have changed and I always get a copy of the Doctor’s letters about 2 weeks after the consultation. Annoying, this information is so important to us as a guideline as to what is going on,isn’t it? Hope you manage to get this sorted, I seem to remember the person above wrote to the Hospital Administrator concerning this Good Luck

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