Tuesday, 10 May 2016

Cycling made easy? Or pedalling like mad.


Hi again folks!

I've spent a lot of the last year or two trying to ignore myeloma and not the myeloma "crowd" for a couple of reasons, 1) I needed to try and image while my health was good, that I had a normal life. 2) I've been struggling with the addition of kidney failure not related to the myeloma, but requiring me to take time out to be differently ill and to learn a different cycling system, not one of velcade, dex and cyclophosphamide, but one of 4 hr stints on a home dialysis machine which was kindly supplied by my local hospital after 3 weeks training when I got tired of 6-7 hr sessions on the renal dialysis ward. All of this only made possible by the wonderful dedication, help and love of my beautiful wife Lorna who loves sticking great big needles into me on a daily basis :-).

Well, today I have had to jump back on the myeloma bike, as it's the first day of my first new cycles of chemo.

The day started with a trip to New Cross Snowdrop ward at 9am for bloods, then a race back home to get on the dialysis machine in time to race back to Snowdrop at 3pm for my VCD chemo. So yes, I feel like I (sorry..... we) are on our bikes pedalling like mad.

I'm upright because of all of this though, and because of the aforementioned wife who's dedication keeps me so cosseted in support. This I am anxious that the world should know:-).

Now that I am full time back to Myeloma I would like to get back to daily blogging and to chatting and helping in the Myeloma community, so if your out there and see this then drop me a line. I'm also looking forwards to recreating some of the black humour that helps Lorna and I get through by having "to die for" fun and laughter moments, so please don't be offended, laugh with us if you can.

Now where's the link to myeloma friends on facebook................

Wednesday, 23 March 2016

Limbo

Hello dear readers. 

I desperately want to blog, but I don't actually have anything new to say. My JustGiving page has had no new donations since 25th January and we still have to wait until April 21st (it was meant to be 7th) to see Dr. B, although we did see the stem cell consultant a couple of weeks ago, so treatment date is delayed again. Mike says that's great but the lack of concrete plans makes me jittery. How can I make arrangements when I don't know when I am arranging for? Meanwhile Mike is still getting on with the dialysis whilst gradually getting more and more fatigued, his hb is now below 10 (100 on the new system). 

I'm stuck in limbo.

I hope you are all well. 

Sunday, 21 February 2016

Blue period, black comedy.......

It's official. Mike will be going back onto treatment in April. The plan is to have a course of chemotherapy followed by a second stem cell transplant. The path however is not so easy. 

Before we start they have to first check whether Mike still has enough stem cells stored, who remembers the angst back in 2010? If you need a reminder you can read about  day 1day 2 and the final total . I hope they did keep half back, if not, then they might be able to get a few more out. 

The next hurdle is finding a drug to treat Mike with. Unlike our cousins in America, Scotland and Wales, NHS England has "rules" in place. You can't have Velcade a second time, even if it worked brilliantly when given in part previously. Between NICE, NHS England and Mike's kidneys being useless we have very few options. No trials will have him, the likes of Revlimid could cause a clot that would destroy his dialysis fistula, the old saying "stuck between the devil and the deep blue sea" comes to mind.

Mike is very laid back, Dr B. will work something out.......

Lorna is feeling like a caged animal whose life is in the hands of everyone else, with no control over any of it. 

I realise this time around that all my angst last time was caused by the feeling of not being in control of anything. I know because it is exactly the same this time. Who knew,  I am a control freak!!!



Saturday, 6 February 2016

What to do?

I am only a couple of weeks into my fund raising but it has become clear that there are people out there who have decided they won't sponsor me as they don't actually want me to shave my head. That leaves me in a bit of a quandary. Do I let down the few who have generously donated already and not shave my head? Do I come up with another idea? Do I do it despite not reaching my target? 
It has left me feeling a bit useless. What with Mike's dialysis five times a week,  looking after the essential household tasks and trying to run a small business I don't have the time to spend training for an athletic task. So dear readers I really need your help with coming up with a plan. 


Friday, 22 January 2016

One for the ladies.



How many off you in the past have wanted to raise vital funds for a charity and yet not had the resources or ability? Skydive? Not for me. Abseil? NO WAY I can't even paint the ceiling and any way Mike already did that. A marathon? Er, not this year. I don't have the contacts or the time to organise a ball or the grand "June Garden Party" I dream of. 

So for all the ladies out there and some of the men I have decided to take on something that is possibly braver than a 10 second (I do underestimate the time) skydive or lowering yourself on a rope (even if it is from a high bridge!) I have decided to raise money and when I reach my target shave my head. As anyone who has lost their hair will know, the commitment is rather longer than just a day. 

I originally intended to shave my head in solidarity with Mike five years ago, without raising money for Myeloma UK, so this year as Mike approaches his next round of treatment, he'll tell you all about it soon, I have set myself a target of £2,500 and when I get it I will go bare! 

So dear blog readers, if you can spread the word globally, share with family and friends and maybe donate just a small amount I will hopefully get a bare head while the weather is good during the summer! 






Friday, 18 December 2015

An early Christmas present from Dr.B

Yesterday, exactly 6 years to the day ....... (17th December 2009) I was given another early Christmas present from my consultant Dr. B. 
Yes folks it's time for me to jump on the Myeloma bandwagon proper again. The Proteins have shaken and spun to 15 and Dr. B has his thinking cap on and has given me a six weeks appointment in which time he hopes to have worked out my treatment regime.
In cricketing terms 5 years post SCT is a damn good innings, but I still feel a bit stumped. There are a few tests ahead, but hopefully I'll be batting for a few more years yet.
Well at least I get to exercise my funny bones again....... BLACK HUMOUR HERE I COME AGAIN!!!!!!!!!

Wednesday, 11 November 2015

Christmas is coming!

I know that statement is a tad obvious, but yesterday I made my Christmas cake. I didn't bother last year as I seemed to be the only person to eat it previous years. The idea of Christmas has me jumping about like a kid, I am enjoying the build up, knowing that the actual day will be tinged with sadness, okay a lot of sadness. I miss my kids on Christmas Day more than any other day of the year. The being woken at 5 in the morning to be asked if it was time to open presents, the excited looks on their faces. The fun and games, the TV was banned. We had a very relaxed "eat what you like" policy, no slaving over a hot oven, a large buffet of food was laid out and everyone just helped themselves to what they fancied. Times change, I know that. One is working, two have new families who they spend the day with, one is far away and the last can't decide where she wants to be. I just hope I can get them all together for the now traditional "Italian Extravaganza". I won't bore you all again with the details, you can read about it here or even here

Mike says the same thing every year, "let's spend next Christmas somewhere sunny" and every year we have the same discussion about what I should cook! This year it will be turkey and all the trimmings. We invited one of Mike's oldest friends and his new wife over for Christmas Day. We didn't want him spending another one feeling so depressed he wont even get out of bed! 

Talking of Mike I was very remiss in not updating the blog on his discharge from hospital last week. He seems to be on the mend, he is certainly a lot better than he was even last week when he came home. 

I hope you don't mind me boring you all dear readers with my Christmas preparations, Mike is sick of listening to me already!!! :)

My fantastic 5