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.

Christmas Bonus

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.image

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 !

Winter Colds

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 !

Fatigue and self preservation.

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 !

image

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 😳

This all sounds familiar.

I feel there is no rhyme or reason to the way my cells are behaving. My platelets in
particular have needed “top ups” every week ,the levels often dropping regularly
under 10 – the normal level should be 150- 450.
Then for the past couple of weeks they have suddenly had much higher
levels and then drop again…. It’s hard to guess what’s going in on the inside. The days of getting excited pasted a long time ago because things constantly change and l know another course of chemo will take its toll and alter everything yet again. As mentioned on my last blog, a bone marrow sample is the only way to get an insight.
I had one on the 31st …. Annie came with me. I always have sedation as l can’t tolerate the pain and sensation of the process and therefore need to be accompanied
in case of after effects. I was hoping l wouldn’t need a blood transfusion as well and in fact I didn’t ! Some people tolerate bone marrow tests much better than l. Having said that l know a lot of nurses and doctors who also say if they needed one they would also have sedation. I don’t remember a thing but the evidence is a rather interesting bruise !  image
I will get the results in a few weeks but until then another round of chemo – sound familiar.
I managed to snatch a couple of days down at mums before starting, the days have been getting cold but the colours of Autumn are beautiful, it’s funny to think l missed all this last year. I lose track of time.

The weird and wonderful.

The following day after l posted my last blog l received a call from Kings asking me to go in for another “DLI”. In layman’s terms, a top up of Heathers white cells. These were harvested from Heather several months ago and eight little bags were frozen
for use at a later date.

image

This is my second bag. We are hoping these extra cells will put my own remaining rebellious cells to bed and turn things around . I feel it’s a little like calling in extra troops. This little bag contains over 5 million cells… Just white cells and not to be confused with stem cells although the process of harvesting them is similar as you would have seen on a earlier blog. It will take a bone marrow test to get the full picture which l will have at the end of the month.
It’s now eighteen months since l started treatment, everyone has different ways of coping. I feel it is sometimes harder on my family and friends because l can be very blunt when talking about my cancer. We all know we are going to die but when you are faced with circumstances that could mean it is earlier rather than later one looks at things very differently. As you know my doctors are working so hard to turn my treatment into a success but l think it is challenging at times. My consultant is very straight forward with me, she has got to know me well and appreciates l like as much information as possible. I have an urgency to get things done even though my brain
works faster than my body. I know we hear people talking about bucket lists, but l struggle with this – so far it’s only got the ability to eat smoked salmon and salad on it. Being neutropenic l need to be at a certain level to freely eat some items because the bacteria they hold could enter my blood stream which could potentially make me very sick.
As a transplant patient one can get many side effects, in my case l have had many eye infections. I was sent to the eye specialist to get checked this week and when the doctor asked me my age l said 57.. So the chemo has affected my brain as well,
I knocked off a couple of years ! We did have a chuckle over this but of course l was this age when l started treatment. I find the mind blocks out many things and is particularly good at blocking negative memories, l sometimes forget l spent nine months in hospital last year when accounting for time. Eyes are ok, the doctor feels the excessive rounds of chemo may have had a negative effect. It is not surprising, nine rounds of chemo,some very aggressive over the past months …. that’s a lot of nasty chemicals going through the body !
I wouldn’t like one to get the impression that l am beginning to struggle with my circumstances, although living such a limited life can be depressing at times. My blog has become a diary for me and it is sometimes difficult to take on board the extreme
life change that has occurred, after all it was only just over two years ago l was hopping on a plane almost weekly with my job. Now, as l still live under the Heathrow flight path l have turned into a plane spotter, guessing the airline logos as they go over head !
When people ask me how l am l want to reply ” still here !” which of course would not be politically correct… but the truth is that without my treatment so far l probably in fact most certainly would not be, so the battle goes on. I know my coping ability is so much easier not only because of my family and friends but also the thoughts and prayers so thank you !