[katybParticipant]

Thank’s Rebecca, great idea to purchase a wig and match to your own hair, I know Mum will  want to go down this route. We have already contacted a place in London and she’s going to have a telephone consultation with them first

I am a firm believer in strong mind, strong body. My husband was dealt a pretty rotten dealing when it comes to health, he spent 1 year in hospital, had 2% chance of survival. He his now back to full health and happily back on the golf course!

All your quotes will be printed off and placed in a box titled ” When I’m having a cr** day!”

Thank you. Have a great day tomorrow.

[katybParticipant]

Thank you Annlynn. Mum had read that it’s common you loose your hair during SCT. So we’ll Go shopping, drink bubbles, try wigs on and laugh..

So, any good recommendations on wig shops, prefer London or Birmingham.

[katybParticipant]

Hi Rebecca,

Congratulations on your 2 years post SCT, long long may it continue.

We had heard about stopping supplements during treatment,and definitely will. Desperate to keep mum’s immune system fighting fit after treatment, due to her venerability to infection

I love your outlook, ‘don’t let MM take over your life & thoughts’

‘You cannot always control what happens to you but you can control what happens in you’ This will become our new mantra, thank you.

I had read that you get high’s & lows during treatment. That one of the drugs keeps you awake during the night. I guess we will hear all about it on the 6/1.

We’re good at treats so will ensure Mum works out her high days quickly. We met with a professor in London for a second opinion he had said 1% loose their hair during treatment, you mentioned, when your hair grew back? did you loose your hair during treatment? Again you adopted such a positive outlook, ‘my hair did not control my emotions., good for you.. besides Mum always wanted long blonde hair…. if it happens maybe we’ll get her a platinum blonde wig!

Have a great Christmas Rebecca and may 2016 bring you another year treatment free.

 

Hi Jan,

Sorry that you’re back on the treatment rollercoaster, but great news that you managed five years in remission, may it be 10 years next time…

Thank you for your practical advice, well received, will begin purchasing tupperware for my meals on wheels deliveries. Annoyingly I live 3 hours from Mum so will bulk cook..

I think she now has had the flu jab as she had pnemonia a couple of years ago. Like you said listen to your body, sleep when you need to sleep.

Have a great Christmas, and roll on 2016 when you’re treatment free and in full remission.

[katybParticipant]

Thank you so much for both replying.  Hearing it’s doable.. Helps.

Also that you’re both in remission, long may it continue. Great news on the Gym, a consultant that we saw in London said keeping active ( when able)  and drinking water was the best advise he could give

Mum may have more specific fears and concerns that you’re able to help with.

I promise I’m letting her eat too.. and not only blueberries.. what ever she wants. Actually my parents have just come back from a cruise ( some well earned rest before treatment) I’m sure she’s indulged lots, and rightly so!

Have a great Christmas 🎅

[katybParticipant]

Hi Mavis,

Thank you for your reply, I am so pleased to of found this site and although Mum isn’t on here yet i’m feeding back all positive stories, I will encourage her to post herself when the time is right for her.

Mum’s next appointment is 23rd March, current levels 25.7 I have everything crossed they haven’t raised to 30 and they want to begin treatment as my parents are due to fly to Australia & NZ ( once in a lifetime trip)

When you say on 70 is that your PP levels? do you take tumeric ( also known as cucurmin) I have read some great results ( even on the cancer research site) so it must’ve been trialled, if you haven’t just Google turmeric myloma, Mum is taken it in tablet form the highest strength x 3 a day

 

Thank you for your positive reply and keep well. Katie x

[katybParticipant]

* love of life! not love life, sorry….

[katybParticipant]

Thank you Carol, great news and so so lovely to hear about all your upcoming travels. my parents are due to go to Australia & NZ for 6 weeks in April, her next blood count is 2 weeks before so keeping everything crossed that her levels haven’t increased and she can jet off..

Can I ask what your para-protein levels were at when you started treatment?

My mum is amazing and remaining very positive, she’s taking lots of Tumeric as we read that Tumeric had great results, we have read and heard great things about it ( also known as cucumin)

Thank you Keith, on reading both your experiences what I hear loud & clear is a positive outlook & a love life is key, my mum has of both these.

Thank you.

[katybParticipant]

It really does help, thank you so much, I forwarded your replies on to my mum, dad & brother, we’re all so appreciative of the time taken to share your story, thank you.

It wasn’t the back ache that brought Mum to her diagnosis, it was detected during a celiac blood test, the were no symptoms ( again, trying to take the positives from this)

Mum’s back has been hurting for the past week, everything crossed that it’s muscular, she’s due to have an MRI scan next week.

How was your recovery after the transplant?

Many thanks, enjoy your wknd, I’ll leave you in peace….

 

[katybParticipant]

Keith,

I cannot thank you enough for your terrifically detailed positive response, thank you, it means so much.

You’re right, at this stage all i am wanting to do is make it go away for my Mum, so thinking right, transplant, royal marsden, gareth morgan ( who i found on the computer, but has since taken a post in Arkansas!)

But yes, I need to slow down, and take the positives. after you had completed the chemo did they offer you the transplant or is this something you requested? was this done privately at the Marsden?

when you say you went in to full remission was this from the drugs? and then you had the transplant, please forgive my ignorance.

Currently Mum has a dreadful back pain, we are hoping that its muscular and not a symptom of the meyloma, they are going to give mum an MRI, keeping everything crossed.

I am so delighted to hear you are living life to the full and you have come out of this with a positive outlook on life.

Thank you

Katie

 

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