[charisma4Participant]

Hi Rhiannon,

you sound like a fantastic young man,strong of character, and a real credit to your dad. I have a hunch that your dad thinks that by not talking to you, he is protecting you.

I am 64 and have had MM since December 2012. My children are 40 and 43 years old, and I have grandchildren of your age.I went through the motions of trying to protect the people I love from the ‘ins and outs’of it all and kept my feelings well hidden.However,at some point I realised this was worrying my family more, so we talked openly about it, and supported each other through the first few scary months.

Have you told dad that you need to talk it through with him for your own sake, so that you can be of support ?

My advise (as an oldie), would be to phone him often,tell him you love him often and let your dad’s emotions unfold little by little.

As for your remark about not wanting to trouble anybody…..well, you can put your questions and feelings on this site at any time without fearing being a trouble . People on here are wonderfully supportive .
Take care,
Lesley

[charisma4Participant]

Hi Tom,
I am 11 months post sct,and my pains returned several weeks, ago and I feel very tired. I have had x-rays, and blood tests, which have found nothing untoward.Consultant’s advice is to get more rest, as it is still early days post sct. My son-in-law is an oncologist, and he told me that aches and pains are nothing unusual, and that I’m expecting too much too soon, as sct is a massive trauma to the body.
Don’t let the gremlins worm their way into your mind,just get it checked out.
Lesley

[charisma4Participant]

Done.

[charisma4Participant]

Hi Liz,

Well done on raising £230, gosh no pressure then !! I have the forum pack and have picked up on some of the tips. I think that mine will be a much smaller gathering though. I think that maybe if I hold it on a weekend, more people will be free to come along.
Thanks for the advise.
Love Lesley x

[charisma4Participant]

Hi Carol,

Good Luck on Wednesday, take a hat as you will really feel the cold when your hair has gone.Is someone going with you ?

Just keep reminding yourself that hair loss is a small price to pay. My nan had a great saying “all times pass ” and it has been my mantra over these last unpleasant few months.
My teenage grand daughters tell me I look ‘cool’ now that my hair is starting to grow again, and that i shouldn’t wear my wig anymore……..fat chance, but at least we can have a giggle about the whole situation now without shedding tears.

You go gal !!!
all the best,

Lesley

[charisma4Participant]

Hi Carol,
Hi Carol,
when I had my pre SCT chemo,in August, my hair began to come out within a few days. I was frightened to comb it even . However,it became such a nuisance ( hair in everything – washing up bowl, sandwiches, gravy !!) that I got my daughter, a hairdresser, to shave it all off. We both cried silent tears while it was being done.Oh, and when I was brave enough to look in the mirror, it was a terrible shock, having spent years with a bob and a fringe to divert attention away from my rather large nose ! But I have to say,by day two, I was beginning to like the freedom !
My hair is growing quite quickly now, although I still wear a wig as I’m not keen on the Sinead O’Connor look.

So I suppose my point is that the whole experience of hair loss hasn’t been as crippling as I imagined it would be,and my advise to you would be to shave your head now, before it leaves you with several bald patches.On the plus side, I have saved ££s on hair products !

Kind wishes ,
Lesley

[charisma4Participant]

Hi Karen,
I really have no idea what a 'pecker' is !!!! My nan used the phrase often and I presumed it meant chin, but now you've got me wondering ……it certainly wouldn't be anything rude, as my nan was very straightlaced !

Hope you are feeling brighter this week .
All the best ,
Lesley x

[charisma4Participant]

Hi Karen,

I was told that I was in remission last month, and like you, I still can't believe any of this is happening.Also Like you, I have 'fed up' days, but having MM has taught me two valuable lessons,one being just how much I am loved by so many people as I am sure you are. Number two is that since I have been attending clinic, and after a stay on a cancer ward, I have witnessed real suffering – there are so many people much worse off than myself,some without a soul in the world to care about them.

I know some days are hard and may get harder. This is a great place to let off steam when those days creep up on us.

I think we are at about the same place on the MM road, so we will both keep on fighting for all the people in our lives if not for ourselves wont't we.

Eve is a very sensible lady,who always gives great advise, so listen to her and don't spoil today by worrying about tomorrow.

Keep your pecker up .

My very best wishes,
Lesleyx

[charisma4Participant]

Hi Carol,

It took 2-3 weeks for me to feel 'normal' physically and mentally. It felt great to have a clear head again.Hope it works out the same for you.

I know it's hard, but be patient.

Lesley

[charisma4Participant]

Hi Tom,

I am in remission and I get 'niggles' almost daily, mainly lower back, ribs and hips.My consultant doesn't know why!! I take pain killers on a daily basis at the moment.
All the best,
Lesley.

[charisma4Participant]

Hi Bev,

I can feel your fear, and I remember feeling exactly the same as you, pre diagnosis.My MM was discovered through a cholestral test,which,would you believe, I had requested !!

I am 63 on the trial drug,and have been a bit sicky on it, but other than that not too bad.

Please be guided by the lovely people on this site, they are a great bunch, and will always try to give an answer to your question.Their support is immeasurable.

I am not going to say 'welcome to the club you never wanted join' yet Bev – wait til you have some definites.

My doc hadn't got a clue about MM, so be grateful that yours is on the ball.

Hang on in there.

Love, Lesley xx

[charisma4Participant]

Carol, I don't think that you are being a baby at all.All of us with MM are on a roller coaster ride, both physically and emotionally.It's really hard at the beginning, when, only a few months ago both you and I felt well and 'normal'.Here we are now being bombarded with drugs and poison, for which we have given permission! It sounds like something from a horror story doesn't it.

I hope that Thursday brings you better news,and that the pills don't make you too miserable over the next couple days.Keep fighting.
Lesley x

[charisma4Participant]

Hi Tom,

wishing you all the best for today, and the next few weeks.

Lesley.

[charisma4Participant]

Hi Carol,
Thankyou for your kind thoughts.In answer to your question, I was on on the
trial drug for 4 months, by which time my paraproteins had come down to 5. This is acceptable if on the trial drug.

How did it go at the doc's today.Hope it all went well.

best wishes, Lesley.

[charisma4Participant]

Hi Carol,

I too had trouble walking, i felt that i had no control over my legs, which at times were very painful.My daughters used to laugh at my walk…..said Monty python's ministry of funny walks(remember that tv prog ?) had nothing on me !!!! Also got the cramps. all of this went away when i stopped taking the pills.I feel really well now ,but am going into hospital for stem cell preparation on Thursday,so that's the end of my well days for a bit I expect !!.
All the best to you,
Lesley x

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