Another update from Hilary and Heather.

After another stay in Hospital Brenda was finally discharged on Friday 11 . Brenda is extremely weak and fatigued, managing to walk only a very short distance, as she says “she can’t believe how the smallest movement takes so much effort” .

It is an overwhelming fatigue . We are currently caring for her in her home.
On Sunday we took her out in the wheelchair to Bushy Park – it was a lovely summers evening and we all absorbed the peaceful surroundings .
Brenda is experiencing some nose bleeds. Today we are back in Kingston Hospital for platelet and blood transfusions, her bloods will need to be checked twice a week.
She is pleased to be home.

A short update

Bren was discharged home from Kings College Hospital on Tuesday after receiving treatment for infections including Pneumonia.
Unfortunately she had to be readmitted to her local Hospital on Wednesday evening following a significant nosebleed. Her cough had been very troublesome but l’m pleased to say that her current treatment has shown improvement. Her temperature has also spiked, she is receiving further antibiotics. She continues to need very regular platelet and blood transfusions. The plan currently is for Bren to be transferred back to Kings College Hospital.

Heather and Hilary

Every Day Brings Change

Another update from Heather as Bren has been too poorly to update her blog.
Bren remains in Hospital. In addition to her other infections she developed pneumonia – and had to cope with an very irritant dry cough for some days. With the help of the antibiotics and nebulisers this is now improving.

The treatment plan has changed. Bren was seen by the Doctors this morning and was told that there has been progression of her disease. Unfortunately the DLI infusion is currently not in the plan. Full dose Azacitidine chemotherapy is due to be given this week. She continues to require regular platelets, blood transfusions and fluids. Today a Picc line was put in – this will enable Bren to have all her blood tests and infusions through this line which will give her veins a rest. Her poor hands and arms are so bruised after needing such regular blood tests and infusions so although it is another line l think Bren and the nurses will be relieved!

Stopped in her tracks

Hello, just a short update from Heather.
Bren was admitted to Kings College Hospital ten days ago with an infection. She was hoping that it would be short stay but unfortunately it has turned out to be longer.
Bren has been ‘spiking’ high temperatures of 39c + so as you can imagine this has made her extremely fatigued. She is having intravenous antibiotics and regular platelet and blood transfusions plus intravenous fluids.
Professor Mufti visited Bren again this morning and the plan is that they are going to continue with the chemotherapy ( full dose azacitidine) and are going to talk to the transplant team re the possibility of giving another DLI. This is another infusion of my lymphocytes which are currently frozen.
Of course Bren’s main concern is that she is unable to tick off her sixty things ‘to do’ list this year!

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.

image
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 !