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.

 

Remember to take your tablets

A bit of a boo boo 

I had my last injections of azacitidine today. Beforehand I had bloods taken, and I said to Barbara 'Do not forget to remind me to take my anti- sickness tablet'

Well we both forgot. And the nurse is supposed to ask me - but I had never forgotten before 

So a few hours after, Barbara served me a nice meal - which I just couldn't face. A few minutes later I was very sick

That will teach me to forget

Afterwards I took a tablet, two cups of weak tea, a two pieces of slightly burnt toast ( carbon absorbs grot)

I am feeling much better now

Plan A and B in action

What a shame to have to go into hospital on such a beautiful day.

Roz is doing well, having been running a ceramics project all day Monday at a local school.

I am on plan A - which is basically up the Azacitadine back to full dose each day this week and hope that gets the MDS / blasts in my bone marrow back under control. Certainly I can feel the extra effect of the chemo, as I have had to rest more than on half dose.

I also have a clinic booked for a week on Monday to see the Professor personally, at his request.

Plan B is also in action.  Today they took an extra lot of blood to enable the Anthony Nolan Trust to find a stem cell donor match, in case I need it for a bone marrow transplant.

If you want to donate stem cells it is very easy these days. Go to the Anthony Nolan website to find out how.

 http://www.anthonynolan.org/What-you-can-do/save-a-life.aspx 

Devon County Show success

We had a good day at the Devon County Show - the first show in the country

We only showed 4 sheep - two Manx and two Hebrideans

We got a second in the young rams, a second in the young ewes, and a first in the senior rams with Apollo. He then went on to beat the other males in the run off, and then to beat the top female to win Champion in our Rare Primitive breed class. He won last year as well as a one year old.

 

Apollo seen here with me and my silly sun hat

The weather was ideal - not too hot and not too cool

The die is cast for the next few weeks

I had a clinic today, and Roz came along to keep me company as short term big decision were needed, and Barbara was not feeling well.

Even though my blasts had gone up a lot, Kings had recommended no change to the amount or frequency of the chemo. My local consultant and I were not happy with this. Last time the blast got to this level they went critical a few weeks later

The dilemma 

1. Was the chemo causing the problem with the blasts? And I need to come off it!

2. Or was the dose of chemo too low now? And I need more!

Both have happened with other patients

After discussion and reviewing my previous tolerance to the chemo we have gone for a plan A.

Plan A is double the dose back to the maximum next week, for 5 days, and then monitor the effect. At some time soon I will then have another bone marrow test to monitor the blast which cannot be directly monitored by blood tests. In fact my blood test today were pretty good! Much better than a couple of weeks ago.

And then we thought " what happens if it does not work? "

There are few options for my type of MDS. There are some new experimental drugs - but we do not live near a research centre, and the NHS would not now pay for me to have that done in Kings, and Kings do not seem to take private patients from this country.

So a "plan B" would be an unrelated bone marrow transplant in Plymouth!

So we have decided to approach Anthony Nolan etc and see if there is a match stem cell / bone marrow match. This might takes weeks or months, or maybe there is no match. But if I need it we had better start looking soon, said my consultant.

The good news is that she obviously thinks that my body is capable of taking it. That having a transplant close to home and friends improves your chances of success. And Plymouth has just opened a start of the art new transplant ward, and the staff are up to speed on these more complex transplants. The downside is the lack of experience, relatively, on unrelated donor transplants with MDS - but we have a plan to gain that experience and reduce the risk. 

At the end of the day, given the amazing facilities and access to world leading protocols, surviving a transplant is mainly to do with

Not catching an infection

And not having a rejection

So we hope and expect plan A to work, but are covering ourselves with plan B.

The discussion with Kings will probably happen in a couple of weeks, to confirm, refine or change our plans

A few lessons

Do not wholly trust blood counts to monitor the affect of this specific chemo

Do have a bone marrow test regularly to get the real picture

Trust your instincts - if you feel a bit worse, it is probably because you are

Open, informed a frank discussions really pay dividends.

I am very happy with this direction, and can now get back to winning my small section of the Devon County Show sheep section. I delivered the animals this evening, set most things up and our competition starts at 2:30 tomorrow. Wish me luck.

A little progress

My consultant in Plymouth is trying to contact the Prof in Kings - but he is very busy this week.

Meanwhile she and I agreed to bring forward my next course of Azacitidine from 5 weeks gap to 4 weeks, subject to a blood test on Wednesday.

So on Monday after the Devon County Agricultural Show this Thurs / Fri and Sat ( do come if around) I will get my half dose chemo.

We will be showing two Manx and two Hebridean rare sheep. Apollo our top ram, is our best chance of winning.

Photo is of similar Manx young ewes

Bone Marrow results not brilliant

I got my results this afternoon. They showed my Blasts had gone back up to 7% diagnosed as RAEB I again, which is not good. If you remember it was when they went over 10% that i had to start treatment. So the good news is that it is not RAEB II.

The consultant in Kings recommended carrying on as before, but i will ask my local consultant if we should increase the dose a tad, reduce the time between treatments

Otherwise i have a throat virus, temperature and cold - so feeling a bit rubbish really.

We are training up two rams and shearling ewes to take to the Devon County Show next week

Bone Marrow test and Clinic at Kings

Last Monday I went to Kings for a bone marrow test. This was more interesting than normal as the Dr took two extra lots of aspirate - the liquid inside your bone marrow, and then an extra chip or two of the actual bone. This was done all under local anaesthetic - which he topped up a couple of times as the process took around 45 minutes, rather than the normal 20 minutes. It does feel strange having the aspirate sucked out.

Bone marrow test samples

I will not get the results from the bone marrow test for a couple of weeks. One extra sample will be for some special genetic tests, to see if they can identify any genes that might be causing a hereditary problem. The rest is for a research project - so loads of forms to sign.

I had a blood test, which showed my Platelets had improved and Neutrophils dropped a bit - but no worries. At the clinic they gave the go ahead for the next course of Azacitadine, which I started yesterday. They confirmed the frequency and dose is OK, but will review my results in a few days time with the Plymouth consultant.

MDS Support Group

I was in Kings last Monday and luckily bumped into Sophie who runs the group for Prof Mufti

If you have MDS and you are caring for someone who has it in the UK and have not joined the MDS Support group I would advise you to give Sophie a ring.
Their website is http://www.mdspatientsupport.org.uk/ 

Richard and Sophie

Sophie and I are hoping to run a series of articles about the opening of a New Heamotology ward in Plymouth - enebling the first un-related donor transplants in that part of the South West. Brilliant!

We met the prof briefly, who asked after me and Roz.

Prof Mufti

Quick update

Rosalind had a chimerism test done last week, and got her results yesterday - they were very good being approx the same as last time. Overall her donor cells represent 99% - which is very acceptable. We expect that she will now leave the monthly transplant clinic and go to a less frequent monitoring clinic. Mind you she has had a bad cold all week. I guess we need some warm weather.

I had an extra blood test yesterday, and it showed that my immune system had come back up to a more acceptable level. My platelets have gradually gone down a bit over the last few weeks so I will mention that at Kings when I go for a bone marrow biopsy in a few weeks - they can check such details much better from this analysis.

I also saw a dermatologist, who has prescribed a more focussed steroid cream which is already working well on the rash on my elbow.

On the down side Barbara and I spent most of the day doing accounts! Roll on Easter and lambing.

Minor glitch

When I got my blood results i found a few minor issues
1. I am neutropenic again, only just, but a pain. This is the first time for 8 or 9 months
2. My platelets have gone down by a lot in the past 4 weeks - so my blood will not clot as well - so no cutting my arm with a chainsaw
3. The rash I have had for three months has spread and has been getting worse.
4. And I have felt a bit more tired this last week than normal
So another blood test in few days to see how things are going

The good news is that
I have been working hard
A new steroid cream seems to be getting to grips with the rash
I feel OK in myself
Lambing for real starts at the end of the week
The new bio-mass boiler should start working at the end of this week or start of next
I will be having a bone marrow biopsy in 4 weeks at Kings, which is the definitive test

Meanwhile, lots to do

Roz is doing well. She ran a very successful felt training day at a local school last week

Regards to all our followers

Another week of chemo passed OK

Today was a bit different at the Hospital. I arrived early for blood tests, dropped the samples off in the lab, and went for a cup of tea. Within minutes the fire alarm went off and fire wardens scurried around keeping us all behind quickly erected barriers, the fire brigade arrived, ...

And of course all the patients and visitors were offering useful advice.

40 minutes later the all clear was given and I could go for my final injection.

In general it has been a good week. Most of the new biomass boiler is installed
The Tarmac experts redid the trench we had dug out for the pipes, and we jit managed to be ready for holiday guests - and all in the pouring rain

And our cattle passed their TB test

Clinic again

Roz and I are having adjacent clinics tommorow so will each buddy for the other. I then expect to start my 20th chemo round next week

Roz is running a felt craft workshop at our place on Saturday.

We have started lambing, have just passed our organic annual inspection and are half way through installing a bio mass boiler for the barn complex and farm house

I find I can do a lot more physical work before I need a rest now - I think pushing myself is really helping

Next time I will hit the magic 20

I had my 19th lot of Azacitadine a couple of weeks ago. I had to go back to Ondansotron as an anti-sickness tablet again as the others were making me physically sick. No worries, other than I am 67 tomorrow! But then I was not sure I was going to live this long two or three years ago.

Still one day at a time, but now with a sneaky bit of planning a few months ahead.

I am feeling well. I can do a 10 hour day, as long as only part is physical. I have been on the digger repairing fields damaged by flooding and idiots driving on them in the wet and creating deep ruts. Our new bio-mass wood burner gets installed this coming week - which is exciting. I have developed a new 'fluid' version of a web site for friends in a Farm Holiday Cooperative - this works on large screens right down to phones . Try resizing the browser window down to very narrow, or using on a phone. It was fun doing some computing again. I have my main website to do next, but am waiting for some new clever fluid indexing software that can manage the scale of my website.

Portlands - with lovely wool

We are about to start lambing in a few days. Three of our new rare Portland sheep should be first, then 76 Manx and Heb sheep, then the last Portland. They have all scanned 'in lamb' .

Easter egg cosies

Lovely vases

And Roz is doing very well - working hard. She has setup a whole lot of Felt Workshops both at our place and hers, and has some teaching work and other bits. She is also cleaning the holiday cottage for us - now that is an achievement given her lack of immune system18 months ago.

A bit more normallity - scary but gooood

As we are both feeling so much better, we are able to take on a few more things. The current project is to try and get our self catering cottage up to speed. Having had to close both cottages three years ago when we were diagnosed with MDS, we have started marketing just one of them - Swallow Cottage.

In the past three years the Internet has changed a lot. I can do simple blogs and full screen websites. But now I find for modern marketing you have to master Facebook, Twitter, smart phone based web design, and the latest ways of getting Google to notice you. Luckily Roz has been using Facebook for a few months, so she is managing the cottage Facebook site. And I am getting some help from friends on the rest.

Tomorrow we are reloading the names and addresses of previous guests for a mail shot.

Our first guests since we reopened are coming in a week, so we also have some last things to do for that. We had the AA rate the cottage as **** but we were told to put in an LED TV and docking station for smart phones! My, how things have changed.

In addition Roz and her friend are trying to organise some dates to run felt making, jewellery or even ceramics workshops here on the farm.

Getting back to doing more is great, but a little scary at times. We get brought back down to Earth when we have clinics, or I have my 5 weekly bout of chemo. My 18 th bout finished last Tuesday and was the least problematical, touch wood, so hopefully they we will stay like that.