18th November - 255 days post transplant

It is been some time since I updated my blog, so I thought it was time to do so. Well it is a bit positive, bit negative. I am putting weight on which is good, but I am suffering from GvHD which is showing itself with skin pealing off and problems with my stomach and bowels. I am scheduled to go into Addenbrookes and have a camera inserted in my back passage and a sample of bowel taken - nice!!!1

I am very tired as I am on a steroid reduction program with the reintroduction of the immune suppression drug Tacrolimus.

Funnily enough the hospital is pleased with my progress and my next visit is on the 30th November which is getting close to the birth of my grandson!!

13th October - 219 days post transplant

Well I am late publishing again mainly due to the fact that the children where home this weekend and we had Tizzy's baby shower, so apologises to all.

The last two weeks have been pretty rough what with sickness and diarrhoea coupled with loosing more weight, struggling to eat and drink and depression!!! However things started to improve around the 11th and the meeting with my consultant and support nurse at Addenbrookes on Friday was very positive.

According to all the blood tests and chemical analysis my blood is now 100% donor and there are no traces of the Leukemia showing in the blood. Praise the Lord!! The dryness in my mouth has improved and I now able to drink and I have started to eat. When I was weighed I was 63.4Kg, 60Kg is the critical level. I am now able to graze during the day rather than stick to fixed meal times so hopefully my weight will start to increase. 

My consultant stressed that I have had two traumatic events - the transplant and the three weeks in intensive care. He pointed out that the first has had; and will continue to have for at least 18 more months; a major impact on the chemical make up of my body and that depression is normal. This has of course been heightened by time in intensive care. Addenbrookes are setting up some meetings for me with people of a like mind to me who are a couple of years further down the road. They will be able to share their experiences and reassure me. If needed they will set up a meeting for me with one of their clinical physcologists. I cannot fault the care the hospital are providing.

The tablets that I am taking to reduce my iron overload seem to be working well. The level should be under 1000 and prior to starting it was around 6700. Now it is down to 2700.

GvHD seems to be getting under control and skin flaking has improved.

29th September - 205 days post transplant

Well, this is a little late being published, but better late than never.

I saw the consultant on the 29th and the rash had gone on my lower legs and lower arms, however it has now come out on my chest and upper arms. So application of ointment continues but in different places. 

Skin flaking off has improved, but is still a big problem on my scalp.

Saliva has started to return. It is helping the speaking but not that much help in eating. Talking of eating my weight seems to have stabilised at last. I have Scandishakes (liquid supplement) every day.

I have suffered a lot from acid indigestion which was making it difficult for me to eat in the evenings. I now have some tablets for this, which seems to be working - time will tell.

15th September - 191 days post transplant

Well it is still a roller coaster ride and definitely not what I had in mind this far after the transplant. The issues are many but all seem to be tied in together.

My skin is drying out and becoming like leather and I have a rash on the legs. Two weeks ago I was referred to Dermatology as they thought it might be a drug reaction. They gave me a raft of creams which sort of worked but not that well. This Friday my consultant decided that it looked as if I had a variety of graft v host disease (GvHD). So now I have a complete new set of creams and a strict application regime for the next two weeks which really means I cannot leave the house. My day goes a bit like this:-

• 8.00 am tablets
• Shower with soap free special "soap"
• 9.00 am apply steroid cream to legs, arms and face - have lost eyebrows
• 10.00 am apply moisturising cream
• 1.00 pm apply moisturising cream
• 1.00 pm tablets
• 3.00 pm apply steroid cream
• 4.00 pm apply moisturising cream
• 6.00 pm apply moisturising cream
• 6.00 pm tablets
• 10.00 pm tablets

On top of this I have no saliva production so eating is now a big problem. This in itself means that I am loosing weight which I can not afford to do. By mid afternoon I am also feeling very tired. My specialist nurse told me that it will take at least two months to recover from my one month in intensive care. This was quite a helpful comment as it set a boundary.

Well let's see what happens over the next two weeks.

25th August - 170 days post transplant

Hi all,

Well it has become a bit of a protracted rough ride. On the 13th August, yes 2 days after I came out I was back in Addenbrooks with another high temperature. I was out again on Friday 17th. The out come of which was that I had a severe reaction to two antibiotics. I have now been taken off these and every month have to go into Addenbrooks for a one hour session of having another drug via a nebuliser. This foul and has it's own side effects - nausea, fatigue, cough and caused a complete loss of taste and a continual dry mouth with no saliva.

How do I feel - Well my skin is pealing off in sheets, tired and generally fed up. I am sort of back at the stage when I left hospital. I feel cold, particularly late afternoon till I go to bed. Lost more weight after having putting it on.

Lets see what my consultant has to say on Friday

11th August - 156 days post transplant

Hi all.

I guess those of you who have not being following Mary on Facebook may have wondered what had happened to me?

A short synopsis of events from the 23rd of July is that I was taken into Addenbrookes in the very early hours of Tuesday 24th July with a raging temperature. Frankly I have little recollection as to what transpired over the next 2.5 weeks until I was released on Thursday 10th August. I was admitted to C10 the transplant ward and within a day or so transferred to Intermediate Dependency Area [IDA] as my temperature had spiked at 41.5 and my SATS showed 90% oxygen in the blood Here I was on Oxygen at 70% level and at a high rate of delivery. IDA is one stop before intensive care!!

I had 4 xrays, 2 CT scans and 2 ultra sounds plus arterial blood samples taken (ouch!!) as well as the normal twice daily blood tests

I had visits from Haematology, Heart, Chest, Infectious Diseases and Tropical Disease Consultants, all trying to figure out what was wrong.

Haematology said that on my paper results I ought to be in Intensive Care but physically I did not stack up against the figures.  We Welsh like to set puzzles! 

Eventually it was discovered that one of the rare side effects of one of my drugs was to screw up oxygen levels in the blood. Stopped the drug, put me on an intravenous alternative and SATS started to improve.

After further exhaustive tests no one could find out the root cause of the infection I had, except to say it was chest related. So as my fever had abated I was discharged home.

I feel as weak as water and as if I have been through a wringer backwards. Lost weight - great I don't think!!

Thanks to all friends and family who supported Mary and my children in prayer and practical ways over the last 2.5 weeks. Keep praying that I will make a full recovery and that this is the only blip I have.

I now have a week ahead of visits to Addenbrookes - more on this next week.

21st July - 135 days post transplant

Well today was just bloods, so not much to relate.
Feeling a bit off colour.
Blood pressure was  a bit on the low side.
As from today I will only post on a fortnightly basis after I have been to Addenbrookes.

14th July - 128 days post transplant

I forgot to post this over the weekend, so I hope no one is panicking that something may have happened to me. This weekend was the first that was nearly like a normal weekend. Got out and about a bit with Mary and managed two meals out at pubs. Time was chosen so that they were on the empty side.

There was no visit to Addenbrookes this Friday. Should have mentioned that last week!!! The situation is that I have bloods one week, then a free week, then the consultant the following week, free week and then bloods. This being the case I will now move the blog report to every fortnight after a visit to Addenbrookes.

Nausea has improved immensely as has the metallic taste in my mouth. It looks as if it will take a least a couple of months for my finger nails to sort themselves out and boy isn't that going to be a bundle of fun. They are painful at the moment and if you catch them on something .............!

My hair has definitely stopped falling out and is now in to the regrowing phase. The hair on my head, however, is taking its time over this!!!! Hair on other parts of my body id re-appearing much quicker.

I visit Addenbrookes this coming Friday for bloods and will provide an update after that.

7th July - 121 days post transplant

Well we are now a third of a year down the road since the Bone Marrow Transplant without any signs of rejection and getting stronger week on week. This week we had the results of my first bone marrow aspirate (BMA) I had a few weeks ago and it showed no signs of the disease. This is great news, though it does not mean that I am cured as we do have to wait for the results of two more BMAs, one in about 75 days time - the end of the second 100 days and another one a year down the road. We were seen by one of the senior haematologist and he was very positive and told me that I could now start to ease myself into leading a normal life.

It is highly likely that in about two to three weeks time I will start to have my childhood vaccinations again. This does underline that I have started a new life!!!

Stomach is feeling pretty good now. The problem I face at the moment is nausea when I look at certain foods. This could be caused my smell? I still have a sweet sickly, metallic taste in my mouth which increases as the day goes on and that does not help eating as the taste of the food can be awful.

My finger nails are giving me problems as they are painful. This is caused by the new nails growing behind the ones damaged by chemo.

Lost a little weight but this is likely to be due to the fact that I am doing more.

Fatigue is still causing a hassle, but it is not as bad as it was. Just need a rest in the afternoon, no longer in the morning.

30th June - 114 days post transplant

This week has had its ups and downs. I had a couple of days with a very bad stomach and felt extremely nauseaus. From Thursday I have been very good, except for the fact that I think my blood pressure may be on the low side. Seem to get a bit dizzy when I stand up. I am now down to one tacrominus in the morning and this change may the reason, but will sort it out next Friday when I see the consultant.

A first was acheieved on Friday. Chris and Sarah Broughton took me out to a pub in the country and I had a wonderful lunch of scambi, chips and peas without any feeling of nausea. It was just nice to be out in the community again, even though it was for a short time. This was repeated today when Tizzy, my daughter took me out for lunch. I pushed the boundaries further and had gammon, fried egg, chips, peas and a pinneable ring. Orange and lemonade was the chosen drink on both occassions - cannot cope with anything alcoholic! It does seem as if it is smell that is causing me to feel nauseaus as both meals did not have any overpowering smell, whereas a meal of mixed greens, potatoes and a meat with gravey does.

Still have the sweet metallic taste in my mouth, but this mainly a problem from late afternoon. It does seem to be going slowly.

The church house group that Nigel Greenslade belongs to at Brickhill Baptist Church came round Thursday evening and sorted my garden out for me. They did a marvelous job and stayed afterwards for refreshments - it was nice to have fellowship with them.

23rd June - 107 days post transplant

Well, no visit to Addenbrooks this week and I am in to my second 100 days stint. The week has been reasonable, with only a few days when my stomach really complained about having to accept food. Nausea has been a bit problematical and rather than bee a martyr I have succumbed to taking the anti-nausea pills which do seem to work to a large degree.

Still eating small meals and the weight is staying about the same. Hair is really starting to come back, though I guess it will be quite some time before I get a decent head of hair.

Skin is still flaking off. Maybe I should take shares in the company that makes E45 what with the amount I use every morning.

Made a couple of trips out to garden centres for coffee - got to start mixing with people, but this is fairly safe as there are not many people around on a school afternoon.

I know most of you are complaining about the weather, but I for one find it good as I am house bound the majority of the time!!

16th June - 100 days post transplant YEAH!

Well today, Saturday, is the first major marker after leaving hospital. The first 100 days are a very critical and I have made it through without any major problems. No GvHD and no CMV.

All I can say is that God is good!!

I now face the next 100 days when drugs are reduced and I pray that we get through this time as easily as the first 100 days. I have now started on a Tacrolimus reduction program and come of the drug mid July. Tacrolimus keeps the immune system low so as to try to avoid rejection and enable the new stem cells to become encrafted, so reducing the drug brings the immune system back on line and hopefully nothing will happen. There is the possibility of chronic GvHD, but this can also happen up to the end of the 2nd year following transplant. Getting back to 100% fitness is going to be a long haul.

Well Friday was one of those days! Had a bone marrow aspirate, this was the 4th I have had and it gets no easier, my backside is still sore. The results of this will be key to how my recovery is going so I am hoping that the results from this will be positive.

My Haemoglobin had fallen again and is now at 11.9, but my platelets were up at 102. Neutrophils were down at 1.61. Dr Crawley was not concerned and only wants to see me in three weeks time and no blood tests in the interim, so I guess this must be a positive. I had two of my drugs stopped, so am down from taking 22 tablets daily to 17.

Hair has started to grow, though I must admit that I look like a badly plucked turkey - not a pretty sight!! I have to shave daily now otherwise Mary complains.

9th June - 93 days post transplant

Sorry for the delay in this weeks update. Friday was just bloods and I do not have the details. I guess they must be OK as no one has called me from the hospital. Weight was also done which showed a slight increase. Mary's force feeding must be doing the trick!!

Was not feeling that brilliant over the weekend; I think I might have over done it a bit; and just forgot about writing my blog. Nothing too much to report. Stomach and nausea still being a problem. Skin is now dry all over my body and flaking off. E45 being applied in copious doses. A start has been made on the reduction of Tacrolimus - the drug which suppresses my immune system. It will be interesting to see what happens as the amount of Tacrolimus reduces.

Discovered on Friday that I cannot have the drug to reduce my iron overload until I have had another bank of tests. Got to have my hearing checked, eyes checked and another heart scan. I think that only leaves the brain to be studied and they may have a problem finding that as I think it has gone on holiday considering the amount of things I seem to be forgetting right now.

Had the "bum fluff" shaved of my head over the weekend so that I don't look so daft. Hair is coming back on my chest and I now need to shave daily. All good progress.

I see the consultant this coming Friday so let's see what that brings.

2nd June - 86 days post transplant

Sorry all followers, I forgot to hit the publish button.

Friday was an interesting day. Weight has gone up slightly, bloods are fine as are platelets and neutrafils. Having chemo brain I forgot to pick up the results so cannot give you actual figures.

I was also given a reduction plan for Tacrolimus (immune suppression drug) which starts on the 8th June and I stop taking the drug on the 18th June. Of course there is always a catch!!! Bringing my immune system back up slowly may cause Graft versus Host Disease to kick in which I hope does not happen!!

Now this may be the reduction of one tablet, but to make up for it they have added another to the pot. This is a tablet to reduce the iron overload that I am suffering from due to the blood transfusions I have had over the last year or so.

Another little present I received to day was my appointment for a bone marrow biopsy for the 15th June. Aren't I the lucky one!!! Now where's that cloth I was biting on the last time I had it done!!

My GP now wants to see me as my yearly heart review blood test has shown that I have a high glucose level of 6.7. Apparently 7.0 puts me in the diabetic category - wonderful!! However my consultant at Addenbrookes says that it could well be caused by the Tacrolimus so it looks as if it is going to be another waiting game to see what happens when the Tacrolimus is reduced/stopped. I think my body would suffer less if it was playing rugby for Wales against England!

I did have a couple of poor days this week. It transpires that I managed to overdose by 2 tablets on my new drug that fights chest infection - result could not sleep (got maximum 2 hours sleep one night) and was feeling sick for a couple of days. Trust me to foul it up!

26th May - 79 days post transplant

Don't panic Mr Mannering, don't panic is the order of the day. Sorry for the late posting but have been waiting until I could get Friday's results from Addenbrookes. These show a slight fall in Haemoglobin, neutrafils and platelets but I am assured that this is within limits and no call for concern. Bio-chem results are OK.

75% of the way through the first 100 days yippee, but in 21 days a bone marrow biopsy and bone sample awaits. Oh joys!! I'll be lighter on my right hand side due to bone loss!!

Metal taste is starting to decrease, but still problems with my stomach and retching over some foods. I am still loosing hair and also growing it at the same time. I think we may still be in a negative hair loss overall.

Discovered that even covered up I cannot cope with the heat. My preferred time of day is now at eight in the evening sitting on the patio, but darn it I just dont like the taste of beer!!!

This week has been a special week in more ways than one. I had my first "real" day out; as opposed to a trip to Addenbrookes; when I went to Huntingdon to celebrate Tizzy's husband Chris's birthday which we celebrated in an Italian restaurant. Meal was booked late so that the restaurant was virtually empty I manageed 75% of a white bate starter and 50% of a massive pizza. Then Chris and Tizzy  broke the good news that a baby is on the way and due in December. Oh I do feel old!!! Sex as yet unknown.

19th May - 72 days post transplant

Not much has changed this week. Eating is still a problem even with Mary cracking the whip!!! I seem to have a strange relationship with food. I have never been a big desert eater, but now tuck into them with gusto. Pizza is good as are bacon sandwiches, but chicken and roast beef meals are really just not on. I'm taking an approach of eating what takes my fancy.

Haemoglobin has fallen a little, but nothing to be worried about. Platelets and neutrofils have risen and the consultant is convinced that it was the Septrin that had caused the problem with them falling. He has already prescribed a new drug for me to use from next weekend after bloods have been taken (they need to check an enzyme in the blood before I can take it). It now looks as if  it is still a weekly visit to Addenbrookes, with one week being blood tests and the following week being consultant and blood tests. This is far better as, on bloods only days, we are home by 10ish.

Apart from the food issue and the metallic taste all seems to be progressing well - on good days I can get up with Mary at 6 and stay up with her until 10 : 30 with a short rest during the day. On the not so good days it is still  bed at 7 : 30 to 8 !!!

12th May - 65 days post transplant

Sorry that this week's blog is a day late. This Friday it was only a visit to have bloods checked and since then I have been hoping for a call from Addenbrookes (as previous) on the Bio chem results. I was then going to ask them for the blood results. No such call so all I can assume is that all is all OK and I'll have to make a call tomorrow (Monday) to see if I can get them. I have a set of results for each Friday for my haemoglobin from the 30th March, so have plotted these for those interested in data. A steady rise!!!

Still of Septrin and feeling good without it.

I managed to do my back in last weekend which has made this week a little difficult. The back is getting better slowly and I now just have difficulty getting out of the settee and chairs.

Eating is still a problem and is most bizarre. Today I had two bacon sandwiches for lunch and ate them without any problems and with gusto. However when it came to my main meal in the evening it was a real struggle which I gave up on except for the pudding. Now that is strange because I am not a pudding man!!!

Other than that the week has been a reasonable one.

OK, Blood tests are in and they are good.
Neutrophils have risen from 1.87 to 2.72 [now inside range 2 to 8]
Platelets have risen from 80 to 85. These have a bit of work to do as the range is 150 to 400, but the consultant said that they are slow in recovering. They need a kick up the proverbial me thinks. However one cannot complain at the little things as they were 40 before I went into hospital.

Mary went to the doctor today and has a viral infection mainly in her throat. Just what we needed. Spare bedroom for me for a while!!! Not that I don't love but she can keep her own bugs.

5th May - 58 days post transplant

Well this has been a strange week. We had a stressful time due to last week's results for although we were pretty sure that the cause of the dip in the results last week was caused by a reaction to Septrin (one of my drugs) you cannot help being concerned until you know for sure.  This was lifted to a degree when it was the consultant's "side kick" who came out and called us in (over 2 hours after our appointment was due!!). This was reinforced when we got the results.  Platelets have gone up from 79 to 80, which basically means they have stopped falling and are constant and Neutrophils have gone up from 1.49 to 1.87. He seemed to believe that Septrin is the problem and gave me an appointment for blood tests only for next week and an appointment for blood tests and clinic with the consultant the following week. He was a really pleasant, helpful doc who said that they should know for sure next week. I have to stay off Septrin for the next two weeks. Hopefully we will now see an increase in both the Neutrophils and Platelets.

This feels like a real step forward. Whilst Mary thinks the shops at the hospital are a good distraction she reckons she knows their stock levels better than they do!!!!! Spending nearly all of every Friday there is not a great way to spend the day. Even if I have to go for bloods every week and clinic every other week it means that we can leave at 06:50 and be home by 10 on blood only weeks leaving us with the majority of the day free.

Heamaglobin has gone up to 14.00 [norm is in the range of 13.00 to 17.00] which is amazing for me and generally I feel pretty good if rather tired on times. My weight has stayed the same this week which they were pleased with as it looks like I may have stopped loosing weight. This is partly due to Mary working very hard to feed me including a bowl of chocolate treats in the lounge etc. She complained to the nutritionist that this may be helping me but certainly not helping her!, apparently this is a common complaint of partners. My results showed a need to increase the tachrolimus tablets to 2 milligrams per day from 1.5 which is nothing to worry about but good to know that they are keeping a close eye on things. Also my kidney function is still OK.

28th April - 51 days post transplant

They did warn us that there would be hic ups along the way and we have just discovered our first hic up!!!

After a pretty good week with areas of progress like being able to take the stairs two at a time with little effort and then, as a real plus, remembering why I had gone up stairs in the first place!!!! we got to Friday -Addenbrokes day.

We arrived at 8 O' clock for our 8:50 appointment, as they have to do bloods first, and then waited until 10:20 before going in to see the consultant. Unlike all the previous visits he was not too impressed with my blood results!!! My platelets and neutrofills had fallen quite significantly over the last 2 weeks. He said this would be for one of 3 reasons - a virus (but I haven't been unwell), one of the drugs I am taking, Septrin (so he has taken me off this for the week to see if that is it) or failure of the transplant.

The other results were OK so haemoglobin is still over 13 and whereas my kidney function was a bit dodgy last week it is fine so no need to change the tachilimus level plus all my other bio-chemical results were fine.

On the whole I feel I am getting stronger and better but still have the odd down day. This weekend has been a bit like that. I managed to sort out the tumble drier which was so full of fluff it began to smell of burning (I am sure Mary was hoping to burn the utility room and kitchen down as they badly need replacing) which I couldn't have managed a week ago. But on the other hand I have felt pretty ropey and emotionally drained.

Please keep praying- especially that the results next Friday show that it was the Septrin and all is back on track.

21st April - End w/k 3 at home

Overall this has been a good week. A few small ups and downs, but nothing serious. I now have a rota of people baby sitting me and already have had to disappoint two ladies who were offering bed baths - I was up and dressed!!! My sitters are a great help and I could not do without them at the moment as they provide the security I need.

There is a slow sign of general improvement. I am eating better, not feeling so sick and getting better nights sleep. I tried a very small glass of wine last night and it tasted terrible, so some evenings I'm sticking to tea while others have a nice glass of wine!!!

Mary is trying to convince people that my dark skin on my hands is because my donor was dark skinned. After 36 years of marriage I still cannot keep her in control. As a Christian husband and considering what St Paul said about husbands and wives, have I failed???

Friday was a good day at Addenbrookes. Haemoglobin was up at 13.6 which is brilliant. I met a guy in clinic who made me realised just how thankful I had to be. At week 36 after his transplant he had hardly managed to get out of bed and there I was at week 43 feeling rather chipper.

14th April - End Wk 2 at home

Back to Addenbrokes on Monday which went well. Levels were good again and the magnesium tablets seem to be working so no drip today so a nice short visit for once. I was out by 11am!!!!

Unfortunately, despite being pleased with my results, they are determined not to let me rest as I am back there on Wednesday for more blood tests and then back again on Friday for my regular clinic. Mary is uncertain that she is really spending less time at the hospital than before!!!

Wednesday was a good trip as we were out by 2pm. The results were still good.

Friday was a good trip though we did not get out till mid afternoon. Interestingly enough, despite eating more now I had lost a bit more weight so cannot wait for my appetite to return fully as it will be a good excuse to eat all those things you usually feel you have to limit. Apart from anything else none of my clothes fit even with a belt. There was just a long wait between blood tests (My Haemoglobin level was up at 13.2 the best since around 2009/2010) and seeing my consultant. Once we got in there it took no more than a few minutes as he was pleased with the results.  Day 100 after transplant is a key day (Friday was day 36). By this time Acute GvHD [Graft v Host disease] should have raised it's head.and around day 100 is the time when Chronic GvHD raises its head. Though it has to be said that not all patients get either or both of these diseases. When we hit day 120 or there abouts I can start to breath a little easier. It is quite stressful waiting to see if I am going to be hit by either or both of the afore mention problems. One interesting little side effect is that my hands have gone a very dark brown. Apparently, according to Mary the back of my neck is too. The consultant didn't seem at all bothered and neither am I. If it continues to spread across my body I will have the best fake tan out!!!

Shaving seems to be a twice weekly affair at the most so Mary can no longer accuse me of being bristly as my face is as smooth as a babies bottom!!

Overall things are good, it is just difficult as you always want to run before you can walk. I just need to be patient and appreciate just how fortunate I am and how good God, life, family and friends are.

7th April - End of Wk 1 at home

Apologises to all that this has been posted a few days late.

Well Saturday sees the end of the first complete week at home. It has been a hectic week to say the least. The beginning of the week found me feeling the cold although the temperature in the house was set at 21C. So I increased it to 22C and started wearing a hat. As the week moved on my body started to adapt and have now reached late afternoon before I start to feel cold. That's a signal for tea and bed. I am sure that not being able to do anything physical does not help. However I can see progress which is encouraging.

Eating is still a problem as I can only cope with small amounts of food and drinking is an effort. Again, difficult as this is I am eating more and beginning to actually enjoy it sometimes.(This is no reflection on Mary's cooking but due to a churning stomach and a metallic taste). I have to drink over 2.5 litres a day and when you are counting every cup it does become tedious. The tablet count has gone back up, so show me a tablet and tea at the same time and I can be guaranteed to heave.

Went to Addenbrooke's on Thursday which was a sort of good day/bad day. Good as my line came out and my blood levels were still on the up. Bad as one of my trace elements was low, so that was two hours on a drip. Yes you guessed it, another full day at Addenbrooke's and an appointment for Monday at 09:30 (yes that's correct Easter Monday)!!! Do these guys ever sleep??? However spent a lovely Easter with the family who came home to celebrate and was pleased that they could see a difference as it is not always easy to do so when you are on top of it.                                  

Had a call from a doctor from Haematology on Thursday evening to tell me that my one of my bio-chemistry levels was too high and to reduce my Tracrolimus from 1.5mg to 1.00mg. This is one of my anti rejection drugs. Well at least one less tablet to take in the short term.

So next visit to Addenbrooke's is on Easter Monday.

31st March -The beginning of the next part of the adventure

On Wednesday 28th I was released from Addenbrooke's with a host of tablets and a list of dos and donts and a reminder that although I was being released I was not well but just entering the next phase of my treatment.

Thursday was my first full day at home which I found quite stressful as I no longer had the safety of the hospital around me. I had my first small walk which quite tired me out.

Friday was an outpatient visit at Addenbrooke's. Had to be there for 9:30am, but were held up in traffic so it was a bit of a rush when we got there.On seeing the doctor and then the consultant they both were very pleased with my results thus far. Jo, my specialist nurse offered us a print out of  results,to which we said yes, foolishly thinking we simply took them and left for home - it was only 11:30.

Unfortunately she had noticed that they showed that my white count was on the high side which could indicate an infection in my line so removal of the line was suggested. After further blood tests to check this out followed by a good hour and a half wait we  trekked to Cardio Vascular to have this done.

By now I had come to terms with the idea when the second results showed a lowering of the white count which meant that if there was an infection it was under control. It also showed a shortage of potassium. So now they decided to leave the line in in case of any emergencies over the bank holiday.

Soooo......... did this mean we were free to go? Not a chance!!!!!

With line left in we trekked up and down more corridors to haematology for a new dressing on the Hickman line and a  drip containing potassium that took 2 hours. More tablets prescribed. Eventually we  left Addenbrooke's about 5:30pm. By the time I got home I was completely exhausted.

Saturday was a reasonably quiet day. The gardening team came and gave my garden a good going over so that it now looks brilliant. There was no way I was going to get anywhere near it this year.Thanks to the team. My children descended for a quick visit en route to Huntingdon to celebrate Tizzy's birthday and some friends called round in the afternoon.

Realised I hadn't done a walk today as I took the rest of the day sorting out my many bags of tablets!!!!.Mary said it was OK as I had done enough walking the day before at the hospital going from clinic to clinic and back again.

Already beginning to feel more relaxed about being away from the safety of the hospital. As next Friday is Good Friday (not only good because of Easter but also as it is Mary's birthday) my next trip to Addenbrokes will be next Thursday so will update you all then.

28th March - A pretty smooth landing(for Ryan air)

After a bit of a restless night waiting for today I finally woke up late!!! I then waited for breakfast, waited for blood results, waited to see the doctor, waited for lunch but most of all waited for the escape team to turn up and take me home.

Eventually in the form of Mary, Sarah Broughton and Janet Binns, my own personal SAS arrived. As you can imagine this wasn't going to be the most subtle of "escapes".

Despite being desperate to go home it was quite hard leaving the safety of my little room and the safe hands of the staff on C10 who I can only describe as brilliant.

After Mary rushed round my room like a whirlwind stuffing things into bags I was ready for the off.

Having said my grateful goodbyes  Mary and I went off in search of the other two, my belongings and my "taxi" home.

I have to admit it was pretty scary the further I got away from Addenbrokes but finally arriving home and sitting in the garden with a cup of tea, a bag of licorice allsorts and some friends was wonderful.

It is going to take a while to feel safe but I have enough family and friends around me to keep a close eye AND I am back at Addenbrokes on Friday for my first clinic (and will be there every Friday for the foreseeable future).

This is now the beginning of the next part of my journey, it will be slow and not without its dangers but we are confident that with God's help and the support of family and friends we will get through it.

I am fully aware that this is my journey and no two journeys through this are the same so if anyone reading this is about to go through this just hold on tight and no matter what the bumps are you will get through.

This blog is not signing off but will now be written on a weekly basis after my visit to clinic

Once again thank you all so much and please keep praying.

27th March - I can see the landing lights....

This is due to be my last full day in hospital!!!

It's unbelievable to think that I first arrived 4 weeks ago today, in some ways the time has flown by (pun intended) and in other ways each day has felt like a month, but here we are at check out  (landing) time! Although I'm very excited to be going home I have been told (several times) that I am not going home because I'm better but because I'm now stable enough that home is the safest place for me to be to continue my recovery - away from hospital bugs and possible infections.

I've just had my discharge meeting and told what to expect for the next few months. There was a long, long list of things not to do and things to avoid but we were also reassured that if at any time we have any problems or queries we can ring them 24 /7 - another example of how excellent the care has been here.

As well as my list of things to avoid (beer, cheese, public places, shell fish, cut grass, log fires...) I was also told my most recent blood results, which were described as 'beyond fantastic'. My platelet count was so high that the nurse double checked the paper work, twice!!! At my stage, after the chemo and the transplant, they would expect it to be around 50, with a healthy person being any where between 100 - 500 and mine is....  327!!!! My hemoglobin is also higher than it has been since the end of 2010 when I was first diagnosed.

We were also warned about graft vs host disease (GVHD) which will probably appear within the next 100 days, many people (about 40%) get this in some form so we've been told to look out for symptoms and deal with them as soon as possible. However we've been told that total graft failure is very very unlikely, especially as my match was such a close/ good one and that my levels are all so good now.

I really am very excited about heading home but have to remember that although this is the end of this flight this is not the end of my journey; I'll be at Addenbrookes every Friday for the foreseeable future (years!), the first 4 months are especially important/ dangerous as I'll be on immune suppressors so have to be very careful and then we'll have to slowly start reintroducing things into my life. My nurse Jo said that even if I don't look ill I need to remember that the equivalent of a nuclear bomb has gone of inside my body and it is going to take a long long time to get better, even years before I am back to me pre-MDS self.

Before I land this plane I want to thank you all for riding along with me. I believe that my fast recovery time and good mental health has been helped by your prayers, love, support and blog comments. Please continue to think of me and stay with me as I disembark this plane and continue with the rest of my journey.

As the landing gear is engaged and I can see the runway I realise that I probably won't be able to keep this blog up daily but will try for weekly, so you can know how I'm progressing and moving forward.

I'll blog tomorrow when the plane has safely landed and I've collected my baggage from the carousel (and no I'm not talking about Mary when I say 'my baggage'!!)

Good night and God bless,

John & Mary, Tizzy (& Chris), David (& Renata), Deborah (& Rich)
xxx

26th March - Instructed to hold position & circle

Last night went well until about 3:30am, then when going to the loo I had the most excruciating pain in the lower abdomen. Good old morphine and a heat bag applied to my stomach solved the problem. The mental picture it brings to mind is the banks being caught and squeezed in the middle with the end result being that money pops out from all the windows. If any did please remember my share.

Had the results of my blood tests back today Hb is at 10.00 and I reckon this is the best it has been since January 2010 and my neutrophils are 0.76. Neutrophils are really shooting up and are really important. They were 0.1 on Friday, 0.2 on Saturday and 0.34 on Sunday

25th March - Is that a runway I see?

Taking stock of the situation, I have a sore throat, a tooth that will need to come out and extreme fatigue which means I cannot make decisions and focus on anything for any period of time. It is very difficult when you have zero energy, but there are things that you must do like eat, teeth care, shower, dress. Today took one hour to shower and dress, ah well it will get better even if it takes six months as the consultant told me yesterday. The idea of doing some work in the garden by the Autumn looks as it has gone down the drain.

Memory is rubbish but it has the advantage of being able to watch the same video over and over again!!

You would all laugh if you could see me doing this blog. I've seen 4 year olds who could get round this keyboard quicker that me

Sleeping is still not easy here so cat napping is essential. I know you wont believe me I am a very busy man with obs, tablets, getting out of bed for the cleaners etc etc

And now for the good news...
Feeling so much better emotionally again after yesterday - just a blip which they said could happen from time to time over the next few months. My levels continue to climb steadily, the doc was tentatively pencilling in Monday for arrival at Tyne Crescent but they have now said a few more days as they want my neutraphil levels a bit higher. Mary is disappointed in one breath but relieved in the next as it gives her more time to scrub the poor house out to make sure that no germs are allowed to live!!!!!!

Had communion again today which was lovely - this is at least my fourth visit from the chaplaincy which has been good. Mary said she has seen a vicar around with a dog collar and florescent orange shirt- mine are slightly less colourfully dressed!!!! (Mind you with Mary you are never too shore if it's a wind up)


ADDED NOTE!: Tizzy wanted me to mention that this was also a good day for me as she bought me a scratch card and I won £10!! Lady luck is definitely on my side!

24th March - A glimmer of light at the end of a dark tunnel

Today did not start off well, have never felt so down. I woke up with a headache, sore throat and ear ache. All I wanted to do was curl up in a ball and cry. The staff were wonderful, the nurse on duty gave me a cuddle and assured me it was all very normal. Mary and Tizzy came in early and held my hand as I slipped in and out of sleep.

However, these times do not last for ever and by the afternoon I felt calmer and stronger even if still desperately tired from all the treatment and the sleep deprivation.

More good news arrived in the form of the doctor who said that my white blood count had gone up and so too my platelets- they are very pleased with my progress.

I hope you have all been enjoying the beautiful sunshine and made the most of it with a BBQ.

23rd March - A little sight seeing..........

Things have been progressing slowly with very little to add.
However I did go on a short sightseeing trip today. I had to go for a CT scan to check that I had no chest infection.
I was wheeled through parts of the hospital I had never seen before despite the fact that the most direct route was past the concourse, the reason for this( according to my porter) was that they dont want to upset those using the shops etc by having sick people in the hospital-made me smile.
While the trip out was good in one way it made me realise just how vulnerable you become when you leave the safety of your little room.
Felt quite low today and wanted to crawl into Mary'sand Tizzy's bag in order to go home.

22nd March - Patch of clean air

Got my fix of oral morphine last night and slept like a log. Threw a wobbler at the staff around 6am as my temperature made the magic 38C, it went as high as 38.1C. Just gave me some penicillin. I have a CT scan on my chest booked for latter today, but the general consensus of opinion is that it will come back clear. The general feeling is that the cause is the tooth. Pity we did not keep a record of high temps and problem with the tooth, any way have been to the dental people here (called Max Factor) and they x rayed and recommended removal. My consultant agrees, but only when he says so as all cells are below the line and the white cells are showing signs of increasing. So it is a matter of bearin with it until my body is up to having a tooth removed. At least in hospital it comes free as part of my treatment.

Still have3 problems with the throat and gums in relation to eating and drinking, but I think they may be getting better. 

21st March - Who's Flying this Plane?!

Today has been full of little ups and downs!

Today I was taken off the saline so that I could go down for a chest X-ray, which as suspected was completely clear. I decided to walk this route as a little goal for myself and although it was the close X-ray unit in A&E, I am very proud to say that with a little help I managed it!

When Tizzy arrived for her daily visited she said my bald head made me look like Bruce Willis and was trying to get me to repeat some of his lines from Die Hard (I won't tell you which ones!!)  and said that I might get whisked off to Hollywood, I said it'd be more likely that I'd be whisked off to the mental ward at which point she replied 'At least it'd be a change of sceneray' - I think she has her mothers sense of humour!

Although my mouth still hurts and my speech is a little slurred I started to feel a bit better and even stayed awake throughout all of visiting (another mini achievement!) but this journey of mine is far too exciting to run too smoothly for too long so by the time we were nearing the end of visiting I had developed a rash (which turned out to nothing) and my temperature had reached 38.6 and I had the nurses worried again.

Just when they thought I'd be able to come off the antibiotics I go and worry them with my spiking temperature so the Dr was called, more antibiotics given and plans were mad to get this tooth X-rayed ASAP to see if it should come out. By the time the Dr had arrived my temperature had fallen back into the safe zone (anything below 38C) and was 37.3C, at which point he shrugged and laughed a little! It's nice to know I'm keeping them all on their toes! They suspect it is probably the tooth which is causing all this fuss rather than a more serious infection elsewhere (which is good news) so depending on the X-ray tomorrow I might be one tooth down in a few days! Tizzy has suggested I get a gold one to match my bald head and complete the 'bad-boy look', I've told her to see what her mother says about that!!! (I'll be more Phil Mitchell then Bruce Willis!)

No fluids tonight so I'm hoping to sleep soundly, thank you all for continuing along this journey with me.

20th March - To baldly go............

Fairly uneventful day.
The morphine was quite pleasant this morning so waiting to see if I get any more tonight.!!!!
My mouth is still sore but not as bad as it was so am still eating pretty well. My temperature has fluctuated through out the night (and day) but stayed under 38C-just.
 Obviously feeling very tired so the nurse said if I feel too tired not to get up in the morning but stay in bed. Checked this out with Mary, oddly enough she reckons it is good for my morale to get up-not sure if she is just jealous of my chance at a lie in.
The only other thing to report is that my hair has now gone, it started falling out in chunks this morning so they kindly shaved it all off for me.

19th March - The edge of turbulance

I am now skirting black clouds and the edge of turbulence. No way round it so the captain has switched on seat belt sign (in the form of liquid morphine).

I woke at around 1am and found I could not speak (some may say that is an improvement), could hardly get my mouth open and could not swallow. Tongue was coated in a black substance. Called nurse and liquid morphine provided in a syringe so that I could rinse my mouth and gargle. Made a huge difference very quickly. Had the same problem at 6am and more morphine handed out.The real main problem is the blister on the side of my tongue which stops me chewing and swallowing.

Hair is falling out but only very slowly!

On the bright side Mary's ticket let her out the car park last night!!
The facial maxilla people want to check my mouth out as swollen again and tongue sore so I get to go on a little adventure - a walk down to x ray- may not sound exciting to you but fantastic to leave my little room even if for a short while :).

The other good thing is that the consultant came round today and is pleased with my progress. He said that it may be a false blip but my white blood cell count has started to rise. 

18th March - Inflight entertainment.

Caused a small problem for staff last night. Temparture rose to 37.9 C. 38C is the tipping point for anti-infection protocol to swing in to action as it is classed as fever point. Trust me I did not hit the high point. By 06:00 I was down to 37.8C
Another little scare was when they gave me my blood last night and Mary noticed it was A negative. The nurse came in to do my obs and, when Mary querried this , she assured us it was A negative. Mary pointed out again that she knew that but I was A positive. One rather concerned nurse stopped the obs (and the blood) and went off to check things out. On her return she assured us that it was OK even though it had given her a bit of a scare too and the bloods continued.
To add to the fun and games Mary has had her brand new EXPENSIVE fortnightly parking ticket eaten by the machine 2 nights running. You can imagine how pleased she was!!! All sorted though as they gave her another.
It is now 7 : 30 pm and the "fun" has started again. My temperature has spiked at 38C so they have emptied my right arm of blood as well as several through my hickman line. Doctors and nurses keep appearing and checking me and now antibiotics and an x ray will soon take place. Poo and urine samples also taken.
You have to admit they are very careful (and caring) here.

17th March - Expecting tubulance any day now

Today was quite an uneventful day. I spent the normal amount of time on my enforced trots.

I have now started to develop a sore mouth and throat, but have found that tonic water is good for it. Staff wont let me add the gin - gin and tonic are standard for me on long  haul flights!!! Tooth has started to give me a problem again.

Had one back of blood as haemoglobin levels had fallen.

Had family visitors from London. It was good to see them mas well as Chris and Tizzy.

16th March - Storm clouds on the horizon

Today has been a reasonable day,  again a bit like yesterday.

On a 10 hour saline drip to replace the fluids I have lost over the last few days as well as those I am still loosing. The tablets are starting to have an impact. I have managed to eat all my meals, this the first time since Saturday.

My immune system is now at the lowest it will get and the doctor has warned me that it is from now on that I will get infections and that their job is to manage the infections and get me out the other side asap.

The real problem at the moment is just pure fatigue. It is taking me longer and longer each morning to get washed and dressed. I am frequently glad to get to bed by 7pm some evenings

 At present I am on a 2 hour magnesium drip shortly to be followed by a potassium drip. Then, joy of joy a 10 hour saline drip. Despite all this the storm clouds(so far) have been far smaller and less scary than anticipated so keep on praying :).

15th March - Cloudy Weather

Did not manage to write this at the end of day on the 15th. Just too darn tired. The day was very much a repeat of  yesterday. I had a 10 hour saline drip all day, coupled with the 8 hour overnight one last night I am becoming a close friend to my drip stand - I have named her Bertha.

The good news is that all the tests on the cause for my trots to the bathroom ( for Caroline's sensitives ) have proved negative and I have started a course of treatment. The bad news is that it could take up to 14 days to resolve as it is a result of the chemo.

Lucky me - I have an 8 hour drip tonight.

14th March - Level pegging

Another active night, my pedometer was whirling round all night. Despite this feeling a little better today. Tooth ache has gone which is a big bonus and I no longer look like a hamster.

The good news is that the doctor came today and said he was pleased with the progress so far despite the little problem of the constant exercise (am sanitising this for the sake of those with tender stomachs such as my sister in law Caroline). Am still on a drip (8 hours tonight) but not sure if that is simply because they are masochists.

On a serious note we are very grateful for the interest shown  please keep praying as they have proved invaluable so far x

13th March - the long haul continues......

Had a real rough night last night. I spent most of it in the loo so very little sleep. I turned my phone off in order to rest and finally dozed off after breakfast. Consequently when Mary kept trying to phone me she couldn't. I was woken by a nurse at 8 : 30 telling me I needed to turn my phone back on as ordered by my wife!!!!
Normal sort of day, feeling pretty rough. Pleased to say that the test for norovirus came back clear- not so pleased to say that they now testing for C difficile so they still can not give me anything for the diarrhrea as that will take two to three days!!!!
Every cloud has a silver lining, my jogging skills are improving and my waist lining is trimming. Bad news is - they don't like me loosing weight so spent 12 hours on a drip.

12th March - Minor Turbulance

Today has been pretty much as yesterday. On the 10th they found my fluid level was low due to the diarrhea, so they were so kind and sling up a 10 hour saline drip after visiting hours. So today I woke up with that still running after a poor night's sleep. Not easy to sleep when hooked up to a drip - no comments along the lines of a drip for a drip - and having to make dashes (not so much a dash, more a hobble!) to the loo with a drip stand in toe.

This was topped of during the day with a two hour saline drip with potassium in it as my potassium levels were below par.

The rest of the day was spent on the loo run resulting in me having a very sore rear end. I shall be so glad when the test results return and prove the problem is a result of the chemo. We can then at last start treatment and I may then get some decent sleep.

Appetite is decreasing but I am still managing a good breakfast and an ice cream for tea!!

As I am very, very tired last thing at night (8:00 pm in my books) I have taken to writing this blog the following morning when I am at least half a wake.

Thanks very much to you all for posting comments as I fined them really helpful and uplifting.

A great big thanks to all of you praying for me.

11th March - Long Haul Flights Sure are Tiring!

Today has been pretty much the same as yesterday, without much improvement. My tooth is still sore and face slightly swollen, my appetite is diminishing, I'm very tired and I'm pooing through the eye of a needle! Although I am remembering to breath deeply and I did have another shower this morning and felt much better for it.

I've had 10 hours of saline today (due to finish at around midnight tonight) to keep me hydrated as I'm no longer able to keep my fluid intake high enough manually. The drip is fine, a bit annoying when I try to make a dash to the toilet (I use the term 'dash' very lightly as I'm moving quite slowly at the moment), but apart from that it just sits next to me dripping away and I barely notice it any more.

I think my son-in-law brings out the worse in me as when he came to visit today we were talking about how this is the start of my new life and I realised it really is as I feel very much like a new baby; pooping, eating and sleeping!

Although my appetite is decreasing I'm still making room for my daily helping of ice cream at tea time, or as I have renamed it... ICE CREAM TIME!

Staff are still being fabulous and my visitors aren't too bad either! I had a goods night sleep last night so I'm hoping for the same tonight.

Good night and God bless,

John

(Secretary - Tizzy)

10th March - Further Turbulence

The day started with me waking up with the left hand side of my face doing a good impression of a hamster. It looks like a tooth on my upper jaw has gone bad - possibly aggravated by the chemo. Whilst not great they're not too concerned but they're checking me for mumps just in case!

However the less pleasant side effect of all this has kicked in... the dreaded diarrhea. The en suite bathroom that once seemed so close now seems oh so far. And when I do make it I've got a juggling act of getting each "sample" in to different containers.

Beyond that and the tiredness (and my noisy guests!) I'm feeling pretty good and two extra units of blood are helping too.

(Secretary - David)

9th March - A Little Turbulence

I gave the nursing staff a small worry in the early hours of the morning. My blood pressure had risen and my oxygen level had fallen to 90%, the nurses like it to be over 95%. This caused the head of the bed to be raised and for me to be given oxygen and the doctor called. The doctor could not find any under lying cause and took me off the oxygen. This morning blood pressure OK, temperature OK, but oxygen saturation down to 90%. I have been told to breath more deeply!!I am now practicing my impression of a steam train.The staff here are fantastic and not taking any risks so I am now waiting for them to do an ECG to confirm that all is well.
 Unlike the last patch of turbulence that was fast and furious this is obviously the beginning of the long, slow decline before I rise back up again. My appetite has diminished and I am absolutely exhausted.
However I am still in good spirits and know that in a few weeks things will start to pick up.
Knowing that so many of you are reading this and sharing the journey with me makes even the dark bits that much easier.

(Secretary - Mary)

8th March - First Day of a New Life!!

Well the air is still smooth, though I am getting ever weeker and considerably more tired, hence this is being done on the morning of the 9th March. Far too tired last night - was in bed by 8:30pm.

8th March was a "big" day as I had my bag of stem cells. To quote one of the sisters - "The first day of the rest of your life". A very strange experience when you think about it!!! Had a bag of platelets first.

I do appreciate all the prayers. This whole episode is just showing how powerful prayer can be!

7th March - Still smooth air

Today saw the end of the chemo, so no more interruptions every 6 hours, only the 4 hour obs. Mouth and throat are still ok. Started on tablets to bring down my immunity level - I think I see storm clouds on the horizon!!!

Tomorrow sees the introduction of the new cells. Maybe this is the time to say that if you do not hear from me on a particular day it will be because I am just too ill to type.

A lot of bed moving around today. I discovered that you are kept in a single room up until you are considered to be about a week from discharge. I guess there is a good psychological reason for this as well as making best use of through put in the ward, but I do like my single room.

Same round of visits from staff.

6th March - Still smooth air

Well the chemo is starting to take effect on me. Now very tired and fatigued. Had a shower this morning and only managed to get my bottom half dressed. Had to have a rest for 30 mins and then dress top half and shave. Appetite is diminishing, though I am managing to eat all my  meals.

The 4 hour Chemo session went well this morning with no after effects.

The morning was as busy as ever with visits from the doctor, dietitian, nurses delivering tablets, nurses doing ops, engineer checking water quality etc etc.

Tablet count is now 54 per day and I hope stable or am I being too optimistic!!!!!!

5th March - Still smooth air

Last night was a poor night for sleep and I have no idea why. Just one of those things I guess. I do hope for a better night to night, but maybe not - read on.

Today has been a hectic day. It started at 6:15 am with the introduction of chemo tablets and supportive drugs. There are a total of 8 tablets that I get every 6 hours, so that's 6 am, midday, 6 pm and midnight. Now tie that in with ops every 4 hours at 6, 10, 2 and 6 and you can see that getting any large amounts of uninterrupted sleep is going to be somewhat difficult.

7:15 am I started 2 units of blood which finished around 10:30 am. This was followed by a 30 min chemo, flush, 3 hour chemo and flush which was completed at around 3 pm. Then a dash down to Costa for a coffee with the family.

Add to this the doctor's round, the consultant's round, visit by sister, bed clothing all changed and bed remade along with room clean and man to check the water in the bathroom it has definitely not been a quiet morning!!!!!

My tablet count is now up to 38 and some are definitely of horse pill size. [No chance Mary would swallow them regards of how long she tried for]

The chemo is now doing its job, counts are dropping hence the blood transfusion and I am feeling more tired. I think only one or two more days of escaping  to the food court!!!!

4th March - Smooth air again

To continue yesterday's saga, I got a six hour saline drip into my line started at 10pm last night. I guess this with the previous 4 hour saline drip could be counted as refuelling in flight!!!! So at 4am I was woken to be disconnected from my drip and bloods taken at the same time. This gave be 2.5 hours of sleep time till next observations (obs) at 6.30am. Ops are at 4 hourly intervals.

Today has been a good day. After breakfast I had communion in my room and then started the chemo. This was a 30min run followed by a 4 hour run. This went well and no adverse effects were encountered. Staff nurse had previously assured me that what I encountered yesterday was normal for 90+ of patients and that it would not happen again - she was right!! Although nurse Mary and Tizzy were in attendance at the end, their nursing talents were not required.

As the chemo is now knocking my bone marrow, red blood cell production is decreased so my blood test this morning showed that I need another two units of blood, so tomorrow will be a busy day. I am so glad that they but two lines into the veins in the chest for a direct connection for delivering drugs and taking blood samples. Without it I would be a pin cushion. Let's hope that tomorrow we are still flying in smooth air!!

Tablet count for the day now stands at 23!!

3rd March - encountering turbulence

Day started well.... I had a proper full shower and then a lovely nurse took my blood, replaced my dressings and made me a wonderfully HOT cup of tea. I have to admit I planned these events around 10pm last night with said nurse and I love it when a plan comes together!

Everything was smooth until around 11.00am when I had a 30 minute chemo treatment followed by a 10 minute flush and then a 2 hour chemo followed by a 2 hour flush! Unfortunately, about half an hour before the end of the last heavy lot of chemo I got the shakes and got very very cold even though my temperature sored up to 38.2! I was shaking so much Tizzy threatened to get me a couple of symbols like one of those wind up monkeys! At the end of the chemo they gave me a couple of blankets to keep me warm but then I started to feel very unwell and .... ops... we all saw my lunch again! Nurse Mary and Nurse Tizzy were on hand to pass me sick bowls, stroke my back and pass me tissues. All the real staff were excellent too and reassured me that this was completely normal and not to worry.
I was then hooked up to the IV for 4 different drugs, including anti nausea, followed by a 4 hour saline drip.

I'm going to have this heavy dose of chemo (which more body clearly doesn't agree with) for the next 3 days. It looks like we've now firmly hit turbulence and I appear to be travel sick! The good thing is the sooner we start heading through the turbulence, the sooner we'll be out the other side of it and flying through clear blue skies once more.

I'm also now a human maraca as I'm up to 19 tablets a day and a daily injection in my stomach, as well as all the chemo and IV drugs!

Nurse Tizzy is moonlighting tonight as Secretary Tizzy and is typing as I dictate as I'm very tired and a little dopey! Thank you for all your comments, love and prayers, it really does mean a lot to me.
John
x

(PS any spelling or grammatical errors blame me - Tizzy!! x)

2nd March - Still a smooth flight

Not much to report.

Had a visit from the Chaplain - he could not recall the name of the person who suggested he visit me, so thanks to whoever pointed him in my direction. I have arranged to have communion in my room on Sunday as I have a sneaky feeling that I will not be let of the ward by then.

30 mins of chemo again plus the pills which I think increase by 2 tomorrow.

Managed to escape to the food hall for a latte, though I think that might be the last visit as I have 5 hours of chemo tomorrow and 4 hours each day up to engraftment on 8th March.

Is that storm clouds and turbulence I see in the distance!!!!!

1st March - Cruising at Altitude

Well it's St. David's day and as this Welshman is in hospital I hope a few of my readers will at least celebrate on my behalf and have a pint or two. I know there are a few out there who need no encouragement!!! Two of the nurses have Welsh backgrounds so we had a good chat on this wonderful day of all days.
Had breakfast complete with eight tablets - some looking like horse pills, dinner came along with it's two tablets, tea with just one and at 22:00 another four. That makes a daily total of 15.

Had a visit from the dietitian, seems I am being a good boy to date and eating all my meals. I have to record what I have for each meal and whether or not I eat it all. I am having to pay as much attention to my physical I/O as one does in computer programing.

Had another 30min session of chemo. Had a couple of visitors so a visit to the food court was in order for a Latte and a sit on the veranda in the late afternoon sun. All in all a quiet day.

29th February - climbing to alltitude

Feeling well, shoulder above where central line went is is less sore. Plenty of pills to take - shake rattle and (roll), anti sickness, conditioning etc. I think we are looking at about 10 a day - will try to keep a record tomorrow. Busy day with visits from nurses, doctors etc.

Had two units of blood today plus first chemo drip. I have to keep a record of my liquid intake and output for the full length of my stay - yes nice hospital bottles in use. Introduced to a nice little friend that will be with me for my stay - injection in the skin in the stomach, which is ok but stings like fury a few moments after it has finished.

Other good news is that Exjade will be started once the engraftment has taken and I am beyond 30 days from admission. So that looks like April.

Because of the Norovirus visiting is restricted to the hours of 15:00 - 17:00 and 19:00 - 20:00. Shame as visiting was all day with no visiting between 12pm and 2pm.

28th February - In the air

Well it was a bumpy take off. Arrived in time for bloods at 08:30 and then trotted around to have my line fitted. No can do as my platelets are too low. Also found out that as yet there was no bed available!!. So of to Haematology for platelets - at the other end of the hospital of course. Got that done had a bite to eat and was back at Vascular Access for my line insertion around midday. Got on the table in theatre to discover that radiographer was of to lunch. So around about 14:00 I got my line it. The relaxation drug is great - do not remember a thing, though Mary and Tizzy assure me I was as high as a kite when I cam back to the recovery room.

We are then informed that a bed would be available late afternoon or early evening. Eventually  on the ward at 19:00. Shoulder is very sore above where the line went in, but I am assured that this is normal.

I can see sleeping is going to be fun. Observations at 22:00; 02:00 and 06:00.  Although I am in a single room, the ward outside is noisey and my room is never dark.

The window in my room provides a nice view of a part of the hospital, tower blocks beyond and then Cambridge.

Have a transfusion this morning as my Hb is down to 7.4 and then that will be followed by the start of Chemo. On that subject I had some tablets last night and some liquid which really tasted gross and took many a glass of water to remove the taste.

Well I guess I am now really airborne and time will tell how bumpy the ride is going to be!!

27th February - Pre Takeoff

In preparation for tomorrow, a visit to the hairdresser felt the order of the day. No 2 all over - should make the hair falling out easier to cope with!!!
Bags all packed.

The wonderful Department for Work and Pensions sent me a Limited Capability for Work Questionnaire. What timing!! Anyway duly completed and returned. Anyone want to bet they call me for me for an interview whilst I am in Addenbrooke's or within four weeks of being discharged??

Week ending 25th February

Well I guess we are now at the end of the runway!!!

Wednesday brought good news - Bedfordshire PCT have at long last agreed to fund the use of Exjade to remove my iron overload. It would have been good if they had agreed this back in October as we could possibly have got rid of the excess iron prior to the transplant, but better late than never. Was it Addenbrooke's persistence or my MP joining the fray - I guess we will never know!


Thursday brought another raft of tests - lung function, x-ray and ECG - all ok.
Every bit of me has now been checked.

So in to Addenbrooke's and away we go on Monday!!!

I'll try and blog on a regular basis from here on in, but it is going to depend on how it all goes.

Week ending 18th February

Well we are now well and truly on the runway!!

Wednesday was a visit to the Haematology department at Addenbrooke's for a bone marrow biopsy (my third!!) and more bloods taken. Had a phone call from the BMT specialist nurse to tell me that I had passed all last week's tests with flying colours!!

Haematology tell me I have good hard bones - great for later life, but not so good for bone marrow biopsy!!

Thursday was a really eventful day. I met with Dr Charles Crawley and I now have a firm admission date of Tuesday 28th February into Addenbrooke's. Central line goes in that morning and away we go!! Dashed back from Addenbrooke's to Bedford for more blood tests and cross match ready for my transfusion on Friday. Now discharged from Bedford Haematology to Addenbrooke's.

Friday - Two units of blood and that should be my last visit to Primrose Ward in Bedford for quite a while. The Primrose ward is really wonderful. The staff are just great. Discharged from there to Addenbrooke's. Donor should have had his medical today.

Week ending 11th February

Moving further down the apron!!!

Wednesday saw me having a Abdomen and Renal Tract ultrasound at Bedford South Wing and got immediate feedback. We now know that I have the correct number of kidneys, that they are the correct shape, correct size, in the right place and that all urine is expelled correct. So that part of me seems to be working A1.

Thursday was an all day event at Addenbrooke's in the department of Nuclear Medicine. More tests on the kidneys by injecting me with a radio active substance and then taking blood samples every hour for a period of 3 hours to check kidney function. Once this was finished it was injections of some marker into each arm and then 30 minutes later photographs of my heart. This is getting more and more like a major car service!!

Week ending 4th February

The last of the quiet weeks for quite some time to come.

Wednesday was a visit to the haematologist to discover I had a Hb of 6.8 which is not brilliant [normal male is 13.8 to 17.2]. Thursday was an early start at 08:30 for a whole day in the Primrose Ward at Bedford South Wing having three units of blood. Since diagnosed I have now had a total of 44 units of blood. Bedford PCT turned down the appeal from Addenbrooke's for the Exjade, though they did agree to the version that could be delivered by pump over an eight hour period. Unfortunately this is not clinically suitable for my condition so yet another appeal.

My neutrolfile level is about 0.26 and for a healthy person it should be around 2.5, so my immune system is shot and I am very susceptible to infection.

Looking at my appointment schedule for this week and the next two it feels like I am on a flight - just left the boarding gate, on the apron heading for the runway. Let's hope the flight gets airborne week commencing 26th February.

Go for Transplant

Just returned from Addenbrooke's Hospital with some good news - we are go for a bone marrow transplant!!!!!

Earlier this month we had confirmation of four possible donor's of which one looked a good with a 9 out of 10 match on the initial tissue screening. The high resolution scan has been completed on the samples from this donor and we have a 10 out of 12 match. This is in fact better than it sounds. Apparently there are two markers that transplant consultants feel have no impact on transplants and it is these two markers where there is a mismatch. From my consultant's perspective we have a 10 out of 10 match and we are not going to do better.

We now have a timetable of events leading up to - wait for it - a target admission date of somewhere during week commencing Sunday 26th February.

February will now be a very busy month:-

10th February a day in the Nuclear Medicine Department having heart and liver tests. Got to be at the hospital for 09:00 and based on the last two runs for 09:00 appointments it looks like a 06:00 departure from Bedford. Yes it is only 30 miles but you should see the traffic!!

If your pregnant give me a wide berth until the 11th.

15th February bone marrow biopsy - all say OUCH!!!

23rd February lung tests and clinic appointment - hopefully will get actual admission date.

Still waiting for Bedfordshire PCT to come to the party?????? and provide the funding for the drug (Exjade) I need to remove the excess iron from my body due to the amount of blood transfusions I have had. This problem seems to have been elevated in Addenbrooke's with an aim to provide the drug to me after the transplant.

I have avoided colds/sickness since October 2010, so have just another month to stay infection clear. If you have any bugs or been in contact with anyone ill please stay well clear of me!

Background

On returning from a business trip to Hong Kong in October 2010 I visited my doctor as I had a stinking cold that would not shift (I don't get colds) and I had chest pains. Having had stents inserted in an artery some seven years previous my doctor called for a complete blood check. Within a week I was in Bedford Hospital being told that I had a form of Myelodysplastic Syndromes (MDS). I was referred to Addenbrooke's Hospital and in February 2011 my disease was narrowed to myelodysplasia and that I would need continuing blood transfusions. This results in a visit to Bedford Hospital ever two to three weeks for two or three units.

The long term prognosis was not good and so I was referred to Bart's in London as a possible candidate for the Revlimid clinical drug trial. Anything was worth trying at this stage for a few extra years. Results of the tests prior to entering the trial in May 2011 changed my diagnosis to Chronic Myelomonocytic Leukemia (CMML).

After much discussion as to whether Azacytine was approved my NICE for my particular variant of CMML; it transpired it was not; I was recommended for a bone marrow transplant in September 2011. In October 2011 I was accepted on the bone marrow transplant programme and a hunt for a donor started.

At the same time the battle started with Bedfordshire PCT to get a drug (Exjade) that is needed to remove the excess iron from by body caused by the multitude of blood transfusions. The first application was refused and an appeal has now been launched.