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.