My Journey - Jayne

[Jayne]

Hi Janet

I am still at home!!! I am now into my 6th week when they initially advised I would have 2 weeks at home.

I have been phoning for a room since last Monday, although I did know it wasn't likely to be last week as they were very busy. Unfortunately, a lot of patients are at the same stage of waiting for their counts to come up so I am just waiting for them and I suspect in the next few days there will be quite a few beds become available.

My stem cell transplant is currently planned for 6th July, I will go into hospital on 29th June for my conditioning treatment. The hospital are contacting my donor this week to check if he is available and providing no problems (ie holidays etc) then that date shouldn't be too far out.

I feel remarkably well and pretty normal. It's been great being at home, I could definitely be a lady of leisure (as long as I still got paid, lol).

How are you Janet?

Take care and lots of love
Jayne xxx

[chris]

Hi Jayne

Must be hard being a bit in limbo - you probably just want to get on with it!

Did you say (here or on the Caring Bridge blog) what your blast level came down to following the first lot of chemo? You are so lucky that all your blood counts came back up without help as John Watson's seem to be a bit sluggish in getting the neuts back up!! Hopefully, the white cell booster jabs will have fixed it for him by now.

I seem to spend all my time on these forums and blogs these days. So concerned to find out how everybody is doing!

Take care and enjoy your leeezure!!

Chris

[Jayne]

Hellooooo
I'm back in hospital, as of 3pmtoday!!!!! I'm glad to be getting on with my treatment however the timing is a bit rubbish. So much planned over the next few days including Matt's skydive on Saturday. Looks like we have raised over £2000, there is £1115 on the justgiving page going direct to Anthony Nolan and the rest is on sponsorship forms. I was really beginning to think I would see it.
My blasts are around zero and I am classed as being in remission. The 2nd round of chemo just ensures the job is done!
My bloods have been taken and chemo will start tomorrow, gulp.
Fingers crossed I sail through it like I did last time, however I must say I dont feel as settled at the moment, mind you it has only been 3 hours!
Take care
Jayne xx

[Jayne]

Hellooooo
I'm back in hospital, as of 3pmtoday!!!!! I'm glad to be getting on with my treatment however the timing is a bit rubbish. So much planned over the next few days including Matt's skydive on Saturday. Looks like we have raised over £2000, there is £1115 on the justgiving page going direct to Anthony Nolan and the rest is on sponsorship forms. I was really beginning to think I would see it.
My blasts are around zero and I am classed as being in remission. The 2nd round of chemo just ensures the job is done!
My bloods have been taken and chemo will start tomorrow, gulp.
Fingers crossed I sail through it like I did last time, however I must say I dont feel as settled at the moment, mind you it has only been 3 hours!
Take care
Jayne xx

[Nyanko]

So pleased for you Jayne, good luck

[chris]

Hi Jayne

Jayne (Elvis!) is in the building!!! Great to know those pesky blasts were hammered! Hope that Matt's skydive goes well and that he has recovered from his footballing injury OK? Will feature him in the next newsletter if he is OK with that?

Have you received your MDS Newsletter yet? Hope so. I have had a good read even though I have read it through what seems like 100 times already!

FIngers crossed that all goes well again this time. I'm sure it will!

Best wishes and take care

Chris

[Jayne]

Hi Chris
I have received my MDS newsletter, read it last night and I must say it was lovely to see a photo of you and your daughter.
Matt's skydive didn't happen at the weekend because of the horrible weather. We are currently looking for a date suitable for all 3 boys and if possible I would like 23rd June because I will be able to go and watch it then. I wouldn't mind partaking myself but Martin is sort of putting his foot down and isn't keen on the idea! He has no problems featuring in the next newsletter. We will take lots of photos so perhaps we can include a photo of the lads as well.
Chemo is going well and I feel good, slightly more tired so I've had a 2 hour power nap this afternoon.
Love Jayne xxxx

[Jayne]

Hi All
Just a little update. I've finished my chemo on Saturday morning, so far so good.

My HB is 11, platelets 53 and neuts 0.5. I am chuffed with my Hb because I haven't had a transfusion. My neuts are on there way down, need to get to 0 and then make there way back up. Fingers crossed, and I hope I am not tempting fate but I haven't had a 'bad' day so far.

Oh, and not sure if I have mentioned but my stem cell transplant is 6th July. I come back into hospital 29th June for my chemo/TBI. My transplant team have contacted the german donor bank and my lovely 22 year old male will be going through tests now to make sure he is fit and well to donate.

So I hope to get out of hospital in about 2 weeks (already been in isolation for 5 days and will remain in isolation until I am allowed out), so I will have a good 4 weeks at home, maybe a little more!

Take care everyone
Jayne xoxoxo

[chris]

Hi Jayne

It's all good news!

The dates you have given have Significance for me as Jun 29th is both my daughter's and my son's partner's birthdays. And on 6th July, I am singing as part of a 3000+ choir of schoolchildren and adults in Southend-on Sea on the seafront. We are singing a specially commissioned anthem by Tolga Kashif (who has already written a brilliant orchestral and choral composition based on the music of Queen - totally recommend it!). It is to be sung as we welcome the Olympic Torch to Southend and it is called "Let Your Light Shine". It is a fantastic stirring anthem with tribal chants, clapping and a lovely melody - still working hard on learning it all! I want you to think about those words as your stem cells are being infused. If it makes it to You Tube I shall send you the link for when you are recovering.

Take care

Chris

[Jayne]

Hi Chris

I got goosebumps when I read about your choir, all those children, the olympic torch and the title of your song. It sounds wonderful! I really hope it makes it to you tube and I will definitely be thinking those words 'let your light shine through' when my stem cells are are infused! Fantastic.

Thank you
Jayne