Hi all, thought I would add my tale, like Jill, I visit my GP surgery 2 weeks before my clinic appointment, the hospital have already supplied me with the envelopes, nurse takes the blood, so 2 weeks later at the hospital appointment the detail is there ready for discussion. My GP receives a letter showing the current results and I recieve a copy…[Read more]

Hi Susie,

Definitely wishing you luck for tomorrow. I am sure you are feeling worried about what they have to say. I suppose the “but” is that it is oddly reassuring that behind the scenes the Doctors are working to keep you as well as possible.

I am sorry to hear you have been in pain, sometimes physio seems to make it worse before it gets…[Read more]

Dear Don,

Best of luck for your operation tomorrow. I am sure you are in good hands.

I look forward to hearing how you got on and also how the nurses cope with your irrepressible humour. I expect you will be like a breath of fresh air as you recover from the surgery.

Best wishes to you and your social secretary, financial controller and life…[Read more]

Hi Fiona.
I was put forward for an Allo over 2 years ago because I didn’t respond to any treatments. At the time it was regarded as a matter of urgency. A match was found and detailed blood analysis was done. Unfortunately the match wasn’t exact and I was told though the mortality rate was 20% in this case I’d probably not make it out of hospital!…[Read more]

Hi cancer kid, otherwise known as Don. What a wonderful outlook on life and death. I hope that you are considered an inspiration at the hospital, if I had to be parked up next to anyone in hospital I would choose you, a laugh a minute, bet you keep them on their toes.
Good luck.
Tony F

Hi Chrissie, funny how you get conflicting advice from all sorts of areas, I was told definitely not to drink green tea! So who is right? Wish I knew.
Still life goes on!
Regards
Tony F

Nothing more to say Don, I wish you all the best for the future.
Regards
Tony F

Hi Don,

Crumbs, what a time you have been having, hope all goes well with your keyhole surgery on Monday.  You must be feeling quite battered by everything that has been happening to you.

I too love the humour, keep positive, medical science is amazing these days.

Best wishes

Karen

Hi Steve,

My GP was great but it is for sure a waiting game as you go through all the tests.
What my GP initially said was that every answer raised another question and this may be where you are in your journey right now.

I wish you well.

( I emailed the webteam about the tradestore advert as it looks to appear on lots of posts…inappropriate…[Read more]

Hi Susie,

I don’t live in your area, but is there a support group near you? Might be how you could talk to other people using the same hospital team.

Karen

Hi All, not been on for a while and have only just stumbled on this. Very interesting! I live in Oakham, 9 miles (ish) from Melton Mowbray. We live a 2 minute walk from a plastic engineering factory. Twenty years ago I worked for 5 years (North West of England) for Nuclear Electric, catering for workers, labs etc. So I could take my pick from a…[Read more]

Hi Karen

I don’t really know if I am coping well. It is such a devastating thing to be told you have cancer. I too have the thought pop into my head every day. The Consultant told me I was lucky because I was picked up early through routine screening and he sees people who are symptomatic and with kidney damage etc and in a much worse state than…[Read more]

Hi All

I have had a blood giving day today..they took a whole armful!! I have my first appt for the Haemachromatosis on Friday so repeat of all blood tests required and  going for another scan tomorrow. Have to say I find it really hard that since March 2014 I have become this person whose life revolves around hospital appointments and…[Read more]

His kidneys must of recovered well because they don’t usually prescribe CDT if there’s any kidney problems. Velcade is the usually the drug used for people with kidney problems. Steroids can bring on diabetes.

Every day is a gift

Andy xx

Wow Fiona.
Philip has been through the mill. Like you said in your original post he’s had no respite.
It’s strange how different levels of PPs cause problems. I read online of someone who gets problems when they go above 5!
I was put forward for an Allo unfortunately the only match they found wasn’t quite good enough. Luckily I got 22 cycles out…[Read more]

Hi Fiona.
Seems as though I read something that wasn’t there. I’m sorry.
Why is the doctor pushing Philip along the Allo route isn’t an Auto SCT an option?
What was his last treatment? Was it Velcade because that in some cases works well at getting the paraproteins down but doesn’t keep them down for very long.
Which ever route Philip goes down I…[Read more]

Hi Loopyladye.
First of all welcome to the forum though I know you’d rather not need to be here.
I know what you mean about the relief of diagnosis. I had a bad back for 18 months before I was finally diagnosed and it was a relief to know I wasn’t imagining it and it had a name then came the shock as it sank in I had an incurable cancer.
I was in…[Read more]

Hi all.
I agree with all that Chrissie and Rebecca say.
Though I’m not as optimistic as Chrissie about a daily tablet to maintain our condition. My reason? It’s because myeloma isn’t a single disease or maybe that it’s not caused by a single entity. That is why we all have different journeys and react differently to different drugs. Genetics are…[Read more]