Bugwatch

It seems as though the whole world is sneezing, sniffing, snivelling, right now; and I am neurotic to the point of paranoia about it.

I used to think: "I won't catch that' and was largely right. Now I know a single cold germ could land me in hospital.

If anyone coughs near me I feel violated. How DARE they?

Back on temperature watch after a scary 38 degree reading this morning. It's gone back down since but JP is on standby to take me to hospital if it spikes again.

Have been feeling under the weather the last couple of days. And there is lots of weather;  mostly a grey, oppressive drizzle.

Never mind, we had some glorious sunny days out on the boat last week. We even slept on it twice.

Lookalikes (everyone's a winner)

Ed the Red

Ronnie the Rocket

Has anyone noticed the striking resemblance between Red Ed, newly elected leader of the Labour party and snooker ace Ronnie (the Rocket) O'Sullivan?

Both were winners yesterday.

Could they by any chance be related?

Brothers perhaps?

Wedding bells (updated with pics)

It's a day for happy couples and a night for happy coupling! Emma and Rog tied the knot today. They have had a bright cold day for it up on the North Yorks coast. Emma doesn't mind the cold, being a Yorkshire lass. Nor does Roger, being from well North of the border - hence the tartan.

I beat Hello to first picture publishing rights.

Emma's Mum sent me the order of service to follow remotely, so Rob and I sang the hymns. (He sang Bread of Heaven in Welsh!)

Had my health and immune system permitted, I'd have been there, doing a reading:

"Love is patient and kind; love is not jealous or boastful; it is not arrogant or rude. Love does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrong, but rejoices in the right. Love bears all things, believes all things, hopes all things, endures all things......so faith, hope, love abide, but the greatest of these is love" 1 Corinthians 13.

Emma's brother stepped in for me.

It's not often you see the bride playing a euphonium!

Now they'll be on the champagne.

Have a great day, Cruton and Dodge! I'm with you in spirit xxx

Pics: Jim Lee

Five down

ONLY ONE LEFT!!!

FEC felt like an old friend after the nasty yew poison. It's perversely reassuring to see that pink wee once again (FEC contains three chemo drugs. One of them, epirubicin, is as its name suggests bright red and dyes urine the same colour).

Someone said to me the other day:  "You're being very brave. If I was you I'd be absolutely terrified." to which I replied: "You underestimate yourself, if it was you, you'd be brave too!"

Each time I go to chemo clinic or anywhere else connected with cancer I come across people braver than me, dealing with worse prognoses, repeat diagnoses or more ghastly treatment regimes; coping with courage and good humour.

The truth is, it's impossible to remain 'absolutely terrified' for six months solid. There have been moments of  fear, panic and helplessness, and plenty of tears, but there's also been a lot of laughter and times of tracendental wonder when I remember how FEC-ing great it is to be alive!

Finish line in sight

The good news is my bloods are up, liver functioning normally and chest x-ray fine - so fit for chemo on Thursday.

The bad news is I will miss Emma's wedding on Saturday. Sorry Cruton. I will be there in spirit (a gin and vermouth please) and I will pray for good weather.

In between hospital visits we've been enjoying the unexpected warm spell. We've now brought the boat the rest of the way back. Andrew came with us to crew, which was very welcome as I am mostly a figurehead first mate at the moment. Don't have the strength to do locks and ropes although every now and then John lets me steer!

This week's treatment is the penultimate one, the end of this protracted journey now coming into view. Thursday marks exactly six months since Diagnosis Day. Thanks for sticking with me through it!

Maiden voyage

We took advantage of yesterday's sunshine and brought the boat half way home. It's great! Apart from having lots more room, it's got a CB radio to warn the lock-keeper of your approach, and a depth meter which shows how much water is beneath you. It's even got a fish-finder should you want to catch your dinner.

Here is JP skippering. He's grown a beard for the occasion.

Tonight we are going to sleep on it. I love spending the night on boats. The motion of the water lulls you  to sleep and you wake in the morning to see swans gliding past the window. Serene.

And the Colonel was on his best behaviour. We gave him a meal and a bed for the night and he's now left us in peace.

How to get rid of life insurance salesmen

Tell them you've got cancer - they can't get off the phone fast enough! There's been a spate of them recently. Sometimes they make a cursory attempt at concern but mostly they just say 'thank you madam' and put the phone down. They just don't know what to say; it's not covered in the script.

Being at home in the daytime you notice how many cold-calls you get. On the day I came out of hospital someone rang up wanting me to do a survey. I said: "I don't want to do a survey. I've just come out of hospital and I'm feeling rather tired," thinking that would get rid of him, but I underestimated the tenacity of the commision-based tele-salesman.

"Madam, it's a very quick survey and will only take a few moments of your time."

Madam got a bit cross with him at that point.

I am feeling much better - can get up the hill again and today walked back from the hospital. Liver scan came up clear - good news. Also had a chest X-ray - another unexplained appointment - I'm told it's 'routine'.

JP is on leave next week so we might get some boating in. In the meantime we are bracing ourselves for a visit tomorrow by Colonel Sensitivity. Perhaps while he's here I should put him on phone duty?

What the fec?

Oncologist took a look at the list of side effects and put me back on FEC for the final two sessions. FEC is the regime used for the first three cycles which my body tolerated well.

So no more Yew tree poison for me! Result!

She also delayed the next chemo by a week to give me time to recover properly.

Bed rest

Still spending most afternoons horizontal, and invariably when I wake up there is a furball somewhere nearby! Oscar is sleeping in sympathy.

On Saturday I got a letter from the hospital telling me I have an appointment for an abdomen scan. This brought on a paroxysm of panic - what do they expect to find? Is there something they're not telling me?  Then I remembered they said the last chemo affected my liver function - so it's probably that. Ironic after years of probably drinking more than the average RDA of alcohol, if it takes one dose of chemo to mess with my liver! Thankfully livers are resilient and repair themselves quickly. 

Tomorrow I see the oncologist to discuss options for the next dose - originally planned for Wednesday but I think they will delay it by a week.

The scariest thing about the recent spell in hospital was that it brought me face-to-face with the end game of this disease. And although I remain optimistic that my prognosis after treatment is pretty good, it was still poignant and very sad to see such poorly people.

Holiday

Usually at this time of year I go on holiday. I like to go when everyone else comes back. It's cheaper, less busy and cooler.

The pic was taken last September in the Ukraine. It shows me on a rather large trike on Yalta beach. The trip was the latest in a series of Clare-and-Emma adventures. We've done Hong Kong, Morocco and Romania in recent years.

This year I can't go abroad, of course, as need to stay close to Nottingham City Hospital, so am enjoying other people's holidays vicariously instead. Joy's just got back from New Zealand, and Jules is off again today to Majorca.

The boat, however, provides the perfect staycation. Today we've been for a walk down to Beeston Marina to choose new moorings. Proves I must be feeling better.

While the cat's away..

On Saturday night while I was in Purgatory the house survived an invasion by 20 twenty-year-olds.

We handed over the house to John's daughter for her 20th birthday party - theme The 90s.  Funny - the 90s seems like yesterday to me but to them it's their childhood.

I was quite glad I was out of the way in hospital with other things to worry about. JP stayed at Gerard's and pitched up at 9am to find the girls already clearing up.

Seems a good time was had by all, no damage done, and the neighbours are still speaking to us. I keep finding bangles and pink hairspray everywhere!

Been horizontal most of the past couple of days but slowly recovering. Had a blood-test earlier and my bloods are on the up and up. It's reassuring to know that if I pick up a virus I can now fight it off myself.

Home again

Released into the custody of JP. These are my homecoming flowers. Thank you for all your messages of support.

The last 12 days has to be the most frightening episode of this cancer journey so far. I felt as though I'd been poisoned - like Litvinenko after the Polonium 2-10. And it went on and on and on until the eventual trip to hospital on Friday.

Saturday night on the cancer ward, I thought I'd died and gone to Purgatory. My drip machine was faulty, and every fifteen minutes or so would bleep, waking me and anyone else in the vicinity - like some kind of sleep deprivation torture. Added to that, the night was punctuated by groans, moans, sobs and the laboured rasping breathing of someone in the last stages of life. She died the next morning. Maureen RIP. 

Things got better from there on as I got to know some of the other patients. There were some very poorly people there; Maureen was not the only one to die over the weekend. But every single person I met was positive and resourceful. And the nurses, of course, were angels.

Opposite me was a 21-year-old girl with a rare cancer. Can't remember what she called it but there is only one other person in the UK with it. She was brave and bubbly. There was a young lad in one of the side rooms who just wanted to hear guitar playing - so they brought musicians in to play to him. 

My sore mouth struggled with the hospital food, so JP brought me runny porridge in the mornings, Rob came bearing jelly and Jules brought home made soup. As the effects of the poison and infection wore off  I started to feel better.They sent an excellent junior oncologist to see me - someone with people skills and empathy. We talked through my options. Nobody is going to force me to have another dose of Docetaxel if I don't want to. There are other drugs and reduced doses.  

Docetaxel, I've learnt, is derived from the Yew Tree. Should have listened to my mother when she said "Don't eat the berries - they're poisonous!"

Life at the Hotel Winifred

Doctor: 'I feel less worried about you now I've eye-balled you.'

Me: 'Why?'

Doctor: 'You're alert and talking! Your chart looked pretty grim. How are you anyway?'

Me: 'Better than yesterday but I'm still getting the shivers.'

Doctor: 'well you've got a nasty bug and you've got no immune system. If you weren't on anti-biotics you'd almost certainly die!'


That was yesterday. No sign of any doctors today but the shivers have gone and I feel almost normal!


And there is a guitarist on the ward and it's not John!


Winifred 2 is a derelict ward in the oldest part of the hospital. They put people here when the proper wards are being cleaned or decorated. It's kind of half ward half store cupboard. Some of the bays are full of hospital junk.


Never mind. It's doing its job. Blood count's on the up and temperature's getting cooler. Not sure when they will let me out but will keep you posted.

Change of Scene

Once more I am enjoying the hospitality of Nottingham City NHS Trust - Winifred 2 Ward.

After ringing the chemo clinic daily and being advised to 'sit tight' today someone said 'come in and have a blood test'.  So I did.

Turns out I've been battling an infection with a white blood count of zero.  No wonder I felt ill!

They are pumping me with I.V. antibiotics.  Dictating this to JP so he can update blog.

Temperature watch

Spoke too soon. Not out of the woods yet. Shivers and shakes returned, and for the past couple of days we've been monitoring my temperature every few hours. If it goes beyond 38 it means a trip to the hospital. So far although it has teetered tantalisingly close it has not quite reached that magic number.

I've been on the phone to the chemo clinic alot. The last nurse I spoke to said in view of the severity of my symptoms they might lower the dose next time. Good, because there have been times these past few days when I've wondered how the hell I can get through one more treatment let alone two. At this rate I will be limping across the finish line.

Oh the positive side, I've had some nice chats with people on cancer helplines. The house is full of jelly and we're having an Indian summer!