DAY 10

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DAY 10

Energy level: Bouncy
Attitude: Optimistic and happy
Physical Condition: Pretty good - but a bit of a sore back

Wow - here I am into double figures and at the end of my second week. That flew by pretty quickly!
Today's visit to Radiotherapy was fast and efficient as usual. No more pain in the throat or neck yet. I even got more stickers - another smiley face and four silver stars. They made me happy :-)

I had a bit of a sleepless night as my back and legs were aching. I'm not sure what that was about but it's still a bit painful. I have my heated wheat pack on it now and have taken a few painkillers. Hopefully it will go away. I think that as long as I don't get a temperature I'm okay.

I have learnt a new phrase though: Neutropenic Sepsis. I have to carry a big red card with me everywhere saying I am at high risk of developing it because I've recently had chemotherapy. Basically it means that my own natural defences against infection have been destroyed so if I catch anything it is going to be serious unless I get some antibiotics quickly.

That's why I have to take my temperature each day - if it ever gets above 38degrees I have to go into hospital. It was 37.3 last time In took it :-) All is well.

While I've been going through all this I have found it helpful, comforting even, to read other people's journeys through cancer. My favourite one is Writing My Way Through Cancer by Myra Schneider.
I even emailed her to tell her and she has kindly emailed back a few times to encourage me :-) She has also given me permission to reproduce her poem that I liked in full - so here it is:

WHEN IT'S ALL OVER

I'm going to throw open my windows and yell: 'halleluiah',

dial up friends in the middle of the night to give them

the glad tidings, e-mail New South Wales and Pacific Palisades,

glorify the kitchen by making sixteen summer puddings,

watch blackberry purple soak slowly into

the bread and triumph over the curved glass of the bowls.

When it's all over I'll feed my cracked skin

with lavender and aloe vera, lower my exhausted body into

foaming suds scented with honey and let it wallow,

reward it with a medal, beautify it with garlands of thornless roses,

wrap it in sleep. Then from tents of blurred dreams

I'll leap like a kangaroo, spout like a whale.

Once it's over I'm going to command my computer to bellow

'Land of Hope and Glory,' loudspeaker my news

down these miles of orderly streets where the houses wear

mock Tudor beams and plastic Greek columns, dance

the Highland Fling in front of controlled tubs of cockerel geraniums,

sigh with enormous satisfaction when I make the evening headlines.

When it's finally over I'm going to gather these fantasies,

            fling them into my dented and long lost college trunk,

                        dump it in the unused cellar       

                                    climb back to strength

                                                up my rope of words.

                                                        Myra Schneider

Writing My Way Through Cancer  Jessica Kingsley (2003)

Multiplying The Moon  Enitharmon (2004)

Reading her book not only tells me what it was like for her to go through radiotherapy and chemotherapy in her treatment for breast cancer, but also - being a well-known and published poet who runs so many courses and workshops - she also explains how writing can help you through something like this and gives tips on how to get started. Now, I am no poet, but even I have been inspired to give it a try!

One of her techniques is "dumping" where you get all the negative and angry thoughts out and onto a page, Another idea is making lists - where you can list everything that is bothering you - or, as above, everything you're going to do when all this hospital stuff is over!

This is what I came up with on my first attempt:

Torture

First we're going to fillet your flesh, like a butcher
Leave you disfigured and unable to speak as you did
That smooth white neck wil be crisscrossed with red
Then we'll inject you with poison,make you sick as a dog and sore
Bruises will show on your skin with no provocation
or warning. Your hair will leave in disgust at the sight of you
You will grow thin and gaunt

We will force our instrument down your throat
like we're teaching you sword-swallowing
We'll attach a cheeswire, make a hole in you
and saw you in half from inside, a neat trick eh?

Then we'll burn you with our sinister rays
over and over again until you can no longer swallow
and your skin is raw and angry
But you can't be angry
This isn't covered by the Geneva Convention
You lie there and take it.

Then, we'll have saved your life

"Thank-You"

DAY 9

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DAY 9

Energy level: Bouncy
Attitude: Optimistic and happy
Physical Condition: Tingly outside, not so sore inside

Yesterday I had thought that the dreaded sore throat had started as it had felt a little painful during the evening and last night. Once it starts it will only get worse day-by-day as I go through radiotherapy. However, as the day has gone on it has disappeared. I am still able to eat anything I want, as long as it still tastes nice of course. Last night we really fancied pizza and treated our selves to a Domino's Delivery. But my usual favourite of ham, pineapple and chicken just didn't taste right.

Anything with fruit in it is usually pretty good though - I really enjoyed a toasted teacake for breakfast this morning.

It felt a bit cooler when we went out to the hospital today, but not that cold. We are still hotter over here than most places on the Continent :-) I arrived early as yet another member of the Dressing Gown Club completed his last session. You can always tell - as there is a new box of Roses on the magazine tables.  I didn't have to wait long before being called in and completing my session number 9. I feel like a bit of a newbie at all this. Imagine reaching my 33rd session. I can't imagine how I'll be feeling by then but it will be a big relief I'm sure.

Today's tune was an awesome one - the classic Virginia Plain by Roxy Music. By the time I'd finished tapping my toes to that, I was done.

Once I'd been toasted I was asked to go up to the other waiting room as I was due to see the dietician again. Catherine said that I seemed a lot more bubbly than last time she'd seen me. Although to be fair I had just thrown up last Thursday when I had to go into her consultation room.

Anyway I told her I was feeling better and had got my appetite back. She weighed me and I'd only lost one pound this week. She seemed pleased with that - although frankly if this had been Weight Watchers I would have been pretty disappointed :-) Anyway the upshot is that I don't have to use the feeding tube yet - I am coping fine on my own. Thank goodness....

Before I go let me share this link with you:

http://www.washingtonpost.com/blogs/rosenwald-md/post/who-is-the-route-29-batman-this-guy/2012/03/28/gIQA8nPjgS_blog.html

It's some thing that Nathan showed me today and I read the whole article and it brought tears to my eyes. Like I said before it's the little things that mean a lot :-) What a nice chap.

DAY 8

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DAY 8

Energy level: Almost bouncy
Attitude: Optimistic and happy
Physical Condition: Tingly outside, sore inside

You'll never guess what I got today!

Stickers!!

Another beautiful Spring day, another visit to the hospital. I had noticed, with an envious eye, that the Dressing Gown Club always emerged from their machine with their yellow appointment cards festooned with stickers.

One even said the other day  "Look - I got a football today to commemerate Crouch's great goal at the weekend!"

Mine was depressingly bare and plain. it seemed like they were having more fun on their side. But then I went in today and the radiographers were different! There were four of them too. I went through the usual, took off my glasses and cardigan. Pushed down the straps of my vest top (the fashion-wear of choice for radiotherapy patients.) and lay on the paper sheet on top of the bed. They fitted the mask and all retreated when the buzzer sounded. I listened to the song of the day: Johnny Cash - I Walk the Line. I quite enjoyed that one - a story of how a man can be true to the woman he loves.

Anyway, I jumped off the bed when they released me from the mask and when I put my glasses back on I saw that they had given me two stickers on my card!

I was over the moon :-) I got a smiley face and a cute cat one that says "very good" Heehee - it's the little things that mean a lot.

DAY 7

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DAY 7

Energy level: Improved (even more)
Attitude: Optimistic and happy
Physical Condition: Back to normal

First of all I want to say "Happy Birthday" to Nathan - you are the best partner anyone could ever have  :-)

Today was an early visit to the hospital and there were even more members of the Dressing Gown Club around at 9am. In fact there were so many that some were using LA3 (my machine) as well as LA4. I was very taken with a red silk number I spotted waiting on the sofas. Luckily I didn't have to wait long for my turn and it seemed to go even quicker than usual - in fact I hadn't even had time to work out what the song of the day was.

It was still chilly outdoors first thing, but it soon warmed up once we got back home.
Everyday the postman brings something different and new. In fact I thought even he was early this bright day, but the first time I rushed to the door on hearing a clunk, it turned out to be a menu from the local kebab house. 30% off everything on Tuesdays though so I was tempted.

When the actual post did arrive I got a card from Auntie Lorna, who I haven't seen for a long time. It was lovely of her to remember me, as she was an auntie-in-law really. It was a lovely letter. Aren't people kind?

Later Tracy came round very briefly (as I'm "at risk" from infections this week, due to the chemo, and am not supposed to see anyone) and brought a great Thank-You card from Caroline and the Keele Poets at Silverdale. It was the end of their academic year and they won't be back in the library until October. Also included was one of their booklets: Keele Drafts. I had a very pleasant afternoon, on my swinging seat in the shade, reading the poems these talented poets had written. Sipping my ginger ale, ice clinking gently. I especially loved the limerics, in tribute to Edward Lear's 200th anniversary. Funny stuff :-)

I have been having a craving for chips and mushy peas for some days now and I couldn't resist the urge any longer. So, this evening we had a little stroll to the Porthill chipppie and purchased some. Now, there was a chance that they wouldn't actually taste as good as I was imagining they would, but it had to be done.

I have to report that they were delicious, and I kept pinching some of Nathan's too when he wasn't looking :-)

DAY 6

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DAY 6

Energy level: Improved (LOADS)
Attitude: Optimistic and happy
Physical Condition: Getting back to normal

I was good on the Radiotherapy Machine today - so I got a lolly!

Hello

Hasn't the weather been gorgeous? I even had lunch outdoors today - on my swinging seat protected from the sun with a canopy and my trusty scarf!

Today I remembered that I was meant to go for Radiotherapy at 2pm - so did turn up at the correct time. There is a large waiting area for LA3 and LA4. It seems that LA4 is for the prostate gentlemen - or the Dressing Gown Club as I shall now call them. Everytime I sit down in the waiting room I am confronted by a row of hairy, varicose-veined, white legs sticking out from a row of dressing gowns.It's like Ernie Wise all over again - and I thought I looked funny in my mask!

I have to say that there was a nice selection today - a purple velour one and a blue checked one whose owner had seriously tried to match the socks and sandals to it as well. Very dapper. They are a jolly bunch, as I guess they meet every day - same time, same place.

I know they are prostates as my dad had to undergo the same thing five years back, and he had a whale of a time. He's still in touch with most of the blokes he met and they are all getting on fine. Isn't medical science wonderful?

There aren't many people who sit on my side though.
There was a bit of a delay today, not sure what, but when I went in for my session I was given some kind of detector which they wired up to my mask. perhaps they needed to check it was giving the correct dose or something. Today's musical pleasure was Cat Stephens' Morning Has Broken. Very soothing, as I tried to remember the words. By the time he'd finished warbling about blackbirds I was being unclipped from the mask and was on my way back into the sunshine.

We treated ourselves to an ice lolly and sat outside before going home :-)

Now that my appetite is returning I find myself craving some very strange things. Mainly fresh, fruity things. I was dying for some grapes, and since we had none in I found at the back of the cupboard a big old tin of rhubarb. I'd pretty soon got that open and it was delicious! Then Laura brought me some small, black grapes from the Co-op and they are the nicest grapes I've ever tasted!

Some things I crave but when I get them they taste odd. I really fancied some Fig Rolls but when I bit into one it just didn't taste right. I was feeling energetic as this afternoon I made a cottage pie. I really wanted some onions, and it was delicious when I'd done. In fact things with gravy and mashed potatoes are meant to be good for me right now.

Not really fancying chocolate much though - it's so thick and claggy.... what did I ever see in it????
In fact next-door's brought round a box of Thornton's and a plant as a thank-you present because we'd allowed them to put some scaffolding out front on our pathway. I tried a chocolate - but to tell you the truth the plant looks more appetising :-)

DAY 5

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DAY 5

Energy level: Improved (slightly)
Attitude: Optimistic
Physical Condition: Still tired and nauseous and bionic!

I feel like the Bionic Woman - now that I have a syringe driver to add to my high-tech add-ons. Luckily it is in my right arm so I can still sleep on my left side. I have managed two nights without dislodging it and setting off it's (very insistent) alarm!

Bionic Syringe Driver - dinky eh?

I did notice that  it was made in Lichtenstein and the DN says that they cost many hundreds of pounds each - so I feel lucky.


Yesterday was DAY 5 of Radiotherapy and I made a bit of a faux pas - I turned up at my usual time of 11.50am - then when I looked at my appointment card I saw that we were meant to be there at 2pm. Very slightly early then :-)

I knocked on the Staff Room door and the lovely radiographers said not to worry they would fit me in. Withing a minute I was lying on the machine with my mask fitted snugly round my face. They had a nice selection of Tamla Motown music on - including Dancing in the Street - Martha and the Vandellas I think? I felt like dancing in the street knowing that Week 1 is over and I have the weekend off! Woo!


I have been craving normal and boring though. I was thinking how wonderful it would be if I was bored or hungry or anything normal! Instead of queasy and exhausted and restless. Bring on normality! I would LOVE to be at work today just being my normal self. Chatting to customers, straightening books and eating cookies with Tracy.

DAY 4

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DAY 4

Energy level: Improved (slightly)
Attitude: Optimistic
Physical Condition: Less tired and nauseous

Well I think that the syringe pump was a great success - except for at 5.30am this morning when its alarm went off and wouldn't stop. I think I had turned over in my sleep and somehow dislodged the syringe a little. Poor Nathan had to call the District Nurse again - but she soon came and fixed it. A quick reset - and a lot more paperwork and we were able to go back to sleep! It was one of the best nights we've had recently.

So I haven't been sick since they attached me to this - and as a result I've actually eaten a bit of food. I had some Slimfast for breakfast - banana flavour! Yes I know it's for slimming and I'm not supposed to be doing that - but it is a meal in a glass and goes down quite easily.

Then I had cornflakes for lunch and a cup of tea, and tonight |I've actually had pizza and some of Laura's delicious chocolate banana pecan cake. Yummy. It's all about the banana it seems :-)

What a gorgeous day too! We went off to the hospital around 11.30 - went in for my appointment at 11.50 and I was out in 7 minutes! All very quick and efficient. Then we opened the patio doors at home and llet the sunshine in. Another DN came to change my syringe - to last another 24 hours, so I will have to be careful how I sleep tonight!

DAY 3

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DAY 3

Energy level: Dipping
Attitude: Optimistic
Physical Condition: More tired and nauseous

It's been quite a busy day. Firstly I had two more visits from the wonderful District Nurses during the night - due to continuing sickness. More injections in the thigh :-)
I was worried again about going for Radiotherapy feeling so sick - but managed to get through it again. It was pretty quick. I was called in to the the Dietitian first, so she could weigh me. I seem to have lost half a stone since this all started. She told me about feeding through the alien - I mean the PEG - seems you can inject it in yourself with  the huge purple syringes or you can get a pump that will deliver the food to you during the night.

I can't really say that I fancy the night-time option.

Then, while we were at the hospital Nathan persuaded me to go up to the Chemo Suite to ask if they could change my medication for the sickness. I saw a lovely Nurse-Practitioner called Racheal who prescribed me a Syringe Pump - that would continuously pump into me the stuff that I've been calling the District Nurses in to administer every 4 hours.

Lovely Nathan went up to the pharmacy to get all the drugs etc and we went home to await the DN. She arrived - with an assistant and they put a needle under the skin of my arm and attached it to a line - then a syringe which is controlled by a battery-operated unit. Pretty clever.

She came back later with a kind of groovy shoulder bag that I can put this in when I am walking around.

So I am hoping that a continuous stream of this drug will help. I have actually eaten some solid food tonight - so wish me luck!

DAY 2

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DAY 2

Energy level: Depleted
Attitude: Optimistic
Physical Condition: Tired and nauseous

What a difference a day makes (as the song goes) By the time I went to bed last night, I had developed a ferocious headache which kept me awake most of the night. Then this morning the vomiting set in - even though I had taken the tablets they told me to. It was pretty early, about 6am, then another bout around 8am so Nathan called the Emergency Nurse. It had said to do that if you were actually sick.

She arrived with an assistant and gave me an anti-sickness injection, which seemed to settle things down a little. What I was fretting about was having to go for my Radiotherapy session this morning, feeling like this. What if I felt sick whilst wearing the mask strapped down to the table? It didn't bear thinking about!

So I rang them and explained and asked if they still wanted me to come in? They were very definite - YES. I have started so I have to finish it seems :-)

So, feeling still very nauseous, we set off for the hospital at 11.20. I was called in more or less straight away and luckily I was alright while I was on the table. They completed the treatment in about 10 minutes. No music this time - maybe they just do that for newbies - to relax them :-) I got out of the room, then had to,  ahem, "make use of their facilities" for another bout of sickness. I got to see a nurse there who reassured me that it wouldn't last much longer. In another 24 hours I should start to feel a bit better.

Managed to get home okay - luckily for Nathan's car :-)

Maybe I should try the remedy suggested by my American friend - yellow mustard. Thanks for that Susan - I will give it a go when I can stomach some food!
Now I just need some sleep.....

DAY 1

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DAY 1

Energy level: Bouncy
Attitude: Optimistic, excited, a little nervous
Physical Condition: Pretty strong and healthy

Got to the Cancer Centre before 9am and they were waiting for me! I was whisked straight into LA3 - my own machine - to whip off my top and lie on the bed. I was a little embarrassed when I got on facing the wrong way. It seems the actual machine points the opposite direction from the Simulator. *awkward*
Once we'd got me the right way round and I was shuffled and prodded into position the technicians left the room, a buzzer sounded and the music came on.

The machine was whirring and the bed moved a little but there were no bright lights. So I lay there patiently and concentrated on the music. How nice of them to tailor the music just for me! I kept hearing:

"..for the very first time, the very first time."

It was Roxette and the words went very well with the occasion:

"like a break in the clouds
And the first ray of sun
I can feel it inside
Something new has begun
And it's taking control
Of my body and mind"

Then the next song on went:

"Solitary brother
Brother
Is there still a part of you that wants to live? I realised it was Seal with "Killer."

I was beginning to see a pattern and I think they must have bought  That's What I call Radiotherapy 12 - it was awesome.

I was just beginning to wonder when the machine would start up when the staff came back in and told me it was done and I could go.

Time to sprint up the stairs, past the wheelchairs with the names Dick and Harry on the back - and wonder where Tom had got to, and get to Chemotherapy. They waved me through to the Suite and I sat in the recliner that was waiting for me.

Sarah looked after me all day. She put a canula in the back of my right hand. Put up a drip to flush out the vein, then put a 2 hour drip full of saline to hydrate my kidneys before the chemo proper went in. I sat in the recliner with my guilty pleasure - I'd bought two glossy, girly magazines to read - while it all went through and I chose my Spring/Summer 12 wardrobe :-)

I was also given a chart to record all the drinks I had (mugs of tea - 200 ml, glass of water 180ml) and how much urine I managed to pass out. There were measuring jugs in the loo! I was shown how to disconnect the drip from the power and and left to it. Lovely Nathan stayed for a while to keep me company before he had to go off and do some work.

Then it was time to get the Cisplatin out - it was in a bright red bag with all kinds of danger warnings on it. Firstly she used my canula to squirt some anti-sickness medicine and some steroids to help that work. She said the steroid injection might give me a prickly feeling in my bottom - but I am disappointed to report that it didn't!

Then a half-hour bag of Manudol, which Sarah explained was like a water tablet and would make me go to the loo more. This is a GOOD THING - as it gets the poison out of my kidneys pretty quickly.

This was actualy painful though as it was going through. She said it would make my arm ache - no idea why. Still - they had something for that too. I was given a mini electric blanket for my arm :-) it was lovely!

Once that was done it was time for - the CHEMO. She put the red bag up and clicked the button and it started it's drip, drip. drip into my arm. Three hours of it. Sarah said I had to tell her if I felt ill at all. Then they brought lunch :-) I was feeling fine and had a jacket potato with cheese, some lemon sponge with custard and apple juice. I really enjoyed it too.

Three hours later the drip beeped and I was still feeling absolutely fine. Another 2 hour bag of saline, with added potassium and magnesium for the kidneys and I would be done.

It was five thirty and I had completed my first chemotherapy and felt just as good as when I went in.

That is HALF-WAY through my chemotherapy :-)

I have a bag full of different drugs to take at bedtimes, before meals, after meals to keep the sickness at bay.

Back to Radiotherapy at 11.50am tomorrow for DAY 2

Contemplating Chemo

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Well tomorrow I start 6 weeks of radiotherapy. Also for good measure - they are throwing in two cycles of chemotherapy too. Free of charge! They say it will increase the effectiveness of the radiotherapy.

As I said last time, I am really pleased that they have decided to only radiate the right side of my neck - and leave the back of my throat and left side alone. This bodes well for recovering taste after all this is over.

So I am not too worried about the radiotherapy right now. Apparently the first two weeks are a doddle - so I'll worry about that later.

The biggie - in my mind- is the first cycle of chemotherapy, which also starts tomorrow.
So the plan is to pop into radiotherapy department at 9am - get my 10 minutes under the sunlamp - then sprint upstairs into the chemo suite to have that administered. That is going to take up the rest of the day!

They are going to give me Cisplatin, which has been around since the 19th Century and used to be called Peyrone's chloride. It is a platinum (ooh - heavy metal!) and works (here comes the science bit!) by forming a platinum complex inside of a cell which binds to DNA and cross-links DNA. When DNA is cross-linked in this way it causes cell death!! Death to the cancer cells!

I think I prefer the analogy I saw somewhere on the web, maybe a cancer forum or something, where someone described it as "Domestos for the bloodstream." It kills all known germs :-)

Sadly it also kills off some good cells too - especially ones that reproduce quickly and frequently - like in the mouth and throat and hair. It doesn't cause too much hair loss really - just a bit of thinning. It kills off red and white blood cells too - but gradually over the next two weeks, In fact by week two I'll have very little immunity left so will have to stay in and avoid visitors and all their infections! But then the following week they start to recover and by the time I have my next cycle they are pretty much back to normal. Ready to be killed off again :-)

The most immediate side-effect (and one that I've been worrying about slightly) is the nausea and vomiting. They are going to give me anti-sickness medication from the off - and give me some to take home as it can last up to a week. Also the District Nurse will be on call so that if they don't work she has an injection that will! It seems they think of everything.

I love the NHS!

So I have some magazines, books, the iPad (thanks dad!!) some letters to write, and some extra-strong  mints (to settle the stomach),  all packed up ready for when I sit in my recliner all day and receive my life-saving drugs.

In other news - the PEG is okay so far. I am pretty good at flushing even though it is a very weird sensation. I have to admit that Nathan did the cleaning yesterday - and don't tell her but he was much more gentle than the District Nurse!

We got the samples to the lab on Saturday and it turns out the hatch they tell you to put them in is actually staffed so I KNOW that someone took them into the lab for processing. So, we should be good for All Systems Go tomorrow morning. I am looking forward to starting it - as I can see an end in sight.

Nathan is going to print me out a chart so I can cross each session off with a THICK BLACK LINE ;-)

Taking the Pee

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There was one slightly annoying thing about today's visit to the hospital. It turns out after using a funnel and huge container to provide a 24 hour sample of urine - the lab didn't process it because I had not realised that I had to put my name on the label as well as hand in the paperwork with it.

So I came home with two more containers to do it all again and get it in before Monday morning. Otherwise they cannot start the chemo. The have to check the kidneys work, as the chemo drugs are processed through them.

This has the knock-on effect that I have to have a blood test the same time as I hand it in and the path lab is closed over the weekend.

So, the plan is:  I go to the Cancer Centre tomorrow, get bloods taken, then take the blood and the container(s) to the path lab and post them into their hatch, for processing first thing on Monday. Dr Gahir got the nurse to write my details on the containers as she clearly believes I can't be trusted to do it myself - heehee!

Oh and another slightly annoying things about today was that I went back to Reception to ask when I could come in on Saturday to get the blood taken, they completely misunderstood and whisked me off there and then to have it done. I said to the chap doing it - "Does it matter that it is a day earlier than Dr Gahir said?" and he just carried on. It wasn't until he looked at the date on the form that it dawned on him. he rushed out to consult with colleagues and came back and said that I had to have them done again on Saturday. I said I knew that - I was just asking what time! Between 9am and 1pm.

It would have been nice if he'd apologised. Vampire!!

Better News from the Hospital :-)

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I just thought - I haven't shown you the scar recently. I think it is fading pretty well. The neck and shoulder feel a lot better too - or maybe this PEG malarky has just taken my mind off them :-)

Fading scar

I've had a couple more hospital appointments since I came out on Wednesday. Yesterday I went for the final mask fitting and a go on the super-duper Radiotherapy Simulator Machine. It lines all the lasers up against the marks on the mask so the technicians can fine-tune things ready for the real thing on Monday. It was pretty exciting - maybe they should get one at Alton Towers!

The mask wasn't quite as tight as I'd remembered and the bed was quite comfy and they gave me a blanket - I was quite relaxed. Took about ten minutes, which is how long the daily sessions will be from Monday onwards.

Then today I went to see Dr Gahir to make sure everything was okay to start the chemotherapy on the same day. She told me that she had been discussing me with colleagues, because I am such an unusual case in that you don't usually get adenocarcinoma in the head and neck area. So all the research is about a different kind of cancer cell, so there are some different opinions the best way to treat me.

She had asked three experts and two out of three had said they only need to radiate one side of my neck. The plan had been to do both sides AND the back of the throat too. So now it will just be the right side, so will not be as bad as they had originally said. I was delighted by this news! Maybe I will come out of this with some taste buds and salivary glands intact.

She warned me that it will still be very sore - as they are using the highest dosage allowed - but only half as sore as it could have been!! I'll try to remember that once it kicks in!

The chemotherapy is still going ahead though - to make sure and give me the best chance of getting back to normal. I liked the sound of getting back to normal :-)

So I am pretty happy right now. Even a visit from the District Nurse to twiddle my tube hasn't got me down! It is pretty easy to clean and turn - it's just a bit painful when you have to push it in and out a bit. It is still pretty tender from the op so I guess that will settle in a few days. I am now flushing it like a pro though :-)

So, we now await Monday when it is all systems go!

Call the Nurse

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Sorry to those of you who found the last post a bit too graphic! Although I was very impressed with Heidi who actually watched the video too :-) However, it does help me to write all this down - stops it going round and round in my head. I can write it down - and then it is over and dealt with. So you are helping me really :-) It's lovely to have your comments and messages.


So, after the procedure I was taken back to the ward and kept there overnight so that they could see that it had settled okay. The most unpleasant thing was that because they had filled my stomach with air I was extremely bloated and it was a bit painful. However, the nurse on duty during the night noticed I wasn't sleeping and told me he'd make me some peppermint oil in hot water "It's an old-fashioned remedy but it works." he said.

It did taste delicious and was very soothing and helped a lot. Still can't sleep in hospitals though. Still the day starts bright and early at 6am when they do the obs - the usual blood pressure and temperature, then bring you breakfast.

I was told I'd be discharged as soon as the PEG nurse had been to show me how to look after my new pipework. However as the day went it on it became clear that she was very busy and despite promising to come "in ten minutes" at 11.30am there was still no sign after lunch. It is understandable, so I wasn't too annoyed.

I had a wander round the wardS and found my PEG buddy in the male ward. He was all alone, fed-up and bored so I went in for a chat and we compared tubes. I said that seeing as we had both had to be taught how to deal with them - if she came to me first I would say that we didn't mind doing it together to save time - so we both could go home! He said he'd do the same. later one of the ward sisters came to me and said "I've heard about your little plan - it's a good plan. We can find you a room so you can be shown together."

When she did come around 4pm we went into his ward as there was no-one else there. She had a big white bag full of dressings and syringes for us to take home with us. Then she said she was going to use me as a guinea pig for a demo on flushing. I was actually shaking when she took the dressing off and undid the end of the tube, attached a huge purple syringe full of water, undid the clamp and pushed the plunger. It was a very strange sensation, I could feel the water coming up my gullet. It was done in two minutes and wasn't too bad. She did the same on my buddy then gave us written instructions, phone numbers to ring day and night and sent us on our way. She was going to arrange for a District Nurse to come to my house on Friday to change the dressing and show me how to clean the area and rotate the tube. It's like having your ears pierced - you have to keep moving the tube around so it doesn't get stuck.

I thought I get a photo once the dressings were off - so it comes out of the front and you keep it taped to you so it doesn't dangle. The syringe attaches to the blue and white bit round the side :-)

My awesome PEG :-)

The bad news is that when they take it out they have to do the same procedure - but in reverse! But I have decided that I am going to look forward to that day because it will mean that:

1: My treatment is over

2: My throat is better

3: I can get back to normal!

BRING IT ON!!!!!!!!!!!!!!!

Alien Probe - Completed!

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Hello again!

Sorry for the blog silence over the last few days. I suppose eventually during this  adventure I was bound to come up against something I couldn't cope with. I have had a pretty easy ride so far. Some bits have even been enjoyable - the CT scan and choosing lunch from the hospital menu - but then I encountered the PEG.
My nemesis!
You already know that I have been dreading it and usually these things turn out to be not as bad as you'd feared.
Not always though!

So I turned up to Ward 107 yesterday at 8am with my little overnight bag and a sense of dread in the pit of my (empty) stomach. They didn't have a bed for me so sent me to the Day Room until they'd had the 8.30am Bed Allocation Meeting. In there I met a chap who was also in for the PEG insertion. I remember that I'd seen him before in the Radiotherapy Suite - he had a CT Scan with his mask just before I did. Another member of the exclusive CUP Club!

We exchanged stories and experiences so far - both very similar. He said that he'd said to his wife the day before "I want this day to go on forever" as he was dreading this morning as much as me. He said also that he was totally determined not to use this thing even though we had to have them put in. I agreed - although I guess one day we might just be glad of them. That's why I hadn't actually refused to have it done - though it was a close-run thing!

He hit the nail on the head when he said the worst thing was that we were going to be awake for the whole procedure. He'd had to stop reading the information leaflet before the end whereas I had read even more on the Internet and watched a video:

http://www.youtube.com/watch?v=5Hz-3rj5G0Y

I like to know what I'm letting myself in for :-) Nathan said I'm crazy!

A nurse came down and told us that we were being transferred to Ward 105 - which is usually for day cases. It smelt of toast, making me feel hungry despite my nervousness.

So I was taken off to the women's bay as we wished each other luck. I was admitted, with the usual observations - blood pressure, blood sample, temperature and oxygen levels. I received another laser bracelet for my collection and put on the gowns (one forwards, one backwards) and got into bed.

Around 10.30am they came for me! The cheerful men in blue who wheel trolleys with trembling patients to theatre and comatose ones back again. However this time I wasn't going to theatre - I was off to the brand spanking new Endoscopy Suite. They have been moved in there exactly one week. Everywhere is so brilliant white - with the odd pastel coloured wall. I was put in Pod 9. This is like an individual bay. You can tell you're in the new part of the hospital if you're in a Pod :-)

I couldn't see anything except the dazzling bright corridor. I could hear what was going on in Pod 8 though - so tried to concentrate on that instead of what was going to happen next.

There was a sweet-sounding old lady who was in for a colonoscopy. She was worried as she was having frequent bouts of diarrhoea. I bet she'd seen one of those ads on TV right now "blood in your poo or loose poo?" I don't know why but they always make me laugh - something about a grown-up serious man saying "poo" just seems so ridiculous - heehee. Anyway - good on them if they get people to come and get checked out. So she went off to a treatment room, then a few minutes later she was back in the pod. The doctor came back to her, told her she'd done really well and that there was nothing bad in there. She just had diverticulitis which can be treated with antibiotics. She sounded very happy when she left :-) Nice when someone gets some good news.

I was about to get some bad though - as a no-nonsense nurse came in and asked if I knew much about my imminent PEG insertion. I was tempted to say that I'd be abducted by aliens and and have a probe inserted that would stay with me  for always. But I  just said "not exactly" . She then went into some detail:

 I would go into the procedure room, they would pump me full of antibiotics, give me some sedative to make me relax a little (boy I'd need that!) and have some spray squirted on my throat to help me swallow the endoscope. This would go into my stomach,  have a mosey around my small intestine just for a look around, then fill my stomach full of air. Then - this is the dramatic bit - they dim the lights! This is so that they can stare at my stomach until they can see the light from the endoscope inside shining through. That's where they dive in with the scalpel and make a hole. They attach a wire (like a cheesewire she helpfully said - which did not fill me with confidence that I'd get out of this alive) the pincers on the endoscope (yes - it's a multi-tool!) will grab the wire and pull it up back through my mouth. They then attach the feeding tube to the wire with some kind of flange on the end to stop it coming out once in place - and then pull on the other end to get it back down my throat and out of the hole they made. Then they pull it out until the flange stops it. Once this is in place they take the endoscope out again.

Simples!

"See you in there" she said cheerfully as she left.

I lay there taking this all in while another nurse took my blood pressure. "Oh my goodness" she exclaimed "She must have put the fear of God into you - look at that reading it's sky-high."

Pretty soon I was being wheeled along the blinding corridors to Procedure Room 6. They were just about to take me in when everyone came running out of the room saying the ceiling was falling in! Thet were calling the builders, security and even a Fire Marshall turned up. "We'll just park you here while we sort this out" they said as all these men in flourescent jackets rushed in. It seems that one of the big machines on a track on the ceiling - something with lights on and tubes full of bubbling liquids - when moved it actually brought down half the celing tiles!

"We've only been here a week" the head nurse berated the builders "This is your fault!"

They had a look, scratched their heads and then said they could fix it when the room was free. "Well let us do this patient first" pointing at me quaking on my trolley "Then it'll be free. Give us 40 minutes"

As you can guess - this didn't do a lot for my state of mind - although writing about it now is mildly amusing :-)

So I was wheeled in, a canula was put into my arm, antibiotics were put in. They tried to put a mouth guard into my mouth - but it wouldn't fit in! They had to go off and find a child's one before they could start. At last, when everything was ready my throat was sprayed "Bitter taste!" the nurse said and they put the endoscope through the guard and down my throat. There is still some gagging and retching but I was surprised that once they got going it did seem to be over quite quickly. I could feel them pressing on my tummy but the local anaesthetic they put in there meant I didn't feel the cut. It was quite cool when they dimmed the lights though :-)

So I survived and was wheeled back to my pod where I promptly fell asleep for an hour. The sedative had kicked in by then. Hopefully the ceiling got mended.

Next ordeal....Alien!

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The visit to the hospital went well on Tuesday - I was only in there a few minutes. Just a matter of popping into the ENT clinic in Central Outpatients, locating Wendy and then doing a quick swab. She introduced me to June, who is new to head and neck cancers, but will be working with her for three days a week. She seemed very nice too. As I was leaving Wendy gave me a leaflet about having a PEG put in.

This is meant to be happening on Tuesday next week (13th)

I thought they were called Pegs because they were like a peg on the outside of your stomach. But it actually is an acronym for Percutaneous endoscopic gastrostomy. I have to confess that I'm really, really not looking forward to this. There is such a thing as too much information - and reading the leaflet they gave me I am not sure I want to do it at all! There are so many things that can go wrong including the risk of death which they say is 2 in 100. Now I don't think that those are very reassuring odds.

The whole thing sounds horrendous as you have to be awake - though partially sedated - for the whole thing. I just don't like the thought of having it in there for weeks on end - and having to mess with it. One of the things that can happen is that it can just burst out.

 I'll be feeling like John Hurt in Alien - expecting it to happen suddenly at the dinner table. :-)

One thing they didn't tell you in the leaflet is how on earth they get it out again. If you want all the gruesome details have a look here:
http://en.wikipedia.org/wiki/Percutaneous_endoscopic_gastrostomy
If anyone out there has had one of these things - please let me know how it was. Unless it was terrible - in which case don't! :-)

Enough of this doom and gloom. I am very happy today because I went back to my library. Just for a visit - unfortunately - not to work. Although I did serve one customer while Tracy was busy! It was lovely to be back there and chat to a few of the regulars. Everyone was wishing me well and I came out with yet another card and some Belgian Chocolates. I am under instruction to eat them before the radio-therapy, while I can still taste them!

Also, I was very happy to bump into Nigel who has left me messages on here about his experiences with CUP. I was just in the Parade in Silverdale and he came up to me and asked if I was Berni. I was so surprised just to meet him like that. He showed me his neck after radiotherapy - it did look a bit sunburnt. He looked pretty good though so it gives me hope. He is still having problems with his shoulder, so will get some physio.soon. It was good to hear that his taste was slowly returning! He said the sweet is very slow to come back so that throws out the balance of everything else.

So I look forward to when my radiotherapy is in the past and I can concentrate on getting back to normal. Won't be long now...

Hospital-Free Week?

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No! Well, I was looking forward to a hospital-free week this week, I had no appointments in the calendar at all. A nice normal week to try to get my strength back ready for the next round of treatment.
However, the phone rang this morning with the news that they have decided when they are going to put my feeding tube in - it's going to be next Tuesday. As this involves a general anaesthetic and an overnight hospital stay then I have to be checked (once again!) for MRSA. So, I have to pop into Central Outpatients tomorrow to see Wendy, my special nurse, to get the swabs done.
I can't complain - it's great that they take so much care to keep the infection out. Very reassuring!

It has been a lovely week so far, as since Saturday I have been feeling a lot more like my normal self. I feel stronger and less tired. Yesterday I went over to Stone to see Nathan's parents. We even stayed for lunch - a very delicious cottage pie made with sweet potato and a huge carrot cake. I think I have definitely got my appetite back now! You know that I was in The Sentinel the other weekend? Well, Nathan's dad is in there most days! He is the most prolific letter-writer I have ever known :-)

Today I did something a bit weird - I ate a Christmas Pudding!

Yes - I know it's March but I have been thinking about all this radio-therapy and how it is going to damage my taste buds and how some of that may be permanent. What if it gets to Christmas and I can't taste much? So having a Fox's Christmas Pudding in the cupboard, left over from last year - I ate it all with Brandy Sauce! I relished every mouthful and it was yummy!

Adam Richman - Man v. Food

 I have been doing a bit of reading around the web too - and one woman still can't taste anything sweet five years after her treatment. She says cake tastes disgusting. Imagine if your Mississippi Mud Pie actually did taste of mud!

 It had been getting me down a bit - how can I imagine a life without cake? Then I thought - it's better than the alternative - cake without life! I need to change my tastes that's all. Having no sweet tooth will have massive advantages! I'll lose loads of weight and swan around in my size 8 jeans (if I can locate them in the back of the wardrobe)  all the time. Plus, I may be able to cultivate a lucrative sideline - entering "Who can eat the Hottest Curry?" contests.

I was inspired by watching Man vs. Food the other day on the Travel Channel. I could join Adam Richman, travelling the world (well - the USA) taking on food challenges like the hottest ever chicken wings and the fieriest burger sauce. It could be awesome!

Woo - Weekend!

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Happy Weekend :-)

I woke up feeling pretty good today. Lots of energy and not too much pain and stiffness. 

I had an appointment at the hospital at 12.30 so I had plenty of time for a long soak in yummy-smelling, pink bubbles before I went.

There actually wasn't a queue at the car park - but it still turned out to be full and we couldn't see anyone coming out. So, I went into Reception while Nathan parked up further away, again.

Napkin Holder

Reception was deserted so I skipped up the stairs to Ward 202. There was a nurse behind the desk "Pretending to be a receptionist" she said. She took us in Dr Gahir's office and introduced herself as Sarah, a chemotherapy nurse. She had got me in to explain what happens when you have chemo, and explained the side-effects and things to look out for afterwards. She also gave me my free digital thermometer!

Free thermometer!

Around 7-14 days after chemo is when your white blood cells are at their lowest - so you are vulnerable to infection. If you do get one then you need to have antibiotics in order to be able to fight it off. So, the thermometer is to take your temperature every day - as anything over 38 degrees could indicate an infection. They have a special text service where Florence (or Flo as they call her) will text you each day to remind you - and will keep texting until you send in your reading for that day.

How great is that? They certainly try to do everything to look after you.

She gave me a folder full of information and a list of the drugs they send home with you when you've had your chemo. These are mainly anti-sickness drugs and injections (if you feel really sick you can call a nurse to come and administer that) She did put my mind at rest about what would happen and how long it would take. I was worried about the sickness thing - I hate being or feeling sick. (Give me pain anyday!) But they go to great lengths to stop that - as it is easier to prevent it in the first place than treat it once it starts.

Look at those posh stacked chips!

Then she asked us if we would like to see the Chemotherapy Suite. There was no-one there so we went to have a look around. I will be in Pod 1 - the pink one :-) You get to sit in a recliner, there's a machine for hot drinks and they even give you a meal during the day. You can have someone with you - or they can come and go throughout the day. There's even a little garden you can go and sit in if it is nice weather.

So I came out much happier and not dreading it quite so much!

I felt so good that I suggested that we go out for lunch. We went to the Noah's Ark, as I like the two white lions outside the door. I'd also heard that the food was great. 
 I had a very nice chicken and ham pie and Nathan chose the Linguine with meatballs. It was delicous - but neither of us had room for a sweet! It felt great to be doing something normal again.

You'll never guess what I watched this afternoon. My dad texted me to say that Son of Mask was on Film 4. So - there was a sequal - except it had nothing much to do with the original - apart from the mask! Here's what IMDb says:

"Tim Avery, an aspiring cartoonist, finds himself in a predicament when his dog stumbles upon the mask of Loki. Then after conceiving an infant son "born of the mask", he discovers just how looney child raising can be."

It was quite amusing :-)

The Mask II

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Actually, Jim Carrey turned down The Mask II - so it was never made. I'm made of sterner stuff though as I returned to the hospital to be fitted once again for this bizarre headgear. I won't mention parking again - as it makes everyone mad. Needless to say I went into Reception on my own :-)
Nathan did manage to join me before they called me in though. I had, once again, to lay on the table and they positioned me under a green laser - to make sure I was in the right position. There was a student there as Pat was explaining how they do it and they both  prodded and poked and shifted bits of me left and right until I was under the green crosshair.

Then they produced The Mask and put it on to see how it fitted now that it was completed hardenened.It was really tight - I was quite shocked how it squashed my face and held me rigid - I couldn't open my eyes or mouth at all. They felt that the forehead area was a little too tight so they softened it by warming it with a hairdryer and put it back on, smoothing it down against my skin.

Once they were satisfied they sent us back into Waiting Room B until they were ready to do the CT Scan.

I saw one of the technicians take my face into the room before I went in!

I was called in - this time Nathan couldn't follow as there are huge DANGER X-RAYS signs and red lights outside the door. It was pretty much like the first time. I lay on the bed, the technician put a canula into my arm so that he could connect up the remote control injection device - as they can't stay in the room while it is doing its thing. He was nice enough to ask if I was left or right-handed - so he could put it on the opposite arm. Having watched Junior Doctors I don't think that he was sure that he's got the canula in correctly because he said he was going to "flush it through with some water" - I've seen them do that on TV when they don't think it has actually gone in a vein!

So he pushed some water in and asked if I could feel any burning or stinging. I told him I couldn't - so he seems happy that he'd got it right. Then they put The Mask on and fastened me firmly to the bed.  He left the room saying "We'll watch you through the window - if you need anything just raise your left hand and we'll come back."

It wasn't so much fun this time as my eyes were forced closed and I couldn't see the awesome machine moving and flashing its impressive lights around me. This time I just heard it whirring and gliding and stopping and starting as I moved into it. Then without warning (last time they told me via a speaker) I felt a warmth flushing through me and a metallic taste in my mouth. The Iodine was being injected. There was that weird sensation that I was wetting myself - but luckily I knew from last time that this was just an illusion :-) Even so I still found myself tensing my muscles and trying not to cross my legs to make sure!

At one point I thought I was going to sneeze but I managed to stop myself somehow. It probably would have split The Mask or something.

Anyway it was soon over and once I'd got my plaster on my arm and had drunk a cup of water I was released. They made me promise to drink lots of water during the day to flush the Iodine through. They have given me another appointment on 15th March to have a dummy run on the Simulation machine to make a final check that everything is right before I start the real thing.

It was after 11am when we got out but it was a beautiful day with the sun shining. It was lovely and warm when we got back in the car. Maybe Spring is here early.

Aren't people lovely? Today I had another card from one of my customer (Thanks Mrs Butler!) and yesterday I had one from Tracy's mum, thanks so much! Also I had a card and letter from Caroline the Leader of The Poets who meet in my library. She sent me a poem written by someone who was going through cancer treatment. It is just great and inspirational! I managed to find it on the web - have a look:

When It's All Over by Myra Schneider

Maybe I should compile a list of my own :-)
PS Do you like my wonderful new logo? It was designed for me by the talented Nathan - thank-you
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