Getting ink done

This machine is called a CT Simulator, it's used to line your body up using lasers to create the target area for radio therapy. When the operators have identified the correct position(s) they mark your body, in my case permanently, with 'tattoos'. I was going to publish a picture of me in situ by decided against a picture of my naked butt going out accross the internet, we'll save those for our 'private' collection. I have always quite fancied 'getting ink done' but didn't anticipate the NHS paying for it!

This week has been fairly busy, it started on Sunday with our oldest daughter's 30th birthday, on Monday we had some good friends round for lunch and went for a walk in Knole park, They gave me a present which appealed to my softer side (something I didn't know I had).

Tuesday saw 2 more friends visiting from work they brought cards with get well messages and something I absolutely didn't expect, a collection. For any of the contributors reading this blog I have bought the top of the range Kindle as I love reading and expect to do a lot of it over the coming months. Once again I am bowled over by everybody's generosity and friendship. I will, of course, be writing a more personal thank you to those lovely people.

All through this week I have suffered with dehydration, particularly in the morning I have taken a rehydration treatment as recommended by my stoma nurse and this has re balanced my fluids. It's quite important to not just drink water when I feel like this as it flushes me through and exasperates the problem.
Another trick to slow down digestion and ensure I get the most out of my food is to eat marshmallows or jelly babies as the gelatine slows the process (who would have believed that eating sweets is good for you!).

On Thursday Stella and I went to Joe Allens (Exeter street) for lunch, this was a major achievement for me as it was the longest time I have been out since my stoma operation and involved a train journey, a brisk walk and a meal in a restaurant. It was a great 'date' and did wonders for my personal confidence.

Back to Friday and the top of this blog.

Shower

I found out this morning why it's not a good idea to shower after breakfast. Still it was all easily washable.

Note to self; Always shower first thing!

Nuclear medicine start up

 Received two the two letters detailing my Chemo/Radio therapy appointments yesterday. I have a Chemo appointment on the 11November and Radio therapy appointments starting on the 15 November every day, Monday - Friday until 19 December. I think I'll end up with Christmas off and the major operation (stage 3 in previous post) early in the New Year.

In all the appointments the one that worries me most is a 30 minute meeting in the 'quiet room',  I dread these meetings! You think they could come up with another name for the room 'the bad news room' would at least be more honest.

Elsewhere, I switched on the TV to watch MotoGP today and learnt of the very sad death of Marco Simoncelli he was, most definitely, a future champion.

In other news

Stella and I went for a picnic in Knole park in the week, custard tarts and  fizzy water, it was a beautiful day and we went to our favourite spot, out of the breeze and in the sun. I can't believe how grey my beard is considering I still feel 25!

Also this week 2 of our older daughters independantly had minor road accidents, thankfully no one was hurt but the cars were bent slightly out of shape. These events show that the world still turns, one can become a little self obsessed in my circumstance.

Treatment details and time scales

Good wish texts, blog comments and get well cards continue to roll in. I am astounded by the love and support of both friends and family it truly lifts my spirits.
For clarity I am going to explain my treatment and the time scale involved. For simplicity's sake I'll break it down into stages.

Stage 1: Colostomy/Bypass operation.
This was done on the 12 October for 2 reasons; 1 to make me more comfortable (which it has) and 2 to bypass the cancerous bowel area. This will avoid complications that could arise during radio/chemo therapy treatment.

Stage2: Radio/Chemotherapy.
5 Weeks of Radio therapy simultaneously supported by Chemotherapy (tablets not intravienous supply). This will kill the cancerous cells but will also damage healthy cells in the area, although these will heal.
All this treatment will require time to heal and settle before moving to the next stage.

Stage 3: Surgery to remove the now dead cancerous mass and rejoin the bowel.
This is the largest surgical operation I will have and will take between 4 - 6 weeks to recover but all the cancerous material will have been removed.

Stage 4: Reversal of the colostomy.
This is the last stage and can be upto 12 weeks after stage 3.

The whole process will take 6-7 months, bear in mind the treatment has already started so this (October) can be taken as the first month.
I could return to work/normal life between between stages 3 and 4. Stage 4 is the least intrusive so recovery should be fairly brisk.
All things being well I am hoping to return to a normal life early spring 2012.

Cancer - The up side

I found out today that I am exempt from prescription charges for the rest of my life (I intend this to be a very long time!). Wahay!!

Home - week end catch up

Stella has updated this blog while I have been in hospital so I am just going to put a few sentences down from notes I made while I was on the ward:

12 Oct: Had the (stoma) operation this afternoon, Stella left me just before I had the anaesthetic, came too on Pye Oliver ward at Maidstone hospital I couldn't eat anything but had a comfortable night: Thank heaven for Morphine!
Mananged to walk to the loo in the night - good effort!

13 Oct: Stoma seems to be healing fine and passing 'matter'.
Showered myself this morning that felt great!
Had a chat with the stoma nurse, changed my bag with help and successfully cut the hole in a new bag.
Both my cancer nurses popped in to see me today they were, as ever, very friendly and supportive.
Mum and Dad rang and I was able to have aconversation with them. Stella came in at Lunch time, it was good to see her again.
Stomach feels tender but not too uncomfortable, the morphine is wearing off.
LOADS OF VISITORS in the afternoon and evening.

14 Oct: More pain today as the morphine continues to wear off, feeling more bruised.
Should be going home tomorrow (Saturday)depending on how much matter I pass (less than 1200mm in a 24 hour period). Feeling more tired today although still managed a decent shower, took my bag off for it - a first!

15 Oct: Produced matter from both my 'tail end' and through my stoma - extraordinary experience. My consultant explianed that this would happen until the remains of matter left in my unused section of bowel was clear.
Going home, Stella is picking me up - I could cry! All the staff have been wonderful and the food is good but I can't wait to be home. I must ask the visiting stoma nurse about some kind of 'girdle' support for the bag to take the weight off my bruised and distended stomach muscles.

17 Oct: Moving about more at home has made me a bit mored tired than I anticipated and I have produced more matter from both ends, I spoke to the stoma nurse on the phone today, she told me that this is to be expected and is perfectly normal - phew!

Yum! Hospital Food

I went to see John today. He's in fighting form and good spirits. The chicken casserole tasted good....And I brought him jellies. Believe me you have never seen anyone so excited to see jellies!!

Update from Stella

Subsequent to John writing his short blog update I noticed a familiar willowy figure of a woman report to oncology reception. It was the wife of one of John's old colleagues from his Larkfield days in Kent Fire Brigade. I smiled over at her but she seemed not to recognise us so we went over to say hello. "Hello. Jackie?" said John. "Yes" said Jackie quizzically. "It's John.....John Day". Then she recognised us and we kissed each other on the cheeks. We can't have seen her for at least ten years but sometimes time just seems to melt away. Dave her husband came in afterwards (he'd been parking the car) and we must have chatted for a good hour. Jackie has begun her second fight with breast cancer.....this time the other breast. She's risen to the challenge and is looking fantastic. What an inspirational woman!
Finally we were called back to the admissions lounge where John's particulars were all taken down again. He was given his gown, a pair of paper pants and a pair of white support stockings. (I have photos....tee hee). After a short wait (which I'm sure seemed interminable to John) we were called to theatre reception. John's surgeon appeared in his theatre blues and then at about 12.40 I said goodbye to John as he was taken by the hand and walked to theatre. I was told the operation would only take about half an hour and decided to visit with John's parents who live close by and give them a progress report.
I phoned the hospital at 2.10 to hear that John was still in theatre. That had me worried and I asked them to ring me on my mobile when he was out of theatre. I went for a walk and at about 3.00 they rang. John was in recovery and all went well. They told me to ring the ward a little later to see if he'd arrived there. I rang about 4.00. John was "resting". I saw no point in visiting him and went home.
John's parents went into see him at 6.30. He's well but woozy. That's about all I can say. The main thing is the treatment has started and every day is a day closer to getting this whole thing over with. I'll be updating the blog for a while but I suspect John will be out of hospital asap.......Saturday, I reckon.
Thanks for all your support guys.xxx

Colostomy Day!

John wrote this piece as we waited in oncology reception having been through the Admissions Lounge.
"We arrived at the hospital at 07:11 hrs and booked in with admissions. Both Stella and I were bemused by a bizarre meeting with my consultant, his registrar and the stoma nurse which took place in a small kitchenette just beside the nurses' station. We sat on chairs and the consultant perched on a kick-stool. The operation was described in gory detail and we were given instructions and booklets on how to manage the stoma. Nothing too daunting!
I have been marked with indelible marker by the stoma nurse who makes the recommendation for the best place for the stoma to go. She made marks on the left and the right approximately mid-way between the belly button and the hip bone. X marks the spot!
Met with the anaesthetist who went through all that he would do: he says that he will make me feel as though I've drunk 2 pints of Harveys...can't wait.
Everybody is very friendly, helpful and supportive. They do inspire confidence."

Operation Brought forward

My colostomy operation has been brought forward to tomorrow (12th October), someone has pulled out and I was on a short notice list. The hospital contacted me today and it's been a bit of a rush but I have to report to admissions at 07:30hrs.
This is a significant step as it brings the whole procedure forward by at least 2 weeks.
The fight back begins here.

First steps back

Had confirmation of my stoma operation today, 26 October, I have an appointment to discuss stoma management on the 19th.
I would have liked the operation sooner, I was pencilled in for the 19th, but these dates are confirmed and I will receive the confirmation letter this week.

Getting deeper in the maze

Had my appointment with the radio therapy doctor on Friday, this was both good and disappointing news.
The (very) good news is that my lungs and liver are clear of cancer. The disappointing news is that rather than 5 days radio therapy followed by surgery to remove the tumour I will have 5 weeks radio/chemo therapy, rest and then surgery.I have elected to have the stoma operation before starting the radio/chemo therapy as this will prevent potential problems and help smooth the whole process from begining to end.
The time scales involved with this new approach are much longer, this was a bit of a body blow to my spirit and although I understand the sound reasoning behind this change I still felt very low on Friday evening.

Saturday brought time to reflect on the situation, a more positive outlook and a discomfort free day!

I also received my third cancer present, an impossible puzzle which my 7 year old daughter cracked first time.

I notified work about the change in procedure, they have been very supportive and understanding.

Sunday brought a lot of discomfort in my bowel and real pain (for the first time) I took some pain killers and am using an over the counter IBS treatment- Buscopan- this combination eased the pain and discomfort considerably.
I am trying to up the amount of water I drink as this seems to help "flush" me through.

Bike ride

Managed to get out on my mountain bike today for the first time in months. I've not felt comfortable enough to do it recently but it was great to get out. The weather was perfect and the changing autumn colours looked spectacular.
I will try to get out again before my radio therapy and surgery starts next week.

Had a particularly uncomfortable night last night. I think when I eat is crucial to how comfortable I sleep. I'm not going to eat much after lunch today to see if it makes a difference.

Had confirmation of my radiotherapy appiontments yesterday, this means that the surgery that was only pencilled in for the 19th will go ahead. This is good news.

Received my second cancer present yesterday,art equipment, I haven't painted for years but as I am going to have some spare time I think I'll start.

Receiving lots of good will messages from friends at work. These are very important to me.

Slept well through the night last night, this the first undisturbed nights sleep I have had for a couple of weeks.
Generally I feel very tired by about 8 oclock in the evening.

Everybody knows

We went out to dinner at a friend's house last night and I received my first 'cancer' present, a juicer, I can't wait to give it a try.
I weighed myself - 13 stone exactly.
Finished telling family and friends today (Sunday), I found this very distressing and the hardest thing to do so far. All have been very supportive both emotionally an practically offering lifts to hospital etc.
I feel the more I talk about having cancer the less it has the power to scare. That said I feel as though I am paddling my surf board 'out back' in complete calm oblivious of a monster sheet of glass bearing down on me. Ignorance is bliss!