Friday, 2 December 2016

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.

Thursday, 24 November 2016

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.

Wednesday, 16 November 2016

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!

Friday, 11 November 2016

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. 

Wednesday, 9 November 2016

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.


Tuesday, 8 November 2016

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!!!!!

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.