Limbo

It’s been a strange week.

I’ve been fretting at my inability to make a decision on whether to spend a load of money on Sky Sport or BT Sport to keep me going over the coming months and had just about made up my mind not to bother, the footie would be on in the evenings rather than during the day when I’d need it. Then on the front page of Saturdays Daily Express was a competition on page 37 or something. Normally I’d have put it to one side for later, but this time I sent off the email straight away.

Sunday was Row’s birthday. I spilled the beans about the Cam punting experience that we had to postpone. But I didn’t tell her about the champagne – Pol Roger – nor that friends were coming round to enjoy it in the sunshine in our lovely back garden. (Thanks to Bev and Wayne, my personal shoppers for delivering it on Saturday, plus flowers). Before that the wonderful NHS sent round the District Nurse to check that my PEG was ok and that we were coping with it. I’d developed a sudden bulge of liquid under my chin, and I’d had a temperature (unbelievably, the nurse did not have a thermometer to check it), and a bit of a runny nose and tickly cough. She advised that I went to the GP on Monday.

Monday I walked to The Dunton Garden www.duntongarden.org and back again. This was a bit more tiring than I expected, and so I abandoned the plan to get the bus into Biggleswade to see the doctor, and got Sarah, the Garden Co-ordinator to give me a lift in. Oh, I’d also had very strong stomach pain which the doctor reckoned was fluid escaping from the stomach and getting to the subcutaneous layer. He took my temperature with one of those electronic jobbies – it was a bit elevated and so prescribed anti-biotics. I decided to buy a thermometer – just £13 from Lloyds  - and then went to Biggleswade library to wait for Row to pick me up after work.

Tuesday – Bill who I play golf with, came round in the afternoon. Just after he left – SKY RANG TO SAY I’d WON the TV and a year’s subscription to SKY SPORT. Just BRILLIANT!!!!!!!. Becca brought round the DVDs borrowed from Keren. Also brilliant.

Thursday – we went to Lister hospital to see the radiotherapy consultant team. A new person – Nikhil – saw us. I’d tried to find out what the appointment was for, but nobody was able to say, so I prepared a list of 12 questions anyway.

1)   Why radiotherapy seeing as they’d removed the tonsils and lymph nodes?
A. Because both the right tonsil and one of the lymph nodes had ruptured thus potentially allowing cancer cells to have escaped. Radiotherapy will get them.

2)   Why chemotherapy ?
A. Because it weakens the cancer cells (a more detailed explanation is available) and makes the radiotherapy more effective.

3)   Which type of radiotherapy – fractionation or IMRT?
That impressed him!
A. IMRT – Horrid side effects!

4)   Which chemotherapy drug?
A. Cysplatin – Horrid side effecs!

5)   What stage of cancer?
A. Stage 2 – No, I said, it must be either 3 of 4. We debated and agreed that it was stage 3. Keh. Ay. Keh. OK he said, trying to regain the upper hand. It’s T2 N2a. That’s interesting I said (translated as – I’ve no idea what that means but thanks for recognising that I would be interested in researching it).

6)   Is my carotid artery compromised? (What a cracking question that is).
A. No. (What a short answer that is).

7)   Results of biopsy.
A. They took out 57 lymph nodes. One had a 3.5cm lesion with broken skin (ECS) – so that’s the one that cancer escaped from. And there is evidence of PNI+ in the tubes containing small nerves. But none in any of the blood vessels.

8)   Which parts are to be irradiated?
A. Both sides of the neck plus the back of the throat.

9)   When is treatment?
A. A bit of confusion here. I think the process starts on Monday 2^nd September when the mask is to be fitted up. But there’s also the kidney test which we’ve asked to happen on the same day, thus saving a trip. Then there’s a CT scan which wasn’t mentioned, a tattoo (which I think happens on trial run day) and the trial run which I assume is w/c 9^th Sept. This would mean treatment starting on 16^th Sept.
And time of day?
For Chemotherapy we need to get to hospital on the Sunday afternoon for treatment to begin at midnight lasting until 6pm on the Monday when I can go home.
For Radiotherapy, won’t know until the dates are booked.

10) Do I need to worry about the following current health issues:
a) Anti-biotics – there was no need for these as the swelling was expected – well NO-ONE TOLD ME – can stop these after completing 5 of the 7 days.
b) PEG site state and stomach pain, plus now some diarrhoea – to be expected. It looks fine. If pain persists, call the surgery team.
c) Headaches, neck ache, skin ache, muscle ache – and twanging nerves – to be expected.
d) Shooting pain each time I take a first mouthful at meal times – should begin to go away
e) Swelling of neck, face, head, throat – to be expected as the lymph drainage system isn’t working yet. Massage would help, but currently too painful to contemplate this.

11) Purpose of 7^th Sept appointment?
A. NONE! Will be cancelled.

12) When is next appt.
A. 2^nd Sept at Mount Vernon.

Once again, we came away from the hospital in a bit of a daze. I decided not to process the information until overnight. This was a mistake, because on Friday there was no-one at the hospital to be able to ask questions about it and all of the potential dates and gaps in the schedule. So we’re left in limbo over the bank holiday weekend – and lots of people are asking what the next steps are.

Friday. Our dog Kai is not at all well. In lots of pain. Back legs, front leg and also head/mouth/face. Row took him to vets. He and I are now on painkillers. He looks worse than me. At least I can have a beer. Bill from work came round to share some Cusquena beer – made in Perú. Bill brought round some beer made in Potton. The new TV arrived in the morning.

Saturday. Our 28th wedding anniversary. On the spur of the moment we did lunch at La Pergola – see their website - http://lapergolacambridge.co.uk/ just what we both needed, the lasagne and tiramisu went down a treat.
Both Liverpool and AFC Liverpool win again!

Today. The rain has finally stopped. We’re going to The Dunton Garden for The Jenny Day picnic to celebrate Jenny Pates’ creation of and retirement from such a magnificent community organisation. Looking forward to the music too. Thanks, Charlie, Al, Jimbo and Fluff.

Here comes the sun!

Frank