Thursday 31 December 2009

16) New Year

What will the New Year have in store for us?
I have heard things like we must take 2010 by the throat and make it a good one, not a bad idea because it is up to us to make it happen, at the moment 2010 is a blank canvas waiting for us.
Someone said to me "I hope you have a better year" I have had a fantastic 2009, it has got me to today, I pray for as good a 2010 as 2009.

Since being told 536 days ago that I probably had 3 days to live (without treatment), life has taken a new meaning, in that 18 months we have had so much love and support, more than we knew existed, you have all been a large part of our future, thank you.

In the last year we have lived well, learning to live and enjoy life, we have been to Jersey, Barcelona and a fabulous 3 weeks with family in South Africa.

May we all have a fantasic future.

Happy New Year.......... Live it

Wednesday 30 December 2009

15) Platelets

Have been into hospital for platelets, was only in for about an hour so that was great.
I now get 10 days off hospital for good behaviour (and to let the body settle) back in on the 8th for clinic and round 2 of the the velcade.

14) Airport

Up at 5 this morning after 6 hours unbroken sleep. It's great to be feeling a little better.
Have taken Fran and Rach to the airport this morning. It's good to feel useful. Hope they have a wonderful time in Switzerland.

Tuesday 29 December 2009

13) Hospital again

Arrived at hospital this morning for blood test at 9.00 and eventually arrived home at about 4 pm after the Valcade

It was a long day because there were so many people having treatment after Christmas and trying to fit in before New Year

I have had some tests on my chest to confirm its geting better without antibiotics (trust me, its getting better)

My Platelets are still low (33) I have to go back tomorrow for some more, and then hopefully 10 days off treatment until Fri 8th Jan for clinic and start cycle 2 of the valcade.

Monday 28 December 2009

12) West Kirby

Wow, I slept until 4 this morning without problems with my chest infection, I do believe its clearing, its strange how we take a good nights sleep for granted (until we don't have one).

After a lie in we decided to go out for a walk, it was very foggy in Warrington but as we drove to West Kirby the fog lifted. Averil and Jess went for a good walk along the West Kirby Causeway, I had a shorter but enjoyable one.

We are off for a meal now to Fran and Rach, any excuse, they are away over New Year so its good to be with them before they travel.

Sunday 27 December 2009

11) Sunday

What a lovely few days we have had, the joy of christmas and a realisation of how lucky we all are. If we didn't stop for a while we just wouldn't see it.

We were going to go for a walk this afternon but the weather just wasn't up to it, (and neither was I).

Saturday 26 December 2009

10) Boxing Day

After a better nights sleep we had a lovely boxing day brunch at Ann and Mick's.
The rest of the day has been spent doing nothing, "Perfect"
My chest infection seems to to be clearing very slowly, lets hope so because it is so sleep breaking, unfortunately antibiotics don't mix well with the new drug valcade.
2 more days at home before next hospital visit.

Friday 25 December 2009

9) Christmas Day

Merry Christmas everyone.

We have had a good day, good church, good food and great family and friends, with us or not, all great.

It's 9.00pm and that's me for the night if I am to see the rest of the weekend I think it's bedtime.

Thursday 24 December 2009

8) Christmas Eve

Have been in hospital for 7 successful hours, have had everything I needed to see me through until Tuesday.

Have had blood tests, platelets, pendametine antibiotics via an oxygen nebulizer, saline and valcane anti cancer drugs, that's all for today I think.

I sometimes wonder why I feel so tired (apart from bad chest and sleepless hours coughing) when all I have done is sit in the passenger seat to hospital and back ( I don't mind who drives, I just know someone good will) and then at hospital I sit around waiting for things to happen. What I don't seem to take into account is the effect of the drugs and fluids that are being pumped in doing me good.

Let Christmas begin.

Wednesday 23 December 2009

7) shops

Had a fairly good nights sleep just waking a few times with coughing but generally ok.

We went for the final food shopping at 8.30 so now that's all done the rest of the day is rest for me.

Hospital tomorrow again for 9 and then again Tuesday, how would I cope without friends and family running me round everywhere? Thankfully that isn't a worry because you are all there in your own special ways, it doesn't have to be a lift, it comes in all forms, an email, a joke, a phone call, a how's things or even just a smile, it's all special, thank you.

Tuesday 22 December 2009

6) Day of rest

Taking it easy today to try to get rid of this chest infection, I am sure the antibiotic nebulizer will help on Thursday.

We are hoping to got to church tonight, we are having an evening called A taste of Christmas, should be fun.

Monday 21 December 2009

5) More Tests

Back to Liverpool again today for more blood tests, Platelets a little low but the rest ok.

I was due to have Bortezomib (velcade) after the blood tests but it wasn't ready until this afternoon so I had extra fluids and Velcade about 12.30 finishing about 2.45, A long day but another one sorted.

I have a chest infection at the moment but my antibiotics finish tomorrow, they have decided to give me a nebulizer on my next visit instead of more antibiotics.

Thursdays visit will probably be blood tests, nebulizer, platelets, saline drip and the velcade, oh happy days.

Saturday 19 December 2009

4) Thoughts on the last few days

Myeloma is like a ticking time bomb (thats how it feels to me) we just didn't expect it to tick so fast.

I went to hospital on Tuesday for a pre-arranged blood test, Ann took me and all was well until the results, Jamie my Macmillian nurse (support and friend) was shocked to see the way the blood had changed after good results in October.

After the few minutes of stunned silence he went away and made a plan. WITHIN 2 HOURS he had finance confirmed with the Prof, Doctors checking possible next steps and the plan was made by 4 o'clock.

Since Tuesday I have had results, a platelet transfusion, a plasma exchange on 2 separate days (Wed/Thu) and started the Velcade therapy (Friday)

It wasn't the news we wanted but it has happened and we will get on with it, where else in the world could I have such great treatment? God Bless the NHS.

I can't thank Jamie, the hospital, friends and family enough for your care, prayers, thoughts, good wishes and just for being there. I thank God for technology, without it there wouldn't have been prayers being offered from all around the world within hours of diagnosis. Don't ask "Why Me", Just be thankful for what and who you have.

Don't wait for something bad to happen before you start enjoying life.

Thank God and God Bless you all.

Friday 18 December 2009

3) Start the Bortezomib (Velcade)

After lots of water and a saline drip it was time for the Velcade (new drug). The fluids and preparation took about two and a half hours, the Velcade took 30 seconds from a syringe.
I have to have blood tests and the treatment above next Mon, Thur and the following Tue to see the New year in (and many more after that).
Now it's time to watch out for the side effects.

Thursday 17 December 2009

2) More Plasma

I have been to The Royal Liverpool Hospital again today and had another plasma exchange, the main therapy starts tomorrow and is called Bortezomib (velcade), it breaks down the proteins that the cell doesn't need it then blocks the proteasomes so that the proteins build up in the cell and die (rather them than me). Thats the theory lets hope it works.
I don't understand how it all works but I don't understand how mobiles phone works either, I'm just glad they do.

If you want to read any more about Bortezomib(Velcade) Click the blue.

Wednesday 16 December 2009

1) Here we go again

I have had a plasma exchange (blood filtering) today, this takes away some plasma cells, I am having another one tomorrow, it takes about 2.5 hours but does thin the blood and gets rid of bad plasma cells.
I start an intensive treatment on Friday called Bortezomib (Velcade), its job is to break down proteins that the cells don't need.

Thats all for now but please leave comments or just read and email me, your support helps so much.

I will update tomorrow and after that whenever there is anything to tell you.