Monthly Archives: September 2015

Twists and Turns

Hi everyone,
My results came in and yesterday I had a meeting with one of the consultants at Kings college. Even though my last chemo was a heavy dose, I still have Leukaemia. These cells are still fighting my treatment.
Since I was diagnosed eight years ago I have carried on in the safe knowledge that Heather is a good match for a transplant. I don’t think I considered the complications that can occur or that my MDS would progress into Acute Myeloid Leukaemia at this speed despite the intensive treatment I have undergone over the past six months.

However, the doctors at Kings have not given up on me ! Yesterday they decided to try and different tack of chemo which they very much hope will act as a bridge to a transplant. I will be having chemo for the next three weeks. I have a bottle of chemo which will slowly drip feed through my Hickman line and this will be replaced once a week. I will be treated as an outpatient, attending Kings once a week for the chemo, and my bloods checked once a week at Kingston.
I am 100% neutropenic and therefore have to continue to wear masks – hand washing and anti-bacterial wipes are become part of the routine for anyone visiting.

I have been hit this week with fatigue, I am not sure if it hasn’t been made worse by watching England lose the rugby match last Saturday, goodness knows how this Saturdays game will go, I had better plan a quite Sunday !

I know so many of you are routing for me and I thank you. This weeks results have been so disappointing but if the medical experts are willing to keep trying there must be hope.

I will enjoy seeing in Autumn in without being in hospital … Mum, Hilary and I enjoyed a lovely drive this week through Bushy Park and watched a beautiful sunset over the Thames – not forgetting that fantastic moon the other night.

Round four underway !
Take care Brenda


Being Tested

When I was told I need to have a transplant back in February and was advised that I should get on with it ASAP l never imagined six months after starting treatment in April I would still find myself waiting for a transplant to happen. I have faced many set backs, this week threw up one more.
My bone marrow test would show if indeed a transplant could go ahead at all. The results came through on Friday and in another twist to my story, the sample taken was not clear enough to show conclusive results. I had another bone marrow test on Friday…. even though I was sedated, when I woke up I could tell it had been a difficult one. Paracetamol on tap has been needed !!
This has of course given us another hit as the results are critical as to my future treatment. So I am back to waiting for the lasted sample to be processed.

I am sure that my consultant and doctor have recognised my cabin fever as they are allowing me to go home for a week whilst waiting. This is great for me, it is difficult to take ones mind off this present situation when sitting alone in a room for weeks on end.

I will still need to get checks as an out patient twice a week, this has been arranged with my local hospital which will reduce travel time.

Well, I have seen in spring, summer and now Autumn during this time, I just hope
l will have moved on before Winter !

Precious friends.

Last week I posted a photo of my dear friend Steven Bickel. Bic was visiting from the USA on his way to Portugal for a walking holiday with Annie and Don.
I have known Bic for many years, he had a wonderful sense of humour and loved life.
I get plenty of time for thinking, whilst in my hospital room. How important our friends and family are. We invest a lot of time and love into our long term friends and when in times of need, those friends are always there for us.
Annie, Don and Bic were taking in the breathtaking scenery and enjoying nature at its best. Bic suddenly collapsed and died.
I don’t need to add more, he will be so missed.

One more week passed

The waiting game is the toughest one. After feeling very unwell during the latest chemo I have recovered well. I have even been to the park three times over the weekend.
I made the usual woos and rrrrsss having not being out of my room for two
I include a few photos as some of you have wondered what my rooms of nearly five months are like, they are approx 10ft x 10ft.

As you can see, one small locker to keep personal a items in, if you thought l was a light traveler before, this takes me to another level.
I do have a small fridge …. I call it the mini bar, but other than that, it all equipment.
I also include a photo of my “view”….. Quite literally a brick wall !image I have photos of friends and family on the window sill to make the “view” a little more interesting.
Lastly a picture of my friend Bic using the colouring book I mentioned in an earlier blog. Anyone who visits can have a page …. it keeps us all occupied during this period.image
My immune system is still at zero so once again limited in what I can do, eat etc.
Let’s hope I have more news in the next few days.