Charities and Costs

We had joint winners for our “Sunflower ” olympics, nurse Mary and volunteer Maureen. Squires garden centre judged the entrants . Heather …. my sister was a
runner up, nurse Becky and Hilary, my other sister came joint losers ! They won a bottle of baby bio and some …. Sunflowers seeds 🌞
We raised 110.00 for leukaemia research, I chose this charity because more than one of us has been affected by leukaemia…. directly or indirectly.
I have made it clear l am not running a Christmas tree growing competition !

I have a variety of charities l have reason to support from my own cancer.
I didn’t know what MDS was when l was diagnosed and l learnt all about this cancer at one of their support meetings.
Most of us know Macmillian nurses give a wonderful service to those that need care at home. They also publish a variety of books that give information to cancer patients ranging from emotional support, the effects of working, fatigue or planning ahead for an unknown future. Macmillian also have drop in centres in some hospitals such as Kings where one can have a cuppa in between appointments, this is a wonderful sanctuary in a hospital !
The rest are self explanatory and l have probably missed some, the point is that l have personally benefited from most of these listed.
Blood wise
Kings college hospital

I was brought up fund raising, Mum and Dad always seemed to be constantly fund raising. We were always involved in one way or another.
The National Health Service is under such financial pressure, we are consistently reminded about this in the news. I get quite upset when people say we have a free service. It is our taxes that fund the NHS. This brings me back to the issue of cost again. As l sit in the day unit l know just my treatment today has cost almost £1000.00
Two units of blood and one of platelets, at approximately 300.00 per unit (thank you blood donors) but the more staggering costs is that of transplants which cost anything from £50,000.00 to £120,000.00. So when I add on the cost of my 9 months in hospital, the cost of the nurses, bed linen, meals, cleaning and everything else that goes with it l know l have been privileged….. not to mention expensive. However that been said, the NHS have now declined to fund 2nd transplants should they be needed. The Antony Nolan trust have estimated 22 patients relapse each year.
With my business head on l can understand why funding for some blood cancers are facing cuts. Cancers which effect so many more people such as breast cancers receive a lot of support but also save so many more.
Quite a dilemma. I wonder how l would feel should l ever need a second transplant.
We are still trying to get Heathers cells into full action in my stubborn body.
Thanks you for your ongoing support, prayers and messages. They do mean a lot to
me and my family.

Catch Up

Two weeks ago l didn’t need my weekly transfusions for the first time in eighteen months, l got really excited but it was another temporary ” high”. I also had a brief visit to A&E a few days ago as l thought l was coming down with an infection, l had a few indications including a raise in temperature. It was a false alarm. We are told to report to A&E if we have any symptoms as infections can escalate at speed. The only problem is this can make you a little insecure if not paranoid at times.

I met with my consultant at Kings this week. Dr.P advised me that there were some
improvements in some areas but it still would seem l still have my cells battling Heathers. It will take a bone marrow test to get the full picture. I will be having this in around three weeks as l need to have another week of chemo first which starts next week. As time goes on l can’t help but feel this must surely be my biggest test of patience, waiting for a change to recovery, some normality to everyday living.

Now to the “Sunflower olympics” 🌞 ……and just like the olympics we have finalists,
l hate to say it but a couple of non starters and some disqualified !

In the final we have : staff from Kingston Hospital haematology day unit, specialist nurse Lesley, nurse Mary, reception Lorraine, Maureen and Joan our volunteers.
Additional competitors are Mum, Heather and myself.
The non starters were nurse Becky and my sister Hilary….. Their plants …. Well they didn’t get anywhere. Disqualified are Heather ( our friend ) who grew a beautiful sunflower but as everybody else had plants from the same seed packet it seemed
only fair to make it equal. Also disqualified are Bridget, Annie, Sal, Georgie and Henry.
The end results are good, but the plants were actually in my care … Sorry folks but thank you for getting in the spirt of things, not to mention your entry fee !
I am off to the local garden centre, armed with photos to get them judged.
Results will come in next week !

Photos in order: Lorraine, Brenda, Bridget, Heather, Hilary, Brenda, Joan, Nurse Becky, Mum, Lesley, Mary, Annie Georgie & Henry Sally, Maureen.



Hats off and other misc

The time has come for a new challenge…. Taking off the chemo hat.My hair has been
growing back but resembled a fuzz ball. However l can’t wear a chemo hat
and then suddenly reveal long flowing locks ! So David, you have seen him before on my blog, shaving my head when my hair started to fall out, he trimmed what I have giving it a bit more shape. This is where the vanity steps in. I have never had such short hair not to mention greyish hair ( actually l am sure my hair was grey but us girls know how to handle that one ! )

I don’t really recognise myself and actually don’t like the look at all. How strange, l found this stage harder to deal with than losing my hair. That’s how it feels anyway.
The only reason l am adding a photo of this new look is because even my nurses took a second glance when l came to hospital so l want anyone l see to be prepared.
I will certainly be researching hair colour without chemicals…. Or maybe consider taking my unused wig back out of its bag. Anyway enough on that subject 😕

My biopsy with dermatology came back as inconclusive so the dermatologist and haematology doctors need to have a discussion about if and when l might have the additional white cell transfusion. In the meantime I still get the occasional rash.
Because l am on a “chemo break” l had my first week off from transfusions. It is sometimes difficult to think l will have chemo again in two weeks time which seems illogical as it will have the reverse of what seems to be positive results.The complexity
of blood cancer continues to amaze me.

Over the past couple of weeks l have broken a couple of “rules” but this has to be done in order to keep a sense of normality not to mention sanity. A group of us went to see “The go between” …… So l traveled on the tube, not recommended…. Went to the theatre….
not recommended and throughly enjoyed breaking the rules. The show was actually extra special because Heathers god daughter, an understudy in the show was performing as the leading lady. Jessica (Duncan) was wonderful…watch out for a budding star.

Spending so much time at home has not been so bad whilst the olympics have been on, although the tension and excitement has warn me out. I also have a pet in the garden, a robin. He actually looks like he has been in a bit of a scrape himself but
seems to follow me around in the garden. The sunflowers are all beginning to bloom and l am doing my bit for the bee conservation as they are very attracted to them.

Over the bank holiday weekend l managed to get home to mum’s. I was so happy as last time l had to cancel due to infection. The whole family managed to come down.
It was lovely to spend some time with the children. It was the first time mum got to meet the latest addition, Finley- her forth great grand child. The children were taught how to wash their hands “like a doctor” which they took very seriously ! In fact we all had to do a lot of hand washing as Emily and Chris have a lovely dog called Milo and l couldn’t resist him. If your immune system is low, one is meant to be careful around children and pets but as l said …. l have enjoyed breaking a couple of rules, my hands have never been washed so much. One has to sometimes do the normal thing, having
been neutropenic for so long is sometimes frustrating !

Sometimes I struggle about what to write.

Sometimes l struggle about what l can write about and then like a bus you wait for one and three come straight after each other, things happen. Having been in this situation for so long l sometimes wonder if l will ever beat this cancer. I know the statistics for survival of stem cell transplant are not exactly high or low depending on your view… I also know that my consultants would not keep spending NHS funds if there was no hope. It’s difficult.
I can’t speak for other cancers but in the haematology world we get to know our nurses and doctors well because of our frequent visits. The medical staff get to know our difficult veins, reaction to some treatments etc.
Something occurred this week that l completely identify with.
My Dad died two months before l was told l needed a stem cell transplant. I was at that time recovering from severe pneumonia. My Dad had a short illness and his
last few days were extremely difficult as infection took over.
After Dad died, Heather took a thank you card to the hospital staff, nurses and doctors. In the card she also included a summery of our dads life so that they had insight to the person they had been treating.
This week Heather received a card from one of the doctors who said she was astounded at how much the man she had been treating had given to his community. This wonderful doctor also said that it had affected the way she way she practised, realising that the patients she treated had lived a life, there was more to Dad than just being another unwell elderly patient.
It is very humbling such words but it is so true. Our doctors and nurses are so hard pressed with deadlines, short staffing , it is not surprising that we the patients are part of the process and need to be moved on as quickly as possible. I for one sometimes feel l have lost my identity … This could be because l know can quote my hospital number without looking at my wrist band !
I have been in both situations …. With medical staff that know me and also on the ”
Conveyor belt ” of hospitals. We have been very moved by reading this doctors card.
She is planning on running marathons for charity and has generously offered to split her total raised with a charity of our choice and her own chosen charity – the British lung foundation. We have nominated Tear fund, Dad was one of its founder members. There really are some wonderful people around us.

Last week l shared that l would be receiving another unit of Heathers white cells.
We went to Kings, had the usual blood tests and the doctor came with the consent form etc. Whilst l was updating the doctor l pointed out a rash that had appeared ….
It turned out to be a show stopper. The chances are that this will be another graft verses host ….cells are having a little fight again. So off to dermatology where the consultant also agreed it may well be a problem and a biopsy was taken. It will take around a week for the results. Firstly, what a service. This is the advantage of being treated in a specialist hospital, everything is on hand. As a result we came home with
just a dressing and a stitch to show for the day.
Even though l know l should feel deeply disappointed, l have learnt that haematology is a forever changing world, there have been so many stops and starts that l think l have just learnt to accept each situation as they come along.
To give me additional donor cells if l have a conflict going on can potentially be extremely dangerous.

So what to do all day!

I don’t know where the time goes considering my only business is with the NHS,
although that takes some managing. Depending on how l feel l aim at one major thing
from my “list” book a day. If you have been following my blog for a while you will know about my ” list” book. The other day l was reading my blog of a year ago. I had
written about the how l expected everything to be over and l would have been recovering, little did l know some eighteen months later the fight would still be going on. Last year l had made a list of things l wanted to do this year which included taking up horse riding again !!!
I have really enjoyed spending time in my tiny garden this summer. Last summer l was looking at a brick wall from my hospital room, previous summers when l was working l would often be away from home. It is very tempting to sit in the sun, but apparently this doesn’t mix with chemo…. Even though l pile on the factor 50 ! I have even managed to grow some tomatoes…. Well to be honest l only see four so far !

I have just finished yet another week of chemo injections. On the plus side, my dose was a lesser strength than before so although tiring, the side effects didn’t have the same impact. I am been given this chemo to try and stop any of my bad cells from developing and attacking Heathers cells. In fact l had a treat this week, Georgie – Annie’s daughter has just started working at Kingston as an F2. She came and found me on one of her induction days and held my hand, kept talking and the injection was administered without me even noticing. Georgie will be working in A&E …so
if l get any more infections l will be in good hands !
At this time l am pleased to report there are no signs of the leukaemia cells showing.
I am a bit like a car, needing a top up every week and so l return to Kingston for supplies of platelets and bloods when needed. I go in once or twice a week at this time.

I am also going to Kings College this week to have another transfusion of Heathers
White cells. You may remember they were harvested several months ago and frozen.
Last time l had this procedure, Heather and my cells had a little battle going on, this could be one of our personality traits coming out… we both like to be in charge and l for one can be stubborn ! As a friend said the other day, it’s a good thing l am stubborn as it’s made me keep going ! I hope that by adding more of Heathers cells, my bone marrow might start producing good cells and turning this situation around.
Being back in the hands of the transplant team has made me feel we are finally taking a step in the right direction instead of what seemed to be treading water.
So hospital appointments seem to keep me busy.

The chemo is beginning to give me another “detox”. Coffee is going down on the list, chocolate is also in decline but anything salty is moving up on the taste bud list. I am still craving for salad, but it’s banned for now and so madly looking up recipes that fit into the neutropenic diet 🍉🌽🍳🍟

Mixed feelings

l must admit l have been feeling rather sorry for myself over the last couple of weeks.l can’t seem to see an end in sight. l want to wake up in the morning feeling refreshed after a good nights sleep, but my bloods have been at an all time low and the treatment over the past 18 months is taking its toll on my body and my mind. Then l hear of the sad events going on around us in the world and l have to remember there are so many people dealing with very traumatic losses of family members and l know l have so much to be grateful for. I think l need a really good cry to let out pent up emotions, as this is not happening naturally l will resort to my two movies that work every time !

In true English fashion we moved from cashmere jumpers to summer dresses almost overnight and are now enjoying true summer weather. As l was in hospital last summer l am discovering clothes l forgot l owned…… no need for shopping !

l am still having weekly transfusions….my visits are combined with a photo swop of sunflowers…some are beginning to bloom and although this is  a fun thing for us we have raised about one hundred pounds for leukaemia research. I know l have thanked blood donors before but l need to thank you again. I have been transfused well in excess of two hundred times, it could well be three hundred by now. Did you know that each transfusion costs the NHS at least three hundred pounds. If you want to know how it feels when you have has a transfusion, visualise how your plants look on a hot day before and after  you water them !

P.S my last blog showed Mary’s sunflower with a beautiful bloom but it was a spoof and l fell for it !




Taking Stock

After the news last week that left me feeling rather at a loss, l have spent a few days thinking about my progress or lack of progress. I need to put some questions together for my consultant, such as isn’t all this chemo not only destroying my bad cells but also Heathers healthy one’s ? You might have wondered such things yourself.
Just like our politics, everything takes unexpected twists and turns which we don’t completely understand. I won’t have much news for a couple of weeks so it’s back to the ” sunflower” growing competition. It would seem we are all having different levels of success, this has in fact become quite competitive in the day unit at Kingston Hospital ! We are having quite a lot of fun looking at the photos ….. maybe we might get a couple of weeks warmth so we actually see flowers 😉
So more photos and we will revisit soon.

Maureen plant shattered it’s pot, Mary has a flower and Joan’s sunflower seems to have grown a face…. Hum…… Mine is tall, about 7′ but sadly no flower yet and a bit skinny. I also seem to be looking after a few other sunflowers whilst friends are on holiday !