A quick check up before I start

I popped into Derriford for a consultation and check up. My blood tests were fine, ferritin down to 141 - which is great. They took another pint of blood, which will be the last for a long time, so it will probably bring the level down to around 100 to enable me to have blood transfusions if I need them.

As far as we know I start treatment on Monday - they have just to make sure that the drug that was ordered has actually arrived.

During treatment if I get a fever they will have me in hospital like a shot

My list to take in is:

Thermometer

Antibiotics

Cod liver oil tablets

Pyjamas

Slip on shoes

Change of clothes / day clothes

Laptop + Charger + Vodaphone roving Internet modem

Iphone + Charger + connector

Electric Shaver + Charger (wet shaving not a good idea in case you cut your self)

Wash kit

Toothbrush / paste (Not electric one, as they could cause bleeding)

Wipes and gel

Books

Pad / pens

Playing Cards

Money

Sweets

Lucozade

Moisturiser
Music and videos on iphone

Photo Magazines – I can spend time editing photographs on my PC and improving our family photo album

Pillow

Fruit

I had an extra blood test on Monday that was sent to the Anthony Nolan Trust t see if there might be an unrelated donor available.

Rosalind hits another milestone, and Richard prepares for treatment

Rosalind went to see her consultant in Plymouth today. She was not only told she was doing really well, but they also went on to discuss things like:

• She can go on a plane!
• She can go swimming!
• Having her childhood vaccinations again (Yep- you don't really think about them do you?)
• And even dying her hair - which us lads might not understand but ...

All her tests came back well, but she has to wait for her chimerism test which shows how well the top-ups have worked.

Richard (me) is preparing for his first course of Azacitidine. This will be the first use of Azacitidine in Devon and probably the South West for treating MDS. So there is :

• Having normal blood tests and one last venesection
• Special bood test (again) to send to Anthony Nolan to check for potential unrelated donor
• Getting teeth checked and cleaned (to stop minor infection becoming a threat and because he will not be able to go to the dentist again for a long time)
• Getting new glasses so he can work, read and watch day-time TV (What a thought)
• Preparing very clean rooms away from the 'farming' side of their home
• Starting to stock up on super neurtopoenic food and drink eg pasteurised yogurts, Bottled mineral water with gas, long life orange juice
  
• And getting fitter by walking around the farm
• And keeping motivated and positive
  

Meanwhile we are down sizing the farm, selling animals etc to make recovery manageable.

Richard and Barbara had a great holiday in Iceland and came back relaxed. A few more photos below

The Small Geyser in Southern Iceland

The third largest Waterfall we saw

Hot springs in the evening sun

Stuck in the fog off near the Arctic Circle looking for whales

Holiday before treatment

It looks like I am going to start with Azacitidine on 4th July at Plymouth - still a few loose ends to sort out. So its nice to get away for a few days. On our first full day in Iceland we went up to the top of this fabulous church and took some photos. We wandered around the port of Reykjavik and then had dinner with my son Simon and Sari - who live here. Barbara and I must have walked about 8 or 9 miles - its good to get fit before the treatment starts.

Things move on at a pace

Rosalind went for a check up at Derriford and is fine. They do not want to see her again for 5 weeks, however she will go to Kings in three weeks to see how the top-up is working and possibly have more.

My situation is clarifying fast.

Kings have decided to  start me on azacitidine very soon - probably towards the end of the month. This may be partly done in Kings and / or at Derriford. Its all outpatient stuff - basically a week of daily treatment, then no treatment for three weeks. Repeated for months or even years if it works.

They are also going to start a search for a donor for a potential transplant. This is doubly good news as it means that they think I am fit enough and have the right attitude (critical) to get through a transplant, and if the azacitidine does not work it is my next option.

Meanwhile Derriford are keen to do the outpatient work, and possibly a subsequent transplant, as they are a long way through becoming certified to do so.
Derriford have already taken a blood sample and have just got back from the labs all my tissue type details with which they can check for a match. This will be sent to Kings in the next few days. Its great to see the two Hospitals working closely together. I might finish up being one of the first patients at Derriford to have azacitidine and later even a non-related donor transplant if that all works out. They are also a very good team and I would trust them to do a great job (as well as the team at Kings - which is excellent)

Today I had a blood test and my neutrophils have gone back up to .7, which is great. So Barbara and I can go to Iceland for a ten day holiday starting next week. With our son Simon and Sari who live there, we hope to see the sights, go whale watching and not get caught in a volcanic plume.

Derriford also took another venesection (blood letting) to get my iron content down. It had not come down as much as I expected - but then I did indulge in a nice piece of our beef recently and a leg of out delicious rare breed lamb, with red wine. The consultant said I could indulge a bit, but I guess its back to the safe pork, fish, chicken and vegetarian style regimes.

Meanwhile we are downsizing our flock of sheep from ~ 400 to say 40. So if you know anyone that could give a few a good home let me know. We are also downsizing the herd of pedigree Angus and removing a few other distractions that we do not need while we get through all this.

Ros is now well enough to be helping me, much as we helped her prior to her treatment. This is great for me, and actually is helping her recovery by giving her a real focus. Robert and Simon and the rest of the family are also being very supportive and helpful on planning how we deal with this. Not to mention loads of friends both her and in the States who keep my enthusiasm going.