Feeling a lot better and getting around

Rosalind is getting ready to go to France for a few days with some friends. Her counts are now good enough to get normal insurance.

I went to the Fracture clinic and they took off my leg plaster from the cow fracas. They also re-checked the X Rays, and now believe that I had been luckier than I thought - ie there appears to be no break on re-examination. It had been the right thing to do to err on the side of caution. I now have a snazzy plastic boot leg protector on. This means that I can just about walk without crutches and even carry things - cool. So its ice packs on the heavily bruised parts of both legs - 20 minutes a time.

Meanwhile I had bloods, which showed I had used up a lot of hemoglobin and platelets repairing my bruised body, so the consultant decided not to give me the last two dose of Azacitadine and just let my body recover.

Cow tries to kill me and fails

I am feeling fine while in bed now

Basically last night a cow that had just had a calf needed to have her calf checked, mainly spraying the calf's umbilical cord.

I got very close and the mother was fine, gently mooing

In the last three feet she attacked me. I ran about 15 feet before the cow caught me and knocked me down. She then proceeded to stomp on me. Luckily I went into a prenatal shape and most of the damage was on my left leg and arm.

She stopped and went back to the calf, and I managed to crawl 15 feet or so further away before attempting to get up - this assured she did not attack again

I got up, like a shaky tree, and somehow went the extra 60 yards to the gate, where I collapsed until Barbara and Simon came to help. I really like adrenalin :-)

The ambulance arrived in minutes, they trussed me up against neck, back, torso etc possible damage

The right leg - which was hurt least

In the emergency ward

When at Derriford Hospital they did the usual checks, CT scan, various X rays and found I am really lucky having a hair line crack on my left lower leg, extensive bruising on that left leg and arm, and hoof prints / and bruises elsewhere, one tooth knocked out, and shock - nothing of any concern

The day after - she tried to attack my farm hands when she was moved
A nice calf though

Given my medical history with varicose veins and a DVT in the past plus my current treatments they feel I am at above average risk of a blood clot with a limb encased in plaster so they want me to have 3 days of subcutaneous jabs of anti clotting stuff

I do not feel up to having the azacitidine  today. I could probably hobble in, given a wheel chair, from tomorrow

The Fracture clinic are going to put a better cast on my leg on Wednesday this week.So the good news is that the cow did not kill me, I it was about time I learnt how to walk with crutches

The bad news is I got to bed at 7:00 in the morning

I must say that the emergency services were excellent

Chemo again all week

My counts are a bit lower than I am used to when starting a course - probably due to the full dose of chemo I got last time. They will check my bloods Wednesday and Friday, which is again not usual for me, just in case the white cells in particular take too much of a dive.

When I was first on Azacitadine this was the pattern 2 years ago.

Besides feeling tired, I feel fine though. Mind you we had a hard weekend

Saturday -

• Local children came around for pond dipping
• We brought all our sheep into housing so that they would not have wet wool on Monday morning
• And in the evening we went out to a big celebration of some friends 25th wedding anniversary - with loads of hog roast etc.

Sunday -

• We looked after the sheep
• We lost a two ducks and a hen to the fox
• We tidied the garage ad went to the municipal tip (which perhaps I should not have being Neutropenic)

Monday (today)

• We had shearers around and sheared all the adult sheep
• We also did their feet and gave them an MOT before finally putting them back out to grass

Things move fast when you are having fun

Rosalind and I had a clinic today

Her counts are excellent, which is important as it means you can then get insurance. Eg her company insists her Neutrophils are over 5. They no longer want chimersim test every three months -  six months will do. And they will wean her off acyclovir over time - ie use up what you have left. But she will stay on the antibiotics for ever

The transplant process for me rolls on at a pace. Anthony Nolan have found several potential donors and are already doing extra tests on a few. We should know about a match very soon. So assuming nothing goes pear shaped and the go ahead is given, I could be starting a transplant in September.

Donors have to be checked for detailed match, they have to be in very good medical shape, still willing and available when we need it. Plus we need to ask for enough for the transplant, and ideally some extra for topups if needed. There is also something to do with immunity from CNV which i need or they need or something - but that is for the consultants to figure out.

And I will have to have a have a detailed medical examination e.g lungs, heart, etc. and then they tell me all the risks in great detail, and then I have to agree or not.

Some more good news. I will not be the first patient in Plymouth eith MDS to have a transplant in the new ward - and they are very comfortable about the protocol they will follow

Meanwhile we will be keeping the blasts down with full dose chemo starting next Monday for 7 days.

So some very positive progress, even if I have to take a very deep breath.

The new Cancer Ward in which I might have a transplant

This new ward is fantastic as it has all the latest technology, space, good design and lots of goodies for patients. So if I have to have a transplant, at least I will be in an excellent ward with great staff - supported by Kings, using Skype for example.

Individual room showing corridor

Until recently MDS patients needing an unrelated donor transplant from places like Devon and Cornwall have tended to go to a Centre of Excellence such as Kings College Hospital London, as did Rosalind. This can be a logistics nightmare being very costly and adds to the stress level

Derriford hospital, run by the Plymouth Hospitals NHS Trust, has had a haematology transplant ward for many years – Birch Ward, but the facility level was only sufficient to enable you to have your own stem cells back, or those of a sibling. Your own stem cells are not an option for MDS patients. I have been attending there for several years, going to Kings for occasional chats with the Prof.

Over the last seven years Derriford Hospital has been working towards creating a new unit, Bracken Ward, for unrelated donor bone marrow transplants.  A charity called the PDLF – Plymouth and District Leukaemia Fund - has raised hundreds of thousands of pounds to add those extras that the NHS could not afford and supplement this new high-tech transplant ward. We managed to raise a few thousand.

In parallel, staff passed all the training hurdles to be approved to do unrelated transplants and started doing them in the adjacent Birch Ward – now also being refurbished for day cases.

The new ward opened for business a few weeks ago to rave reviews by patients, carers and staff.

The success of this venture is down to many things, in particular excellent planners, the dedicated team of Consultants, nurses and other staff who designed the ward and the PDLF. A small group of patients and carers, including Rosalind and myself,  were asked to provide input and feedback on every part of the development.

Some of the criteria were

Fantastic bio-security - the individual rooms have their own air-conditioning, filtration units and special barrier doors to minimise risk of airborne infections.Special attention to enable each room to be kept clinically spotless at all times.

Showing entrance to ensuite bathroom

Comfort. The beds are great, and the patient and carers both have nice looking comfortable chairs. These were tested out by patients and carers before being bought. Tables that fit over the bed were carefully selected for ease of use, appearance and bio-security.  And the lighting can be gentle, normal or functional as needed.

Each room has been designed to enable patients to stay there without ‘climbing up the wall’. They are spacious and cheerfully decorated. Colour schemes were tested out with patients and carers, including those feeling sick when colours and smells take on a whole new meaning. Consideration was given to what patients could see from their bed, from their chairs and through the windows. If you have ever been cooped up in a small room for weeks or even months you will understand.

Entertainment and technology. High-end easy-to-use smart televisions for watching TV, displaying films, slides shows, providing free Internet access, etc.  Patients can bring their own family photos or videos to display on the screen and are encouraged to use phones, IPads or other devices to keep in touch with family or friends through things like Skype. A school in Tavistock is adding to the photographic collection of scenic views which can be watched on a gently changing picture show.

Spacious en-suite bathrooms

Large fully equipped en-suite bathrooms for each room are a major bonus. If you feel rubbish, you might need facilities quickly, with the ability to have them cleaned thoroughly very easily.

Transparent Door

Switched back to opaque

Patients may click a switch from their bed to turn the glass door from fully transparent to enable them to see what is going on outside. Or back to opaque when they want to be left alone. Consultants and nurses can also switch it on and off from outside to see how you are.

Decoration – each room has its own special art work. Some of the rooms were designed especially for young patients with a more appropriate look and feel, and more Hi Tech facilities to meet the needs of the modern Internet savvy person.

Functionality – all the mod technical cons and backup you need in a state of the art transplant ward.

Nurses Control Centre

Schematic showing 10 transplant rooms entered via dual robing areas

I will let you know what it is like as a patient at some future posting - the earliest would be November is my guess

Richard having to have a Bone Marrow Transplant goes from 50% to 80% likelihood

At a meeting with the Prof in Kings yesterday, he reviewed what my Plymouth Consultant and I had decided and fully agreed with going full dose straight away. This was after my bone marrow results had shown the blasts go from 3% to 7%, showing that the MDS had 'progressed' again. (Progressed means gets worse !)

 

We spent a lot of time discussing a possible bone marrow / stem cell transplant, which has to be from an unrelated donor. This will be my decision - but he thinks that the time is nearly on us to make the decision. He said only a handful of people have gone beyond where I am with the Azacitadine, that I have had two years with good quality of life and that even on a higher dose I might not last more that 12 to 24 months on Azacitidine alone.

He has recommended full dose for 7 days at 4 weekly intervals for two tranches, followed by a bone marrow test, and then clinic with Prof on 19th August - probably decision day if a donor has been found

Out of interest the longest anyone has been kept going on Azacitidine is 8 1/2 years and the vice chairman of the UK MDS group (a professor of medicine himself) has been on it for 5 years now. 

Prof Mufti said I was in great shape physically for a transplant, and wholly agreed with expediting possible donors. Statistically there is a basic 38 % chance of me surviving two years from a transplant, but I have the attitude, physical condition and this great new ward in Plymouth all of which increase my chances of success. He is comfortable having the transplant in either Plymouth or Kings.

If we go ahead he would probably use Azacitidine and heavy duty chemo for pre-conditioning.

The Prof has offered to help Plymouth if I have the transplant there

A. Plymouth can send someone up for special training, which they do give often

B. And hands on support by telephone, email and Skype when needed.

He said King's protocols have some nuances compared to other centres for MDS, e.g. filtering T cells out of the donor transplant. Plus they have some special things they do post transplant, and can even now use Azacitidine afterwards! He is happy to share everything with Plymouth.

 

He was happy with the blood results from yesterday, as an indication the drug is still working. He expects the figures to look better 10 days from now.

So Hey Ho - I have never had a transplant and now I have a chance. It beats doing nothing!
Meanwhile I will get even fitter and plan how to manage things around the farm if I have to go through this several month trauma. The good side is, it is potentially a cure.

Meanwhile over the weekend staying with my son and his wife. We saw their new house which is part way through construction. We all then had a lovely time meeting up with old friends from London, went for a boat trip down the Thames, and all sorts of things in lovely weather. 

My last personal assistant who lives in San Francisco managed to meet up with us for 30 minutes while we past in Paddington Train Station - seen here in the photo I took 2 minutes before she got off the Heathrow Express.