[Anonymous]

Sorry, just testing to see if i can use the forum as I have had some problems posting.

[Anonymous]

Hi all

I started this journey in January 2011. Probably not related, but I got Pleurisy in Jan 2011, which was rather unpleasant.

In June of 2011, I had a TIA, mini stroke. Whilst in hospital in Chelmsford Essex, I got informed that I had a small hole in the heart, was anaemic, then got told I had Myeloma, all in the space of a couple of weeks. Needless to say, I wasn?t overly impressed.

I started off with one dose of Thalidomide, but was intolerant of that, so got switched over to Velcade, and had three cycles of that. My protein came down to 3, and had started off at 52.

I am now under Bart?s, and just had a lung and heart function test yesterday, which was fine. I go back this Friday for my first dose of chemo, followed by daily injections for a week, prior to going back for the SCT.

As a completely blind person, I didn?t like my time in hospital last year, as the nurses just didn?t get blindness. I?m really hoping the staff at Bart?s have more of an insight to sight loss, as I could really do without that on top of what I will be going through.

I?ve just been looking through older post on the forum, a have found them very useful. I especially liked the information on side effects prior and post SCT, so thanks to the contributors for that.

I?m obviously going to be around for a while, so look forward to further reading.

Thanks for reading

Oh, and ifn case you are wondering, I use a screen reader on my laptop for reading and writing posts.

A very nervous Terry

[mhnevillParticipant]

Dear Terry

Welcome. Sorry you've had to join this select fighting band. No wonder you are feeling nervous with so much to contend with. Others will help specifically on SCT side – I haven't had one, but just wanted to say Hi and send my best wishes.

Mavis

[PerkymiteParticipant]

Welcome Terry, My you have been through the mill. You will find some good support and understanding on this site and there is plenty of good information, but best of all there are some real nice people:-D

Kindest reagards – Vasbyte

David

[webteamKeymaster]

Hello Terry
I have to apologise to yourself and the other people who posted replies to you post. I was trying to merge your two posts together so you would get all your replies in once place and I have accidentally deleted your original post. I'm searching for a way to retrieve the two lost replies right now. Again please accept my apologies.

Regards
Stuart.
Myeloma UK Webteam

[tomParticipant]

A Warm Welcome Terry you wil find the folk on here a great Help…… Tom Onwards and Upwards….

[Anonymous]

As I mentioned in the previous post, I go to Bart?s tomorrow, and get given the chemo followed by the week of injections in order to stimulate the stem cells into the blood stream.

As this is the first lot of chemo since I finished on the velcade at the end of November, I wanted to know at what point, into starting this new treatment that I should expect my hair to fall out. I didn?t lose it during the previous four months of chemo, and not look in forward to losing it this time.

I understand that everyone looses their hair on this treatment plan?

My eyesight issue was problematic in my previous time in hospital, due to nurses just being clueless. E.g. some of them would just walk over to me without speaking, and shove that bloody probe thing in my ear to take my temp. I jumped sometimes, because it came so out of the blue. It only takes a bit of simple communication to avoid stuff like that, but they just weren?t getting it. I do sincerely hope the staff at Bart?s are a little more clued up.

Funny today, as I heard my four year old saying she might not like Daddy with no hair, (poor little thing)

Anyway, any general comments would be welcome with regards to what I may expect as of receiving my chemo tomorrow.

Thanks.

Terry

[tomParticipant]

Hi Terry
Its me again, I just wonder how you will cope with the "Run's" when you get them in a strange room and trust me Terry you have no time to think your jim jams need to be down as you reach for the plug from your drip and you need to kick off the jim jams as you RUN to the loo most of the time I dint make it and I can see he he,

Wishing you well all through it

Tom "Onwards and Upwards"

[ElizellenParticipant]

Hi Terry, I think my post was one of the missing ones, so here I am again.

Apart from welcoming you to the club none of us asked to join, I think I suggested in that post that you should mention to your consultant and medical team the problems that you experienced the last time you were in hospital.

If you tell them plainly how if felt to not be warned before someone touched you then hopefully they will make sure that all their staff are told not to surprise you by sticking anything in you without warning!!

It would not take much effort for someone to stick a note on the door or beside your bed giving instructions on how to approach you, so temporary staff are made aware and can behave appropriately.

Eliz
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