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.
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 🍉🌽🍳🍟
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 !
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 !
I had an appointment with my consultant this week and the results of my bone marrow test. I spent the night before with thoughts going through my head preparing
me for all sorts of scenarios…. good and bad.
The explanation was very complex in haematology language, the easiest way for me to sum up the position is that although things don’t seem to have deteriorated neither has there been an impactful improvement.
The solution is not one l wanted to hear…. Yet more chemo…. Round 8. This will be given in injection form once again as an out patient. My consultant knew l would not find this welcome news. After consistent chemo for 15 months my body is feeling weaker and l sometimes wonder if l will ever get out of this circle.
I will admit that l feel a little jealous of the featured stories about stem cell transplant patients on TV who are up and running marathons, bike races within a few months of transplant but those are negative moments which pass, l certainly cannot begrudge anyone’s success stories. I have to bring myself back to the reality of my own situation, the doctors are still working hard on achieving a good result, so l must hold onto that.
I cannot get off this roundabout.To do so would be far more painful not to mention all of the doctors and nurses time and a large slice of NHS funding going to waste.
I have been given three weeks or so before starting the next round in order to have a bit of a break and build myself up !
In the meantime it’s back to weekly blood checks and transfusions.
I know l sound a little fed up and yes …. I would like to be putting anything but hospital appointments in my diary, as they say…..this to will pass !
On a much happier note, sunflowers are really growing. So photos show the different stages of sunflower growing.
We have :
Maureen – our volunteer in the Kingston Haematology day unit
Lesley – our specialist nurse, Kingston Hospital.
Eva, Blake and Finley Hilary’s grandchildren oh and Milo the dog!
There will be more photos as we progress !
Just a quick update ! I was discharged on Monday and arrived home just in time to
watch England playing in Euro 16. So England got knocked out, that wasn’t meant to happen…….and then the politics turned upside down …. What on earth is going on 🤔
I resumed my checks at Kingston and back to Kings next week.
We are gearing up to a “mid-season” sunflower check to see how my competitors are getting on.
I will report more soon, but just wanted to let you know the infection is well under control. I was two days away from celebrating six months free of overnight stays in hospital.
I was at Kingston hospital today and needed two units of blood, oh l missed that Hickman line….the cannula’s did not go in easily ….. my veins were a little weak.
I am going to have to increase my water intake on these days and pump them up.
There is a positive. Because one had to keep the dressing dry and clean on the Hickman, l found it impossible to have anything except a very shallow bath or a very quick shower. Until my consultant decides what I will need as a replacement, l can actually have a jolly good relaxing soak. I have also been unable to wear a neckless and it has been necessary to wear scarfs to protect the line from being rubbed particularly from seat belts etc.
So I am having a little little relief in this area.
I spent three days in Kingston Hospital in a side room of the acute assessment ward.
The staff were lovely but l couldn’t help but notice the difference of being in a specialist hospital. Kingston made me very welcome and looked after me very well but l needed to get to Kings where as a transplant patient l could be monitored. I was on the “bed list” and meanwhile my Hickman line was removed as it could have been the source of the infection. I have had this Hickman line in for 14 months and without a doubt it has saved the use of needles, cannula’s etc. I felt quite bereft.
I guess I will have something else fitted but not just yet – oh to be transfusion independent.
I was eventually transferred to Kings college hospital on Wednesday evening. As we drove up to the hospital a massive storm erupted right overhead. Thunder and lightening, a deluge of rain. The nice ambulance driver managed to get me into the hospital without getting my P.J’s wet and l still don’t know how he did it. As it happens it was just as well as the next day the railways were in a mess and no one could get up so l didn’t have many supplies. I took to wearing a very tasteful NHS
The infection is now under control and l should get to go home at the beginning of the week. My room has been quite busy having chats with the staff who nursed me for 9 months last year. My test was remembering everyone’s name but strangely it was like l had never been away. I remembered names, routines … even the menu !
I am back to a room with a window overlooking a brick wall and no phone signal.
It’s not so bad this time because l knew what to expect.
It is a strange world l have lived in for the past 18 months. Hospitals have become the norm, in fact Hilary says l treat it like a business 🤔 l need to get home soon as my sunflowers will probably need attention.
So thank you for your messages, thoughts and prayers.