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.
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
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.
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.
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.
I am sure everyone is now in the full swing, getting worn out with the run up to Christmas. It doesn’t matter how much time and energy one has, it’s never enough ! I also find this time of year quite emotional. I re-read last years blog entries in November, December. I was wondering if l would be discharged after almost nine months ( with a few home visits for good behaviour).
I finally was discharged at 4pm on Christmas Eve ! I can recall endless nights in my room, fully decked out with fairy lights wondering what the next chapter would bring.
We went back to my ward to say hello and happy Christmas to the staff which raised the emotions of the past two years. It was good to see so many familiar faces and show off my fuzzy head of hair !
This year up went up the tree, and then down to mum’s to do some decorating… it’s amazing what fairy lights can do !
The NHS are awarding me extra Christmas bonus points this week, l have a chemo
injection every day until the 23rd. I hope the taste bud changes don’t kick in straight away. We are looking forward to being together as a family over the Christmas weekend.
On the 28th l then get even more NHS plus Heathers bonus points and will have another DLI. This is my third transfusion of Heathers white cells. Now l know they are of top quality so praying these might finally attack and destroy my rotten MDS cells that keep attacking Heathers good ones. It would be so wonderful to be transfusion free and turn this stem cell transplant in to a success.
The doctors have used their incredible skills and tried so hard to come up with so many avenues of treatment. I am just focusing on the DLI and all going well.
I want to take this opportunity to thank you for reading my blogs, praying and sending positive thoughts my way. I took this photo last night when staying with mum in Herefordshire, a beautiful winter sky.
I also finish off with the lovely blessing which is special to my family, many nights on the run up to Christmas last year were spent listening to John Rutter’s song
The nurses often used to comment on how peaceful my room felt. I send you Christmas greetings and l look forward to reporting
the next stage in the New Year !
So I wrote about avoiding illness and promptly get a cold/cough. This is the first time
I have had one since my transplant, I can’t take paracetamol in case l mask any fevers – after a week l thought l felt “twinges” in my left lung and feared l might be heading to Pneumonia which has been a weak spot in the past. So off to A&E where I was given a jolly good check over including a X-ray on my lungs. Fortunately l was showing clear which was wonderful…. The cold is lingering into three weeks.
Other side effects have continue to bug me, extremely dry skin and strangely enough this chemo has caused some of my eyelashes to fall out but not my hair ! So my hair continues to grow back, l don’t mind the curls but wish l could use some hair colour.
So on to the bone marrow results, another mixed bag. There are no longer leukaemia
cells showing which is the good news, however there are some MDS cells showing.
I was originally diagnosed with MDS nine years ago and progressed into leukaemia whilst being prepared for my transplant.
I will continue with chemo the week before Christmas and then the following week will be transfused with another “bag” of Heather’s white cells in hope that these new cells can knock the MDS on the head. I have to believe that with all of the prayers and support everyone is giving me l will have good results from this.
On the 2nd December last year l had my transplant and the road so far has not been straightforward, however unlike last year l am not in hospital….. So l celebrated with my first Christmas decoration going up early !
It’s hard to explain the fatigue one feels and how it affects every day life.
So different from being tired with reduced energy…. Fatigue hits with a weariness
that can sometimes come over you so quickly you know you just need to lie down.
I had a big dose of fatigue just before starting the latest round of chemo. I didn’t
know if my bone marrow was working overtime or my haemoglobin had dropped.
It turned out to be HB…. a transfusion of three units of blood helped fix this.
I sometimes want to forget l need to pace myself in order to cope. Lesson learnt
( yet again ) one activity a day. That includes housework, shopping etc. Having a couple of small shops around the corner helps, it means l can go for a little walk every day. I never thought a highlight of the day would be a daily chat with the security guard in Tesco !
Heather is still on a “career break” or should l call it a “carer break”. Between mum and myself she is kept fairly busy, making sure mum gets regular visits and supplies.
When not doing that, she will often come over and help my with hoovering etc. and tasks that simply use up a lot of energy. Hence the photo….. Even from an early age it looks like l took over Heathers pram … She kept herself busy while l had a nap !
Winter is coming and so are the colds and flu. Last year, being in an isolation ward at
Kings college hospital l was also very protected from the germs for a good part of winter. This year it’s down to me to try and keep away from winter germs. I must be
the only patient that puts gloves on when entering the hospital. Of course we all know hospitals are full of sick people and germs but add some colds and flu germs on top of that, it’s a cocktail l don’t need. I wear gloves until l arrive at the haematology day unit every week and then it’s hand wash,hand wash, hand wash ! It’s the same when taking public transport to the hospital, a scarf covering my nose and mouth and gloves are now the winter norm. Funnily enough all of my regular visitors have got so used to this, one mentioned the other day she felt she had less colds last year. So tip of the month, keep those hands washed !
I feel l am almost going into hibernation, I was to a degree any way. My immune system continues to be so low l just cannot afford to be exposed to unnecessary
germs. It was easier in the summer when one could be in the garden.
I still have a good couple of weeks to go before l get my latest bone marrow results.
One of the tough parts of weekly trips to the unit is to see other patients with blood cancer sometimes declining in health and sadly two or three have recently died. I had got to know them quite well over the past year. I have to remind myself that each person is different, having different treatments and coping in different ways. None of these patients have had stem cell transplants but still have fought bravely. The
definition of battling is ” a hostile encounter of engagement between opposing
forces” …. that’s cancer for you !
So staying well is the main focus, there’s only one thing more stressful at the moment, only six weeks until Christmas 😳