Tuesday, 11 October 2016

Power of persuasion

I thought I would share with you all how the last week has gone. Last Tuesday and Wednesday passed without event. There was the usual long wait on Tuesday for Mike's treatment to make it to the ward, but that really is the norm I'm afraid. The fun didn't start until Thursday.

When we saw P.M last Monday she had asked Mike to make sure he arranged to have a line fitted that was suitable for dialysis during his SCT holiday. We know that a line can be an infection risk, but given the amount of blood that leaks around the needles when Mike's platelets are 65 or below, we had been extremely worried about what would happen when his platelets hit rock bottom. When P.M. told us about the line we were very relieved. 

On Thursday morning I took a call from the transplant nurse. The line had been vetoed by the renal team at the QE, Mike had GOT to use his fistula. At the time of calling Mike was sitting waiting for his access sites to stop bleeding, so I had to relay what had been said. Bearing in mind that Mike had been leaking blood for three and a half hours of dialysis, Mike hit the roof. Once we'd got him patched up he was straight off to see our renal nurses, the nurses on the dialysis unit and then home to call the QE. He spoke to anyone and everyone, whether they wanted to listen or not. Eventually a doctor on the renal team said he would look into it (he couldn't work out how Mike had got his number, Mike had actually been passed around and eventually been transferred to him). 

On Friday morning we got another call from the transplant nurse who seemed a bit surprised at the number of emails and phone calls that had taken place in 24 hours...... She told us the QE had changed their mind on this occasion and that Mike would be allowed to have a line, that the renal nurses would be going up to the haematology ward to train the nurses in dialysis hygiene (don't ask why they don't already use proper hygiene!) and point out that "protocol" had been overridden. 

Mike (and me) are over the moon. 

13 weeks to go.

Tuesday, 4 October 2016

The countdown begins.

Hello again. Long time no see. I had hoped that when Mike restarted treatment he would continue to update you all, he obviously didn't :)

Today we start cycle 5 of his VCD treatment. The last four have passed pretty much without much to say, apart from one case of pneumonia and low platelets that according to "protocol" are not low enough to warrant a transfusion, but which are low enough that, while on the dialysis machine, the needles have a constant trickle of blood from around them. Well it's only for four hours! 

Yesterday we were given the provisional date for Mike's second SCT, get your diaries out and pencil in January 11th. The actual event depends on Mike's numbers having come down enough, there was a blip due to the break in treatment due to the pneumonia, which had the docs reaching for an alternative. Luckily the Velcade seems to be still working. Mike was asked if he would prefer before Christmas, no thank you was his reply. Everything seems to be the same as last time, the timetable hasn't changed in six years. I wish I could say the same.

This time I have no humour to add to the proceedings. I am in a permanent state of depression and anxiety. I will however try and keep you all entertained or at least informed. 

14 weeks to go......

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


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!