Peacock superstition.

It's peacock blue week. I should have posted earlier but Mike was off having a central line fitted Wednesday which delayed the dyeing process. The 11 a.m. appointment dragged on until 5 p.m. by the time they had added platelets and an hour long antibiotic!. The dialysis unit also very kindly gave Mike a nasty virus, either man 'flu or the real 'flu (how can you tell the difference ladies?)

We also received a letter from the QE telling Mike to call at noon on the 11th Jan to confirm whether they have a bed. I thought now they have a nice new ward that the date was fixed, apparently not. I have a sneaking suspicion that like last time, treatment may end up being delayed. I hope not, I'm going to look a bit daft walking around bald while Mike is still sporting a full head of hair. :)

I have to confess that I am extremely anxious about the whole SCT. That is a post for another day.

After all four colours I have decided that the bubble gum blue of last week was my favourite, 

We have yet to decide what colour I should be for Christmas.

So blue.

The VCD is over, no more chemo until the Melphalan in January (fingers crossed). Mike's numbers went up, but Dr B. said it was because they are using a new system.  We now have another colour applied to the rainbow unicorn and I am bubblegum blue.

The problem is, it isn't just my hair that is blue. I miss Paula and I know that her comments during our hair raising antics would be humorous and cutting in equal measure. I know people are reading the blog, but they aren't interacting with us. I miss my kids, having someone other than Mike to talk to. I'm worried, not about the SCT itself, but about how I am going to cope alone with looking after Toni and travelling to visit Mike. My mood is down in the depths and I'm struggling to drag myself out. Mike is fed up of me and has told me so.

Lavender's blue, dilly, dilly.

So what have we been up to this week? Mike is generally well, the regime has built up over the last few months and he finds himself a bit tired, without a sense of taste, and generally numb all over. He spoke to one of the haematology doctors and it was decided to continue as there is only one Velcade dose left.

Yesterday (a day late) we got out the next hair colour. Again people were given a chance to choose via FB, between green and lilac, lilac won. No one wanted green. 

After showing him the rainbow unicorn My Little Pony, Mike INSISTED on having stripes. Luckily there was plenty of pink in the bottle from last week. 

I just went for the lilac. I'm not sure if it is my hair, but the colour just doesn't seem to be as intense as it is on Mike's.

Next week we have a choice of two different blues:

Peacock Blue or Bubblegum Blue.

What do you think? You can tell us in the comments here or pop over to the JustGiving page.

Candy girl.

After a very brief poll on FB (we got 5 replies) it was decided, with 2 votes that our first hair dye colour should be........drum roll............PINK!

Cotton candy?

The first stage

Mike's eventual look!?!

The aim eventually is to look like rainbow unicorn My Little Ponies.

Thank you to everyone who has already donated, it is very much appreciated.

Remember the ultimate aim is: BARE63!

Blank canvas.

I forgot to upload photos of us both after the peroxide, so here they are.

Mike looking super white.

Me with some orange!

As you can see, Mike isn't as good as me when it comes to applying bleach........ Still, orange is the colour for Myeloma UK, so I fit in with the reason for bleaching in the first place. As I mentioned earlier, we are going to try and raise funds via JustGiving over the next few months. 8 weeks of crazy colours followed by the head shave just before Mike goes in for his SCT. What we would like people to do is go over to the JustGiving page, make a donation and leave a message to say what colour we should use next. 

Peroxide pair

Never a one to miss out on the fun, Mike has decided to join me in the rainbow hair challenge!

We are currently being bleached.

Bare63

Here we go.

With nine weeks to go until Mike's SCT we have started the count down to BARE63. You all remember my fund raising post don't you? Just in case you don't you can find my original blog entry here. 

There has been a slight change in plan, instead of raising £2,500 then shaving my hair off, I am definitely shaving my head on January 10th 2017!!!! May be people will take pity on me once I am naked and cold :) 

Last Thursday we (I) initiated stage 1.

A pixie cut. The cut is dual purpose, it will allow my ears to acclimatise to the cold weather and at the same time make it much easier to dye. 

The second part of my fundraising is that we will be dying our hair a rainbow of shades. Yes I did say we. Either today or tomorrow Mike and I will be getting out the peroxide and bleaching our hair. Stay tuned for further updates!!!!!

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.

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......

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................

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. 

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 1, day 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!!!

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. 

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! 

My JustGiving page is: https://www.justgiving.com/Lornaandmickyour-loma