Hi Phil, Fabulous news – well done you – great to hear news like this as it gives me a real boost. Even tho I know it’s all very individual but by just highlighting this individuality means that none of us can be ruled out for a long remission.Hope you are getting the bubbly out tonight and celebrating your bodys achievement of outwitting those…[Read more]

Hi Ivan, At what gfr was you prior to transplant please – was it a known big risk with your kidneys to transplant? I have low kidney function and they were not affected by the transplant but always like to gain information in the event of future treatment. Thanks

Rebecca

Hi, sorry to hear your remission has not been very long and am glad you have good coping strategies in place. I totally agree with regards yoga and meditation. I used to do yoga as a calming influence during treatment (now abandoned in remission) and went to some Buddhist teachings which included mindfulness and I guess I learnt that I am in…[Read more]

Hi Katy, Whilst you don’t lose your hair on many of the treatments it does get in very bad condition – mine was/is always shoulder length – if I had my time over (which I will at some point) I would opt for a short haircut. Regards wigs – I chose not to tell anyone about my cancer and spent a fortune on very natural wigs so no-one would know -…[Read more]

Hi Sandra, Sorry to hear your news but even on the rise it could be a watch and wait until treatment actually needs to start so can’t think of anything better to set you up for the ride ahead than a good old jaunt with friends before travelling abroad becomes a no-no. Go for it

Rebecca x

Hi Katy, At 62 your mum will no doubt do the treatment including an SCT. She is lucky in that she will be treated early and therefore her body is in a much stronger position for the task ahead. I was diagnosed at 51 and am 2 years at xmas post SCT and no treatment (for now). Please ensure you stop supplements when treatment commences as some can…[Read more]

Hi you too, well done and now for the easy/enjoyable bit of recovery. Have read your posts with interest (mine was 2 years ago this xmas) – for some reason this site allows my sign in about once in 50 attempts so I am a bit late in the “encouragement” dept. Would add that in 3 months suspect you will be totally back to full fitness/life. Take…[Read more]

Thanks for that, yes it is less sensitive to my translocations but will throw my hat in the ring as nothing to lose. Am still ok but can’t shake off a cold I’ve had for 3 weeks and played 3 1/2 hrs tennis today but been told by the coach that I’ve got to stop playing now until next week and recover as my tiredness is affecting my performance. All…[Read more]

Hi all, almost 2 years post SCT and I have not yet taken circumin but would like to start now. Can I anyone tell me exactly the type they get and the website to save me looking at all different stuff etc to come to the same conclusion please?
Christine, I applaud your regime and whilst I used to juice etc I have gradually done nothing to assist…[Read more]

Hi all, Jacquie my apologies for emitting my condolenses in my last post – I am truly sorry for your loss.
Karen, I had to go to another hospital who was prepared to risk my kidneys as I was turned down by the one that would be usual for me to attend. the risk of infection wiping out my kidneys was their main concern I think. Whilst my gut told…[Read more]

hi Laura, I obviously do not know you/husband personally but I think perhaps he would have had the SCT even if risks were explained more fully. I know at that time you are carried through the whole process with big “hope” that you will come through it and that fuels the decision. I went against my husband in almost gung ho fashion because I felt…[Read more]

Hi Laura, so sorry to hear your news. I think SCT is considered as just a harsher treatment and with that greater risks. I wasn’t given the talk of what could go wrong and how the chemo can seriously damage heart and lungs (but knew about it) but, with kidney damage, I was told the chances of my dying was 20% – increased from the usual less than…[Read more]

Hi Andy

I’m so pleased you are improving so well. Give the memories time I’m sure they will fade. Good luck with the intensive physio.

Best wishes

Susie

I find it hard to believe that medical professionals and patient reps (who I understand are on the deciding panel) took Rev & Pom off the list. They are proven drugs with lower side effects than the older CHEAPER drugs. I believe that because they are so effective we would live longer and therefore cost greater amount of money in the long run. To…[Read more]

It is brilliant M UK are fighting our corner. Don’t know what we would do without them. However, I doubt this government will take any notice at all so I won’t hold my breath.

Hi Andy, Great to hear you have survived! I echo Finn’s sentiments as I too and am sure loads of people were checking daily to hear of any snippet of your progress – you’re far too inspirational to lose – and a real stalwart of this forum. Take care

Rebecca

Hi Kerry, Sorry to hear about your predicament. Obviously your mum is not at a “crucial” stage re symptoms so think the time element you are experiencing is pretty normal. They may wait for the full body scan before bringing you in for a discussion so they have the full picture. Bloods normally take a week, I was diagnosed with kidney failure so…[Read more]

Hi Scott, thanks for that I will add it to my collection. When I was first diagnosed and read everything I could about cancer/management/mind stuff etc I started collecting quotes and now have a little book full of them and whilst, in remission, the urge is not there to constantly refer to them I certainly did throughout all treatment and it…[Read more]

Hi Jules, Obviously it depends how your husband is but after the transplant and say the first week if all goes well he should be fine on his own. I had mine nearly 2 years ago (at 52yrs)and my husband had to work – I became ill with one thing and another but he made me breakfast and I could potter during the day and he made the dinner. If I hadn’t…[Read more]

Hello Helen

Gosh you have been through it. I know what you mean about getting really uptight before clinic/treatment appointments. It almost makes me ill, yet the clinicians etc never appear to appreciate how we feel do they. I’ve also got quite uptight since it was announced by the CDF that they are dropping 2 of our drugs.

My PP’s were 14 on…[Read more]