Day 13

Some very good news. When I got my blood count results today I was delighted to find that my total white cells are at 1.7 and my neutrophils are at 0.7. My consultant's response was 'Yessssss!!!!!' She says they will start to change my medications from intravenous to by mouth over the next several days, then if there are no setbacks I will be able to go home in a week to 10 days time.

Apparently quite a few transplant patients develop a bit of gout during their treatment, so when you have a gout problem to start off with it can be more tricky to manage and yours truly gets gout. My right foot doesn't look too pretty at the moment and is very painful. Luckily my donor's stem cells have produced loads of platelets so I can take quite a high dose of a non-steroidal anti-inflammatory drug, ibuprofen in my case. It isn't fully effective yet but should improve over time.

Another good sign of recovery is regaining a bit of appetite. I even managed a small cooked breakfast this morning. I assume my new neutrophils are starting to do a good job as I haven't had a fever now for 36 hours. Barbara still comes in and bosses me to make sure I have a shower every day (or if not Barbara, my daughter does the bossing). It is really tiring but I feel so much better after showering.

And yet another encouraging sign is getting a bit of concentration back. I was even able to read 5 or 6 pages from 'The Lord of the Rings'. Rosalind brought the grand children in to hospital and because my counts have improved they were allowed in to see me in my isolation room.

 I have had several emails and messages in the last week from other MDS patients and their carers and I would like to thank them very much for contacting me and for their encouragement. I hope this blog will be useful for them as they go forward on their own journeys. On our journey Roz and I have found several sources of help and information including the MDS Foundation, the UK MDS support group  (our first port of call), Macmillan Cancer Support, Leukaemia and Lymphoma Research

Of course there will be daily trips back to the day case unit for quite a time after I get to go home, but I will be able to sleep in my own bed and my dogs, Josh especially, will be so pleased to have me home.

Hair today

I had my hair sheared to level zero on the clippers the other day, as you know. And it is a lot thinner than before 

But what is weird is that my remaining hair has definitely grown !!

Day 12

On day 10, I was delighted to hear that my platelets had gone up so this is the first indication that the new stem cells are doing their thing. On the down side I had a couple of temperature spikes and the usual runs. Simon and Jaanika visited for the last time before returning to Estonia and Robert and Jessica came in later.

My sons were delighted that I ha shaved my head, and looked more like they did - until they realised that mine would go back

Day 11 even more platelets, haemoglobin  level stabilizing at 10.8 and the first neutrophils turned up - not a lot, but measurable at 0.04 (as I said, not many!) - and another day of temperature spikes. Robert and Jessica visited before heading back to London before the predicted bad storm caused travel disruption. Rosalind was in early then off to sort out sandbags, Barbara came in later after sorting out various lines of sandbags around farm buildings.

Day 12 - high temperatures again (38.7 C) It was great seeing my consultant again, as she had been off ill for a week. She thought I was doing really well. My blood results today gave total white count at 1 with neutrophils at 0.2. Good stuff these new cells. 

When the ward visit came around, one prof, one consultant, and registrar , the prof said that was not a high temperature in our terms, and that I am doing well

Day 9

I woke up this morning with a temperature of 37.8c. Juat to make sure I asked them to check my other ear with the temperature ear probes that they use and it was showing 38c. So we discarded that measurement as I had been lying on that ear. They were obviously worried about any infection, but luckily within an hour my temperature has reverted to normal.

Just to be on the safe side the doctor wants to check out my lungs, in case I had a slight lung infection. When Rosalind had to do this they put masks and gloves on her and wheeled her down to the basement of kings hospital. Instead here a charming operative turned up with a portable x-ray machine and took my x-ray within two or three minutes. But Barbara is running a temperature so she was not able to come in to see me today. My son simon came in and after the usual quick update,  we did some important things... That is we watched several episodes of blackadder.

I have three slight rashes, one on my face, one on my chest, and one on my groin. My sons are happy though, as my hair is falling out now by the bunch load. I will get them to shave it all off as soon as they can so that I do not wake up breathing in my own hair. Pictures to come...

The transplant nurse popped in and was hopeful that I might be out in the next ten to twelve days... But who knows. 

Day 7

My Platelets are at 4 so I am getting some later

HB at 10.4, so will get blood tommorrow or day after

All very new to me - it just shows how important it is to have loads of folks giving blood regularly

The Dr says I am doing well. My biggest problems at the moment are no energy and feeling bitterly cold all the time

Mind you at this stage patients do not eat much

Day 6 after transplant

Feeling not too bad after a good nights sleep, albeit getting up once an hour to go to the loo and stretch a bit

One of the problems that everyone gets to a degree is fluid retention form the volume of liquids being pumped in and because some of the capilleries leak fluid a bit. This my right foot. I have always prided myself on my good looking feet - no longer! You can see the swelling around the ankle in particular. 

The big toe on this foot is suffering as well. I occasionally suffer with gout - which is usually accompananied by shouts of 'too much red wine and red meat' . If you have never had it, it is hard to explain the intensitity of pain from an attack. The treatments have complications such as:

Suppress stem cell production

Or inhibit the anti rejection drugs 

So my consultant had figured out a strategy to control my gout through the transplant by very careful use of one drug, varying the dosage carefully. Some patients have the same drug for a while pre-transplant and are then taken off it. So by accident I was also taken of it, and then had a gout attack. Normal pain killers do not work, so we used an ice pack to dull the pain

Apart from that I feel week and rough but I could be a lot worse

I'll be in touch

Day 3 after transplant

All things considered the doctor says I am doing well, mainly because I haven't had an elevated temperature or infection yet. However, I will have been on drips for 9 hours by supper time. These include K and Mg and the usual range of anti rejection, antiviral, anti fungal and anti sickness drugs. And surprise, surprise I am still retaining too much fluid so my feet, legs and trunk are all a bit bloated. So I am also having diuretics to keep me seeing plenty. Coffee is actually diuretic but I can't face that at the moment. Currently my platelets are at 30, my neutrophils are zilch but my haemoglobin is still quite reasonable so I haven't needed a blood transfusion yet. My concentration level isn't very high and my conversation level is boring (nothing new there then).

Roz has been busy all day running a felting course at the farm.

Day plus 1

I do not feel brilliant, but am told be the doctors that I am doing really well

I have had bed sores, so they got me a new mattress with a ciculatong air system, that provides less direct pressure when you move around - elbows feet and bum. It also gently massages you - you cannot feel it, but it seems to work 

Apart from that I was able to get up for while, manage nausea mainly, and catch up on some sleep

Day 0 - the stem cells are in

The last couple of days have been rough, although I am told I got off reasonably lightly compared to some people. Side effects included nausea, the runs, interesting hot flushes and slight hallucinations when trying to sleep. A bit like experiencing holiday excesses and the menopause with a bad trip thrown in. I had vast amounts of fluid given by drip over a 24 hour period which meant a visit to the loo every 45 minutes or so during that period.

Today I feel a lot better and am even eating a little bit of food again. (Just off for another quick visit to the loo.) I have had more anti- rejection drugs and antiviral to add to the antifungal and antibiotics I have been on already. Just after 1 o'clock  2 bags of stem cells arrived from my donor. They didn't harvest quite enough from my donor on the first (I am rather a big bloke) so they took a second harvest the next day. Now the magic begins. This is when the stem cells circulating in my blood migrate to the bone marrow and start producing new and healthy blood cells. 

Ros and I, other other transplant patients cannot thank the donors more - if you are not a donor but are in good enough health, please sign up.

End of day - feeling a lot better

Well that was a horrendous three hours, the second half of the chemo

Trying to remember to breathe, whenody shivering, temperature, and generally feeling crap. The brought my tea, which I sent away, other than some jelly

It a few hours later. I slept a lot and now feel a lot better, and have had drinks and I am now tucking into some toast . 

Day -3 starting Campath

Yesterday was a relatively straight forward day. Barbara wasn't in because she had a sniffle. I did lots of exercise and worked on remodelling the Fowlescome website. The lunch was surprisingly OK

 Today they are hitting me with the heavy stuff so I don't think I will be very productive today. I packed a good lunch in - I may not feel like eating much later. I wouldn't recommend this as a way to lose weight.

 

Day -6 and -5

Well I am feeling very well. I have had two days of Fludarabine out of a course of five days. It has already hammered my Nuetrophils quite well, having gone down to .3 from around .8 in just one day - powerful stuff. No side effects, which is good

The food is very acceptable. This is breakfast, so you will note that I have not yet lost my appetite. Tonight I did not fancy any of the main courses, so they let you choose from the hospital restaurant menu
Yesterday was very busy. I have not even opened a book or watched a DVD yet. They managed to get the Xbox attched to the TV working, so I can watch DVDs later - we nearly got it working on our own (we had to find a controller that had disappeared, new batteries, push the connectors in better) but it took a 18 year old on the ward to get the controller to talk to the box!! Then I had great service from the nurses, doctors, cleaners, catering and other staff - they are a very professional, dedicated and friendly team. Ros came in in the afternoon with a matching pillow and blanket (Tesco's best at £10) for my bed - I get cold for some reason just for an hour or so after going to sleep

As I am confined to the room mainly they have set me up an entire gym, which I can use while enjoying the view

My Gym

The view is over the hospital roof and its air con ducts

Mind you its a lovely day out there. The construction work with the crane is quite interesting. If you look very very carefully there is one plant on the roof in the left hand photo above. There is a debate about trying to mask some of the ducting with low flowers - even if artificial. In the distance there are trees and blue sky - so no complaints. When Ros was in Kings, the view on one occasion was of a wall about ten feet away, and the second they had boarded up the windows as there was construction work right outside about 20 feet below, and the noise was of drilling and hammering etc. But you can get used to anything

I think Ros is enjoying doing to me what I did to her - the nagging is to come, which is when I will feel rubbish and need pushing to eat, exercise and just cope. It has to be done, and the nurses have already told me they will switch to nag mode in a few days - but hopefully that phase will only last 2 or 3 days

So, so far so good

And thanks to everyone who has sent best wishes via the blog, email, phone or snail mail. It is much appreciated

Richard

Day - 7 extras

Here are a couple more photos that would not upload before

Day - 7

Well I am admitted. The ward facilities are fantastic. The room is large with a great ensuite

The chair seems fine, the bed is a bit short for me, the table is great as it slots under bed or in front of the chair, it can be tilted to give a good angle for your laptop.

The smart tv and X box  appear great. The tv and bbc iplayer work well, but the X box beat my skills, and those of my grandchildren to get it to work. Also most of the cool facilities of the Smart TV require an internet connection, which nobody seems to have make work!

The doctors and nurses are excellent. I have had my line cleaned and re-dressed, and have been given chemo, anti sick, anti fungil, anti DVT, anti tax man injections/infusions/ tablets as appropriate

Barbara was in until 8:00. Roz and the grandchildren came in for an hour or so- which was lovely. The kids can come until  my neutrophils drop below .5 in a few days

I feel fine at the moment. Well good night for now, and thanks for all the good wishes from around the world.

Now back to drinking several litres a day, unfortunately mainly water

Hickman Line Day

I go in tomorrow for the transplant, but today was mainly about getting my Hickman line put it. (I have a dear friend whose name is also Hickman)

The line is pretty uncomfortable to put in. The target is the jugular vein below the top dressing next to my neck. The next one down the chest is where they start a tunnel to put in the line. The keep it well away from the vein to decrease the likelihood of infection tracking to the vein. After it was done, they X Rayed me and it was put in perfectly.

This line will be brilliant, as it can be used for regular blood tests, giving me chemo, blood, platelets,antibiotics, saline, etc and even food if I cannot eat. Mind you I could live of my body fat for quite a while - I could do with losing a few pounds.

My last bits of farming were bring some sheep from 4 or 5 fields away to have suspected fly strike dealt with - we caught it very it very early and the ewe is fine. The sheep are just going into the barn, with my lovely sheep dog Josh behind. The sheep never do anything slowly, so I could not catch up with them for a closer shot - click on the picture to see it better. Josh is going to miss me while I am away - he tends to sit at what ever door I am going to go through to ensure he never misses going out with me.

This evening I also held the torch while Barbara and a friend caught lots of cockerels who we think would look much nicer in a plastic bag in our freezer!! Well it is a farm.

Pre Transplant activities

Its been a very busy week. Buying things to take in with me, sorting things out for when I am away etc. Its a bit like going away on holiday for a long time and have to get everything in order and actions placed on staff - and knowing that when I get back there will be more things to sort out.

A tip for your teeth.
It is very important to minimise the chance of getting mouth infections during a transplant. I went to the dentist to complete a root canal treatment and get a final cleaning. For many weeks I will not be able to use hard toothbrushes, nor floss as my immune system will be low and I will cut easily (your skin, lips, gums etc become very fragile). They will give me strong mouth wash 3 or 4 times a day - Cordasyl I believe. The dentist suddenly remembered that the same company do a gel and more importantly a tooth paste with the same formula, and gave me a few sample tubes.

Heart and lungs
I have been doing 4000 to 7000 steps every day, climbing stairs, going up hills on my farm and anything else I can to keep my heart, lungs and body fit. My sheep dogs really like it when I get them to work - they will not enjoy the next 3 or 4 months of relative inactivity. When can next work around the farm again, they will be thrilled. I have also have full body massage and reflexology - which help with stress and general well being.

For boredom in hospital
When I am not feeling absolutely rubbish, if it is anything like when Roz was in, you need lost to do - otherwise it is numbing by daytime TV. So I have a few compelling books to read, including the Hobbit and the Lord of the rings. I bought new hard back copies so that the letters would be large enough to read easily, and because my existing well worn and much loved copy is a health risk!!
I will be furnished with a variety of DVDs. On my iPhone I have a lot of favourite music. The isolation ward is very well equipped - including a smart TV and free wifi. I will be taking my laptop with several website that are in need of a major overhaul - I am web-master for our own website, one for Roz and several local organisations such as the Rare Breeds Survival Trust. My intention is to smarten up their image and make them all work on smart phones, pads as well as PCs and Macs.

Loss of hair
I am bound to lose my hair so I have had it cut short to get used to it. My wife has also kindly knitted me several different hats to wear - from very soft up to ones for out door use.

Ros is still doing very well, and had one of her infrequent chemerism tests which confirmed that her donor cells are very much in charge. I look forward to letting you know the same about mine in the future.

The date is set - and its soon!

I went in for my pre-transplant clinic, expecting to hear that the date had not been finalised, or set for the end of October / or November

Instead it had all moved on.

I had my meeting, where they told me I would have my transplant in about 2 weeks! I then went through the whole process, side effects, how they would be mitigated against, and % risks in each major stage. As we had been through this before we understood it all, albeit needing some refreshing of memory - and there were a few differences as technology and drugs have moved on.

Seemingly my heart, kidneys and lungs and anything else they tested for are in top notch condition, and I am feeling very fit

I then had a bone marrow aspirate by Dave, who did a brilliant job - I hardly felt it. They will check that on Monday or Tuesday, and only if my blasts have rocketed would they deviate from the plan below. (If it had gone up badly, I would be whipped in for heavy duty extra chem inpatient stay)

So the schedule is
7th Oct - blood tests
8th Oct - have a line put in my chest so that all tests, intravenous medicines, transfusions etc can be done by that, which is great as it save having 10s of jabs a day
9th Oct - admitted to a Transplant isolation ward.
14th Oct High dose chem to wipe out my entire bone marrow, and mess with a few other things probably
16th Oct Stem cell transplant - which is just an infusion a bit like being given blood
Then for two week I will be given blood and platelets as needed, as the new bone marrow needs time to activate. During this period I am at risk of infection due to no white cells.
After 5 weeks or so I will be let out when my counts have come up - particular the white cells

Meanwhile they monitor carefully and pump me full of all manner of stuff to preempt problems or fix them

A delightful morning out

Pete and I are fellow MDS sufferers at Derriford Hospital. Pete is also on azacitidine , being just over a year behind me on the number of treatments. 

While waiting for treatment we have 'shot the breeze' about many things and given each other great support for over a year now.

Yesterday Pete very kindly picked me up in his lovely Aston Martin sports car, seem here between us with my Jaguar behind. We went to Buckfastliegh where the renovated railway track and rolling stock has its main station and sidings.

There we had coffee and 'put the world to rights'. It turned out that he was in the Sea Scouts while I was in the Air Scouts

He has very kindly offered to keep me company in hospital when Family cannot make it. 

Heart, lung and kidney tests

This is basically to make sure my main bodily functions are up to having a bone marrow transplant

Check out my heart

I stripped to the waist and then was hooked up to a series of machines by three heart monitors - which measured my pulse and then presumably super imposed the trace along side the ultra sound traces that followed

The nurse examined my heart and major veins from three different directions taking images and short video clips as my heart beat. She showed me some results. My heart and all valves seemed to be just fine. It was really interesting when she showed me a main vein - vena cava - as I breathed in deeply the vein closed up completely and as I carried on breathing the vein filled up again. Good job really !

Kidney test using Nuclear Medicine

This was very easy. A nurse gave me a low dose of some radioactive tracer, which then has to be dealt with by the kidneys. Then at 2 hours, 3 hours and 4 hours to the minute if possible, I had blood tests that were all sent for analysis. Presumably they also monitored my other normal blood counts at the same time. This is then a good test of kidney function

Lung function test in the chest clinic

The tests were much more thorough than I remember from years ago. They hook you up to a lung monitoring machine, through a disposable sterile mouth piece - mine was blue. Then I did three tests, and repeated each until they had consistent results. They all involved  normal breathing, very deep inhaling, very deep exhaling,very fast and slow, and lastly after a fast inhale all the way; I had to hold my breath for 8 seconds. I felt perfectly fine during all of it - no problem.

Hopefully all the hard work the past few months trying to get fit should show dividends. Everyone says that the fitter your body functions are the better. This is not getting fit in the sense of loads of extra muscle - although muscle tone of the heart and lungs is important

I will get results on Friday.

We could have just sat there and read all day, but in the bigger time gaps between things we walked around, had snacks, and found a local nature reserve which we walked around for 45 minutes. Barbara and I both have the 'Pacer' App on our iPhones so were able to record how many steps we have taken during the day. So I had done over 5000 steps by lunch time.

 

Pre Transplant Procedures commence

Well here we go

I finished my last dose of Azacitadine yesterday (probably :-) ). I have managed the effects of these last two courses quite well, even though they knock me out for several hours given the full strength nature. I suspect that my fast recover from the chemo is in part due to diet, a lot of walking, climbing stairs and hills quickly, and doing controlled deep breathing for a few minutes each day.

I just got details of my next steps
The transplant is not a 'go' until I pass various tests and have a pre-transplant special meeting with my great consultant.  This mainly to go through the procedure and the risks and what can be done about them. So the tests start on Monday with:

09.00hrs-ECHO(Heart test) Cardiology

10.00hrs-Nuclear Medicine for Kidney tests

A series of blood tests taken at 12.00/13.00/14.00 in the venepunture suite

12.30-Lung function test- Chest clinic 

Special pre-transplant clinic on Friday

Bone marrow test and other things to follow

During all of this we are waiting for the preferred donor to be checked out and confirm a mutually acceptably date - hopefully mid to late Oct

So this is good. A transplant is the only opportunity for a cure, so even though it is scary I will go forward to it with all my will power and strength. I can count on a great team at the hospital, and the constant support of my wife and Roz and help of other family and friends when they can make it. 

All prayers gratefully received.