[susan123Participant]

Hi Nicki,
Great to here all is ok, I am now 3 years and 2 months post transplant and going well. I was advised to drink green tea by an indian lady in my local shop, I have a cup of green tea 3 times per day, let's hope it works eh? it does take some getting used to though, even better with a bit of honey.

onwards and upwards (as tom say's)

Love Sue xx

[susan123Participant]

Hi Mari,
Thank you for replying and sending condolences, I did not put a notification on this site as I felt it was not my place. However, I did tell all Sharons friends on the 'under 50's site'.

Like Penny, Sharon was so brave and battled so hard to stay with her husband and 2 young children, and I am so proud to have called Penny and Sharon my friends. I have seen Sharons husband and he is trying hard to go forward at Sharon's request.

I am also a sufferer and I have found all these lives lost so difficult, but they would want us all to stay positive and go forward in their memory.

Love to all

Susan Spruce xx

[susan123Participant]

This is very sad news, having recently lost my friend Sharon Grainger to this awful disease, once again I have found this really upsetting.

Rip Penny, an inspiration to us all, far too young to die.

Love Susan Spruce x

[susan123Participant]

Hi Gillian,

I am 3 years post sct and still in remission, I have also had problems with my stomach eg. I can't have chocolate, cream or ice cream or the next morning I know about it, I have the runs and stomach pains.

I have recently had an colonoscopy (not nice !) ultrasound, ct scan, barium meal and an endoscopy. 3 months ago my consultant said he would let me if they find anything and I hadn't heard anything until this morning when I have had my appointment come through for 5th June to discuss the findings. I am pretty confident all is ok as it will be 3 months by then and I would have heard before now.When I had my endoscopy I was told my duodenum was inflamed and they also took a biopsy. I was also told to take Lansoprozole 30mg once a day , which seemed to aggravate the condition.

I will let you know the results.

Love Sue xx

[susan123Participant]

Hi
I also wish Bridget all the very best with her recovery,take care bridget and keep strong,

Love Sue xx

[susan123Participant]

Dear Michelle,

I am so sorry to hear about the loss of your husband and childrens father Phil, hang on to the good times and they will see you through,

love and thoughts

Sue xx

[susan123Participant]

Hi Bridget,

I feel so frustrated for you, you are a true inspiration to all of us. I am hoping and praying for you in the hope they find some other treatment, stay strong, as I know you will !!
Love Sue

[susan123Participant]

Hi All,

I drink about 2.5 litres of water per day and have done for the last four years since diagnosis. I use a water filter jug and a 2 litre plastic bottle, and drink it throughout the day. I also find that in the winter it is really difficult to drink water so I don't put it in the fridge as it goes down much easier when it not too cold. In the summer I find it easier to drink the water when it has been in the fridge, I hope this helps – oh and yes I drink guinness too !!!( in moderation of course )

Love sue xx

[susan123Participant]

Wishing you all a lovely xmas and a very happy and healthy new year.

Love Sue xx

[susan123Participant]

Hi Tom,
What lovely pics and I love your xmas tree. I tend to try to enjoy xmas as much as I can now, and put Myeloma on hold for a few days. My lovely hubbie is very 'bahh humbug' but I soon change that with a few special treats and my xmas stockings (nudge, nudge, wink wink !!) I must admit I think the run up to xmas is hard work, but all worth it on the day.

No Snow in Wolverhampton either !!

Love Sue xx

[susan123Participant]

Hi onlyme,

I had my sct 2.5 years ago and I am still in remission at this moment. I will try to list a few tips for you,

1. Sucking ice cubes whilst having high dose therapy before receiving stem cells back can prevent an event of painful mouth ulcers later, also use the mouthwash povided.

2. Good hygiene is very important, so try to shower daily and keep hands clean, to stop infections, maybe using flip flops in the shower to prevent picking up infections on the feet.

3. Let the nurses know as soon as you feel any sickness as they have lots of different anti sickness drugs, don't suffer in silence !!!

4. Take in lots of things to do , eg magazines, crosswords, books etc.and also lots of pj's or nightdresses as she will need them.

5. Always listen to your body, when you are tired rest, and don't be worried about telling family and friends not to visit if you don't feel like talking.

6. If her hair starts to fall out, don't be afraid to ask the nurses to shave it all off , as it is very distressing to keep seeing your hair on the pillow as it starts to fall out.

I hope these things help, and I am sure other people will help with other tips, I wish your mother all the very best with her sct, it will be all be worth it to feel reasonably normal once again.

Take care,

Sue xx

[susan123Participant]

Hi Mike,

Great idea about Maureen Lipman, I do think it needs to be someone high profile to get the word across, another one would be Sir Ian Botham, he does a lot for Leukaemia and blood cancers,

Love Sue xx

[susan123Participant]

Hi Carol,

Always good to hear some inspiring news, thanks

love sue xx

[susan123Participant]

God bless you Gaye, rest in peace now, you were a very inspirational and brave lady, God only takes the best.

Love Sue xx

[susan123Participant]

Hi Bridget,

Yes I am still in remission and thanks for asking, long may it last !!, it's been 2.5 years since my sct and at my last 2 monthly meeting with my consultant (2 weeks ago) , my paraproteins were still 3, and he said the myeloma was stable.

I hate this illness it's like constantly being under threat of having your future plans and happiness taken away at any time, but we have to carry on as that's what we have to do, never give up.

wishing you all the best
Love Sue xx

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