[CarolsymonsParticipant]

Thanks Lynne

I am sitting waiting nervously every day for my next appointments at Hammersmith Hospital, London. I am also anticipating transplant in January.

I discovered a website last night “Anna Bandana” that has lots of different scarves, hats etc for chemo patients, with very reasonable prices I thought, so I have ordered some. When I was at Ealing Hospital, they ordered me a wig, but I feel so self conscious when I put it on, maybe scarves are the answer. If my appointments don’t come through this week I plan on returning to work next Monday (high school in Southall west London) but am anxious about wearing any head gear. I have told some of the students I deal with (I am a special needs co-ordinator) that I have cancer, but when I returned to work in November, my appearance hadn’t changed. Maybe I just won’t go back to work and hope things move quickly towards transplant. But…..I will be on half pay if I don’t return. Decisions, decisions, decisions!
Carol

[CarolsymonsParticipant]

Thanks Michelle and Lesley. I am at the point of being totally fed up sleeping with hair all over my pillow and as you say Lesley, everywhere else and I haven’t even got to the SCT process yet. I am also worried about my rather large nose! But after the holiday on Wednesday I am going to see if my hairdresser will shave it all off. That’s if I can make her understand what I want as she is Lithuanian with very little English! Maybe I had better take a photo of a bald head! I couldn’t go out now without a hat or wig anyway…my hair looks disgusting!

Carol

[CarolsymonsParticipant]

Thanks Chris, Tony, Vicki,

Thanks for your positive rsponses.

I have just turned 64 and apart from myeloma am/was healthy. All I want is to feel “normal” again and to be drug free. It seems that the SCT is the only way to achieve this. I need to stop reading the U.S. myeloma information where some of the doctors are saying that a SCT isn’t necessary with the newer dugs. But I HATED taking the CTD! I do not want to be on drugs for the rest of my life however long or short that may be!

So as Tom would tell me it is “onwards and upwards” to the SCT and whatever happens….happens!

Carol

[CarolsymonsParticipant]

Hi Gill

I think Xmas is a difficult time for many, even if, like me they have not suffered a loss like yours. I have my husband here in London, but the rest of my family are in Australia and I have been very teary, feeling sorry for myself as I view their posts on Facebook. Usually at Xmas time we escape from this grey, dreary city and go on a holiday somewhere (Caribbean cruise was a good year) but this year thanks to this bloody disease, we are stuck in London with me confined to the unit for some of the time, due to the high dose chemo for the stem cell collection.

I can’t imagine how sad and lonely you must feel without your Stephen. It was lovely you had the kids visiting but as you say the sadness stays.

I know you wanted to be alone for Xmas day, but maybe now in the days ahead you need to reach out to friends, even if it is an effort. Of course this weather doesn’t help to lift moods
either! Stephen would want you to remember the good times; so visualise him eating all of those mince pies and smile at those memories!

Carol

[CarolsymonsParticipant]

So to all of you experienced patients….a question. Was the SCT worth doing? I am running out of time to back out now, but I am so scared that I will endure the transplant but not get much time in remission. Of course my decision making is made more difficult by the fact that after only 3 weeks off CTD my paraprotein returned and lambda light chains rose. To SCT or not to SCT ……that is the question.

Carol

[CarolsymonsParticipant]

Hi all

Stem cells collected today..first attempt..4 hours…I am pleased. Still no date for transplant.

Carol

[CarolsymonsParticipant]

Thanks Tom you are a treasure! Always supportive.

Carol

[CarolsymonsParticipant]

I don’t think they have found a strong genetic link, (although my dad died from leukaemia so I do wonder) but i do know of an Australian man and his mum who were diagnosed the same month!

Ask to have your blood tested so that you can remove that worry from your life and concentrate on your dad.

Carol

[CarolsymonsParticipant]

Hi Frances

I have met a 69 year old man who has just had his second transplant (he had 8 year’s remission from the first) so if you are healthy otherwise and feel you want a transplant i would recommend you get a second opinion. Is your haematologist a myeloma specialist?

Carol

[CarolsymonsParticipant]

Hey 70 is not that old any more…i am 64! A strong immune system is a help in fighting this disease according to recent Australian research. I believe that the less antibiotics etc you have had in the past should help. A lot of the information on the Internet is out of date and it seems that some (but not all of course) people live many years in remission with the new drugs. Unfortunately I was only 3 weeks off tne initial drugs when my paraprotein and lambda light chains started to rise. Read what is on this website and the Myeloma Beacon an American site.

Carol

[CarolsymonsParticipant]

Hi

I agree it is an awful shock to be told you have cncer and true there is no cure at the moment, but as my consultant told me on diagnosis “If you have to get cancer this is one of the better ones as it is manageable.” I am just a relative newbie too, just moving towards my first stem cell transplant, but you will find many people on this forum who are living full lives many years into remission. How old is your dad and have they been able to reverse the kidney damage?

Carol

[CarolsymonsParticipant]

Hi Chris

Your upbeat post gives me hope. I am going through the stem cell collection process currently (chemo Wednesday, first injection yesterday…..yuk!) and so want to be “normal” again. Is that really possible?

Carol

[CarolsymonsParticipant]

Finally escaped from hospital at 9 o’clock last night as pharmacy delayed our departure. Just administered first growth hormone injection in my stomach..yuk!! Also have to take antibiotics for 14 days. Right now I am aching from top to toe -must be from all of the drugs and lying around in hospital….chemo, steroids, anti nausea both through IV and oral. No nausea today though so that’s a bonus, but my goodness I have never been so tired in all my life. 2 naps today almost 3 hours each and I am ready for bed now, even though I only woke up at 5:45 this afternoon! This treatment sure knocks you around!

Carol

[CarolsymonsParticipant]

Hi Nick
I only managed 3 weeks of remission after CDT and have just had the high dose chemo (etoposide) and will be starting injections tonight for stem cell mobilisation. Transplant early January. So far so good, but side effects from the chemo will continue over the next few weeks.

Carol

[CarolsymonsParticipant]

Twice this morning only part of my post has been published….very frustrating especially after a sleepless night in hospital!

Carol

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