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…[Read more]

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

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 oth…[Read more]

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 h…[Read more]

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…[Read more]

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

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…[Read more]

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…[Read more]

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

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

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…[Read more]

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…[Read more]

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

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

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…[Read more]

Hi Susie the Leicester Royal Infirmary oncology unit now always sends copies of the Doctor’s letters, weren’t so good in the past, usually about 2 weeks after the event. As you say, a useful reference to check back on events and dates, and the consultant’s remarks.
All the best xx

Hi Peter, I would be inclined to take action tomorrow rather than wait for the consultant meeting as it is a fair while away, and things can change quickly. Also you may be able to find help with the pain, even if it’s only to lessen it to a degree, as happened to me with my back problem. Don’t worry about being a nuisance, that’s what the system…[Read more]

Hallo Nick, done it again came off this page lost a long script! Try again!
Nick, sorry to hear things haven’t improved much for you. The lack of mobility is so limiting,and constant pain drags you down mentally as well as physically as we both know. I have many of the problems that you have, tiredness and fatigue in particular. I hope things…[Read more]