At least I made it

Sorry for the black humour, years ago l wouldn’t particularly of broadcast my age but writing this blog has made it significant because l have faced several occasions durning the past two and half years where the doctors have had very difficult conversations with us. It is only down to the skill of those looking after me that despite a failed transplant l am still managing a reasonable quality of life, not to mention still here !

I continue to have weekly transfusions, but Dr.P has now set my chemo every eight weeks to see if my platelets and haemoglobin might have a chance to recover somewhat. One doesn’t know if the leukaemia cells are being hidden behind the
Azacitidine (the chemo treatment l have). I am happy to give this a go as my veins are getting rather worn out from continued cannula’s. Less frequent transfusions would be welcome but it’s early days.
During my last appointment at Kings college l had a blood test to see what the chimerism showed. I can only claim layman’s knowledge ! This should show if any of Heathers cells are active.The results did not show any improvement from the last time l was tested for this. Heathers cells do show in the T cells ( a subtype of white blood cell ) but the CD15 did not show any, l believe that is the bone marrow area.
My bone marrow is producing rotten cells that are just not wanting to be friends with Heathers. Now my interpretation is subject to artistic licence … I ask a lot of questions, Google a lot but sometimes get lost in the haematology world.
On the up side for the past three weeks my white cells and neutrophils have gone up and held fairly well. Oh the science, if only we knew how interpret this.

I have talked before about the MDS support group and the help and support they offer to people diagnosed with MDS. I understand this charity was only started in
2005/6, many of the committee members have MDS. I was diagnosed in 2008 so was
fortunate, along with my family to learn a great deal of what we were dealing with from the beginning.
MDS is still a fairly unknown cancer. Recently our Chairman, Professor Rodney Taylor died. One of his most significant achievements was gaining the approval from NICE ( National Institute for health and care excellence) for the drug Azacitidine . I mention this as l am about to embark on my 12th cycle of this drug. Just one area of work the charity touches.

This takes me into another link of fundraising. Annie’s family are taking part in the Kew 10k run, raising money for MDS. It’s wonderful that they would take the time to
train for this, Georgie and Henry do run, but l fear a few summer beers may have to be missed in the name of fitness for Charlie and Will ! Seel is juggling around a demanding job and baby, they all have busy lives. The commitment by all who fundraise is amazing.

The Gould fundraisers below.

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Any donations however small would be most welcome !

https://www.justgiving.com/crowdfunding/MDS-uk

Lastly you maybe wondering how my list of 60 things to do this year is developing.
I think a couple caused raised eyebrows with Dr.P not to mention Heathers eyes popping out during my last consultants appointment, helicopter ride, plane simulator,
Micro flying…. Hum, as l am prone to bleeding this may need a rethink. However l have been given a great alternative to think about…. I will save that for a later blog.
Some items l have achieved !
My neutrophil count going up meant l could eat smoked salmon and eat out a little more which l have taken full advantage of.
My friend Paula from Dallas visited, also Fran from the BVI so l did river trips with both of them (does that count as two?)
A visit to Kew Gardens.

Below Annie and Paula at Kew.imageJools Holland concert at Hampton Court…. It was wonderful.

Below Heather and I at Jools Holland Concert at Hampton Court

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I probably need to write another blog on this list alone, l am still 27 items short but the list is growing. Funnily enough most items take planning around chemo weeks and pacing myself around low haemoglobin times etc.

Every significant occasion seems like an achievement however large or small when you have terminal cancer, it is wonderful and fun to spend these occasions with my family and friends. We are having fun with this list !

MDSpatientsupport.org.uk

 

 

 

 

Making Lists Again

When you are young, you cannot wait for your 10th birthday when you finally go into double figures. From what l remember you start to feel a little more grown up…but when you get older double figures don’t hold the same joy, especially when there is a “0” at the end.
This year l have one of those birthdays coming my way…. yes the big 60 is going to hit. l am not sure how this happened 🤔
Forget bucket lists, l need to compile a list of 60 things to do in my 60th year !
First on the list was to eat smoked salmon and guess what, my neutrophils went up
to 2.4 last week. There are several foods that are not recommended if you are below 2.0. This is the first time in over 2 years l have reached the target. On my way home from the hospital l went straight to the shops. The following day my friend Yo and l sat and enjoyed a smoked salmon sandwich, oh joy. Of course this week l had chemo which will probably play havoc with my levels but l enjoyed every mouthful.
Now l need to work on the rest of the list, l need to cherry pick what l put on there
so my energy is spread out.

Certain things can be done to conserve energy. Online supermarket shopping when l have big or heavy items such as loo rolls, kitchen rolls, tins etc. The only trouble l have had with this is that l still think in pounds and ounces and of course these days everything is in metric, kilos and grams. It’s a good thing l have a craving for gherkins….I ended up with four kilos on my last shop.

I seem to be falling into a new routine concerning transfusions. Every week l need a pool of platelets as they have been dropping into single figures. Every two to three
weeks l need two pools of blood, l rarely get above 95 but my levels drop week by week.
Added to this my chemo every six weeks…. It goes without saying a big thank you
to all who donate blood. I know l have mentioned it before but a pool of blood costs the NHS 300.00 and Platelets require blood from three donors. I am grateful for the health care we receive in the UK, we have so much to be thankful for.

Well…. back to my list as it only has a handful of items on it so far…

PS ! Our dear friend, John Townsend who is an author has just published a new book. Many of Johns books are aimed at young people, trying to encourage them to read. In his latest book called “The stone balancer” one of the characters has MDS,
we can see that John has been reading my blog, as if this wasn’t flattering enough – he also dedicated the book to me ! That’s a first !
Plug …. The stone balancer published by Raven Books, available on Amazon !

http://www.blood.co.uk
http://www.deletebloodcancer.org.uk
http://www.mdspatientssupport.org.uk

Time passes so quickly.

I just don’t know where the time goes, but it seems to disappear….. if only l didn’t
have to keep interrupting my week with hospital appointments. Keeping track
of appointments, medication and all that comes in that package sometimes feels
like a full time job.

Despite my medical “condition” l seem to cope fairly well. I have just had the past two weekends away. The first with Hilary and friends Brigitte and Cath. We had a lovely time driving around the Cotswolds. Easter weekend we were all with Mum and Sunday was wonderfully chaotic… Children and two dogs yet somehow l kept
going. Of course l am meant to be careful around children and dogs because of my
low immune system – a lot of hand washing over the weekend.

I am processing my change in circumstances. I used to pack passport,currency, laptop etc. Now it’s a list of medication, hospital notes, the one thing still present from my past carry on list is my IPad.
I do of course feel quite upset and disappointed, having been told l cannot fly due to the risk of internal bleeding, so feel sorry l cannot visit my many friends overseas. I will probably have to watch the film “Truly Madly, Deeply” that always seems to work when l need let the emotions go, as I don’t feel I have had a really good cry yet!
Dispose this I have been privileged to travel and seen so many beautiful places in the past so l can’t really complain.

On Easter Sunday we all went to a very uplifting Easter service and so many people
who l don’t know came up and told me they were praying for me which is truly
humbling. I know the future is unknown but l take comfort from my caring friends, family and those who don’t even know me.

At least l now know the routine – every week a day spent in the haematology day unit having transfusions of platelets,blood or both. Every six weeks, five days of chemo injections as an out patient and that will be life for the foreseeable future. I have had so much chemo over the past two years, the prospect of this being a permanent fixture is not welcome, however it is keeping my cancer at bay at this time.
This chemo my hair is not falling out so that’s another positive.

I am sure l sometimes repeat myself but such is the life of living with cancer. As they say ” chemo head” comes in and is a great excuse for many things !

Facing ones own mortality

Following an appointment at Kings this week l have pondered on how to express how l feel facing my own mortality. It’s difficult because l already knew what the past few weeks results had been showing. The disappointment is eminence because of the past two years experience. Even though l knew the success rate for stem cell transplants l always believed l would beat this cancer.
The appointment with my consultant was really to confirm my ongoing treatment to keep the disease under control. One thing for sure, had l not had this treatment l would not be here today.
Kings has been my lifeline for two years. I know the doctors and nurses and admire their hard work and knowledge not to mention continued efforts to try and turn things around for me. The staff at Kingston who are also wonderful will now continue with my treatment of transfusions and chemo.
My future is in Gods hands and yes, miracles can and do happen.

I have always lived in London, so the attacks in Westminster this week were shocking.
Ordinary people going about their daily business lost their lives in the most cruel of circumstances. What this does say to me is that no one knows when they will die,
the difference for myself is that l have time to prepare.
I want to write more but at this time l am reflecting on the attacks in London and the fact that someone has lost a son, daughter, mum, dad with no preparation.
London is carrying on with business as usual and there are still many beautiful things to enjoy. I was in Herefordshire with my mum last week so here are a couple of photos to enjoy.

My Journey has taken a de-tour

In my last blog l was due to have a bone marrow test. I was nervous as l was having gas and air instead of my usual sedation. It went ahead and l can tell you l
sucked in that gas until l almost felt l was whitening out ! The aspirate was taken by one of my specialist nurses and she did a great job. My friend Annie was with me
doing the handholding. I will always admire patients that don’t have anything !

Move on three weeks and l received the results. This is where my journey changes.
When l started writing this blog two years ago l was confident of a good result and going into the 40% success bracket, especially having a great sibling match (Heather) A stem cell transplant failing was never considered. However during the time of preparation for the transplant things were not straight forward …even though l had many stops and starts l have always had faith in my medical team and they have tried everything possible to turn things around.

It has therefore come as an overwhelming disappointment to learn that after all the treatment during the past two years my bone marrow is still producing MDS cells which are primarily attacking my white cells and platelets. This leaves me prone to infection through lack of white cells and a risk of bleeding from a lack of platelets.
There are no options left. I asked my consultant if there is anything out there which could be considered if you took away costs limitations or availability in the UK. Unfortunately there isn’t, my body has taken such a bashing it wouldn’t clinically be able to take more. The NHS will not fund a second stem cell (costs start at 120,000)
but even if they did my body would not cope.

Going forward l will continue to be transfusion dependant so weekly visits to hospital for blood and platelets and also continue chemo every six weeks. The doctors feel that the chemo is possibly keeping the leukaemia at bay. I can think about that one, but as l told the consultant….. I will continue with chemo until l have decluttered my
house!

So a lot to take on board. I had already had my own thoughts that the results might go this way due to needing so many transfusions. I will keep this blog going but it is now more focused on living with MDS rather than a journey through transplant.
Who knows, with the speed that medical science moves something may come up yet.
With blood cancer there are no lumps to remove or shrink, l call it the hidden cancer.
Thank you to all who donate blood, it literally keeps myself and many others alive. Blood is used not only for emergencies but also for those of us that need long term transfusions. A days treatment with blood transfusions for me can cost hundreds of pounds so l never underestimate how fortunate we are to have the NHS but also see
where funding goes.

I think the consultants, doctors and nurses who have been on this journey with me are equally as disappointed. Remember at this time l am not in pain and still independent.. What’s more if anyone else tells me how well I look l will probably hit them !! ( only kidding ). There are going to be limitations and life changes, that’s for another blog.

http://www.blood.co.uk
wwwdeletebloodcancer.org.uk
http://www.mdspatientsupport.org.uk
http://www.anthonynolan.org
Bloodwise.org.uk

Yo Yo

Life still seems to be a bit of a yo yo. Since receiving an extra bag of Heathers white cells l have been waiting for the signs that they are really conquering my rotten old ones, the only real way to tell what’s going on is from a bone marrow test.
I went for two weeks without a blood transfusion and my platelets held into double figures (16). My neutrophils went up to 0.8 and l felt very happy about this. Now l know those who have a medical background are looking at the counts with eyes popping out, as they are extremely low compared to the normal counts but these
are good for me !
That’s when the yo yo feeling comes in, after trying to not get too excited…. the following week they dropped again.

The bone marrow test is in the next few days. I usually get sedated so don’t know anything about it, but the hospital can only do one sedation a day in the unit and they they are booked up so l have agreed to have “gas and air” this time 😳
Some patients don’t have anything but my first ever bone marrow test some nine years ago left me traumatised and l haven’t been able to do one without basically being knocked out since. However l don’t want to delay the procedure as l need to
know the results which will take a couple of weeks to come through.
I will be having a bone marrow “aspirate” which means they will take a sample from the soft tissue in the bone rather than the full bone marrow trephine. I have had this procedure done once before under gas and air when l was an in patient. I hate it either way but the results will determine which way this cancer is going and ongoing treatment.

Going forward l will start another week of chemo injections over five days as this is
potentially keeping the disease in control. The doctors and l have talked at length
about future scenarios which is why l am so eager to know what the bone marrow test shows.
I guess the next time l write will be with the results.

Www.blood.co.uk
Www.deletebloodcancer.org.uk
http://www.mdspatientsupport.org.uk

Another waiting game.

I was extremely pleased to see that Prof Mufti, the head of haematology at Kings College Hospital was awarded an OBE in the New Years Honours. Prof Mufti carried out the first UK Bone Marrow Transplant in 1986. He heads up the wonderful team that have been working so diligently on blood cancer patients such as myself.
What is amazing to me is the speed and progress of medical advances. It’s only
30 years since Bone marrow transplants were performed and we have already progressed to stem cell transplants !

The Dalek’s arrived !
At the end of December l was transfused with additional white cells harvested from Heather earlier in 2016, they have been in the freezer. On the day they arrive in a “Dalek” like unit ( if you don’t watch Dr Who you won’t know what l am talking about !)
When the nurse removes the sachet, dry ice pours out which always makes me think of a Dalek! It’s now the job to basically “exterminate” the rotten cells my bone marrow is producing. This procedure is extremely important for me as from what l understand options to turn things around are running a little low. As with everything, one has to wait and see what results show.

Over the past week l have felt rather extreme fatigue… The trouble is that l don’t know if it’s a result of the ongoing chemo, my bone marrow working overtime or that l need some units of blood. I still am having regular tops of blood and platelets which give me a temporary lift each week.

Whilst l wait and we pack up the last of Christmas l am going to leave this blog with a couple of photos.

Maureen – one of the volunteers at Kingston, it’s her take on “Elf and safety!”
Hilary,me,mum and Heather and our two favourite four legged friends – Milo and Louis. Louis is the latest addition, rehomed from Springer Spaniel Rescue just a week before Christmas by Naomi and Jon. So now both my niece and nephew’s families enjoy these lovely dogs.
Lastly the Dalek which contained Heathers vital cells.