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