My Journey - Jayne

[janetstanford]

Hello both

How lovely a wonderful thought
Glad to hear how positive you are Jayne and that things are moving along closer to your goal
Chris what a grand event to be part of you will be so proud on the day all involved will remember it always ....if you do get on you tube let us know i shall look and trust me that will be a first never been on the site(not me really) but for you this i will do
and i must read the news letter and get to see your picture i did read some of it and did see karen but chris i missed you (sorry) it will good to put a face to the name

take care Janet (all these are because its another rainy day and i long for the sun)

[Jayne]

Can't believe I haven't written for so long.

Anyway folks, here goes!!!

I go into hospital today (I have a bed, just waiting for a time). I start my conditioning treatment today/tonight. 6 days of chemo, 1 day of total body radiation (well 20 minutes!!) and then my stem cell transplant next Friday, 6th July. Wow.

I am actually quite bricking it at the moment. Trying to keep busy on my laptop! I cant believe I wont be home for around 6 weeks, I think that is such a long time for a home to be without it's mum. Anyway, I intend to do it in less than 6 weeks so fingers crossed.

Take care all

Jayne xx

[Nyanko]

Good luck Jayne, you are an amazing lady and I know you'll come through this in one piece!
xx

[chris]

Hi Jayne

Well I shall be singing my socks off for you on Friday - probably in the pouring rain - but no matter - we are being issued with see-through ponchos!!!!

Hope all the pre-conditioning goes well. I shall be checking your blog to see how it's going.

Let your light shine every moment of your life (words of the song!!). I think you already do that.

Everything crossed for you.

Love

Chris

[janetstanford]

Hi Jayne
yes good luck with your treatment i may this time get around to your blog i did try last time but other events took over blogs seem to be very popular at the moment but sure you will post again soon

Chris have a great time singing on friday sure you will all be fantastic and the rain i will hope it stays dry for you

both take care Janet

[Jayne]

Dear Janet and Chris

Thank you very much my chumlies (friends) for replying.

Day -2 Well I am feeling remarkably good despite having had 4 hours of campeth plus oodles of other drugs! To be honest I feel quite good.

Chris, please can you mail me your email address (jaynesnell123@gmail.com) because I wrote the article for the UK MDS Patient Support Group Newsletter today. (whilst Campeth dripping in, lol). It is currently 760 words but I may add an addendum to let everyone know I am ok and if you want to invite me back after having read it, then I will write phase 2 (day 0 onwards) for the following newsletter.

I do hope you are both not suffering any horrible symptoms and enjoying our glorious summer, not. That goes for everyone.

Loads of love and hugs to everyone (it’s the best way, kindness and caring and believe me when I say it comes back at you in bucket loads, very heart warming).

Jayne xoxoxoxo

[Sarah Reakes]

Hi Jayne, Chris, Janet,

So pleased Jayne, that the final stages of your pre-transplant seem to be going so well and that so far you haven't felt unwell - you'll know that I am up to speed with your progress via your blog and I do message from time to time. You have absolutely amazed me, and it is quite clear from all the messages from your family and many friends that they are clearly in awe of you. It is your positivity, the love of your family and your zest for life that seems to have been your driving force - you really are an inspiration to us all. Like you, I do believe that there are angels that do look over us and help us through these difficult times. It is so important to have FAITH in something that can give you comfort and strength.

Chris, all the very best for Friday with the choir - I'll be thinking of you.

Janet, I hope you are keeping well as I haven't messaged for quite some time - as you know we have had a fair few problems with two of our children being made redundant etc, so have been incredibly busy one way and another; one of them has decided to start up their own business and we are given them all the financial and practical support we can so it has been pretty full on. My daughter, Nicola flew out this morning to Ibiza to start her holiday in our apartment - she has booked a 4 day scuba diving course and I have to confess to feeling a little worried about her safety as she is on her own, but I guess that's only natural. She has done travelling on her own around Australia and New Zealand so it's not new to her, but we still worry don't we.

Anyway, must go for now as we were up at 5.00am this morning and I am starting to lag so bed beckons.

Take care all of you.

Sarah x

[janetstanford]

Hello All
Well its raining again up north
Jayne good to hear you being so upbeat about your treatment and good to hear from you
Chris how did the signing go on friday please tell
Sara good to hear from you hope all your issues are getting sorted and myself had a couple of infections last 6/7 weeks hep c(cold sores) horrible knocked me off my feet had a reaction to treatment not good then an ear infection just starting to pick up now getting back to normal
Hope to hear from you all soon Janet

[Sarah Reakes]

Hi Jayne, Chris, Janet,

Hope all is going well with you Jayne; I'm still signing into your blog and getting all the news from there and you seem to be doing amazingly well and counting down your 100 days in a positive way.

Janet, sorry you've been feeling so poorly lately and hope that you're feeling better now. I have to confess to having been feeling pretty lousy lately with similar symptoms of mouth sores/ulcers, sore throat, aching joints, low energy levels, etc, etc, so think my body is trying to fight all the bugs that are around at present. The weather certainly doesn't help. I'm going for my 4-monthly check up with the Specialist on Tuesday 17th and I'm trying to get the results of my blood test last Monday to find out if they've changed much. Have to confess that when I'm feeling generally unwell I do get a bit wound up before going to these appointments. I'm sure it's the same for all of us.

Anyway must close now. It's my birthday today and I've been out to lunch to a really nice Italian restaurant in Clevedon which specialises in fish, with my husband and it was so nice to be pampered and the food was amazing. Then tonight we went to a Rock Concert that was being put on at our Grandson's school and all the kids were performing with their tutors - Ewan was playing electric guitar and he was really good as they all were. So it's been quite a day all in all.

Take Care Now.

Sarah x

[chris]

Hi All

Jayne - sorry to read on your blog that you had a bad day and had to get Martin to do your blog. Will go off and check up on you today, Honestly, it's like I'm doing doctors' rounds going on to yours and John Watson's blogs!!

Janet - hope all your nasty ulcers etc are healing up. They are a bit of a b----r aren't they. If I bite my cheek I know I'm in for a week of agony every time I eat anything sharp.. or anything at all come to that! The singing was fab - thank you. I sang out for Jayne and John and cried at least 3 times - once when the 1500 children joined us on the day, once when the Olympic Torch arrived and once when it left as I wasn't going to sing it ever again having practised for months!!! It did rain (as expected!) but only light drizzle and we were issued with see-through ponchos!! I will post a You-tube link when I get a decent one! We are signing a petition to get the Anthem sung at the Opening Ceremony of the Olympic Games but doubt that will happen!

Sarah - Happy Birthday to you for yesterday. Tra la! Hope it was good. It was mine a couple of weeks ago - which reminds me to change my signature on the Forum before anybody accuses me of lying about my age - now 62 poor old thing! So Sarah - you are a Cancerian like me - how ironic is that in view of the MDS!!! Hope that you have some decent results - it's always an anxious time. Mine were exceedingly low (neuts were 0.46) last month - lower than they have been for years so I am hoping it was a blip. Try to put it out of mind for 3 months and hope that a summer of home-grown organic fruit veg will improve it!! Who knows! Am guzzling strawberries and loganberries at the mo and yellow mange-tout peas and normal peas. The good thing is not having to water - such a contrast from last year. Let us know how your appointment goes. Have they given up on your other symptoms?

Best wishes

Chris