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.