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

It's all out!

Hands up who’s happy! That’s me! They were my first words just a couple of hours after surgery last Friday. I can’t believe that I can put my hands up and wave them about in the air: I can’t believe that my putting is straight. I can’t believe that it’s better.

But my, what a week? And my, what a great NHS we have! Oh, it could be improved – Sister Suzy and Jean the Peg didn’t inspire confidence, but they did their job.

Friday 9^th: At hospital for 11, in theatre for 1pm asleep in minutes, under the knife for nearly 5 hours – teeth out, cyst gone, lymph nodes gone, muscle and jugular vein gone, nerves either gone or shocked into paralysis and to do all this, a cut from behind my ear to under my chin. In recovery for an hour. On the phone to Row in 15 minutes! Morphine every 5 minutes. My I was happy.

Saturday 10^th: I’m still happy, smiling, eating. A bit unsteady on the pins. But able to use my arm – which I’d not expected. Morphine all day. Great to see Row.

Sunday 11^th: Hmm, not so happy now that I’m on standard pain relief – oh, well. It’s for the best.

Monday: Strangely happy to know that the next operation is for this Wednesday.
Tuesday: Not a lot happened today. Except PING – there come another nerve back on-stream: Ouch – another: Oww – now stop it.

Wednesday: Breakfast at 5.45 (Weetabix). Operation at 1pm: Just sedation, but guess what – I fell asleep: Awake at 3pm – tube now in my stomach. Not much room in it for anything else as I haven’t ‘been’ since last Thursday.

Thursday: Instructions on how to look after the tube – I’ve decided to call it Me-Tube. No video available.

Friday: Why oh why did they need to do a test feed via the tube last night: Starting at 8pm (I’d already had my tea) and running through until 6am. Up every two hours for a pee as there was no room for anything else.

Still Friday: Looking forward to going home soon. But wait! The loo beckoned at 7am and the agony kicked in at 8.30 but no success despite a number of ‘procedures’ until 11.30 by which time Chris was on his way to pick me up. He got me home via Baldock Services at 1pm. I thought I’d made a BIG mistake – but at 3pm some relief – then some sleep – then Row came home from work. Got up at 7pm and we went out into the garden where tears of happiness flowed to be home.

Chicken is a wonder food and Row had made a wonder chicken casserole – which together with a beer made for a brilliant homecoming.

Saturday: What a brilliantly comfortable day. A shower. A shave. A shiver or two. And Liverpool won.

Next: A visit to hospital for progress check with the guy in charge of the Radiotherapy  on Thursday 22nd

Frank

The gore

First of all – THANKS! – I asked for some help and got loads of offers – you guys make life so much more bearable.

Things moved rapidly again this week – and it’s only Tuesday. I spent ages on the phone to the hospitals yesterday to find out what the schedule was for the next few weeks – here goes:

6^th August – I thought I was just going for a dental assessment, but in addition I met with the surgeon doing the operation. Teeth first – so now’s the time to ‘fess up that I’ve had dentures for several years, and just this year had a new set made up as I had two more teeth removed. So it was no real surprise to hear that all of my remaining teeth will need to come out. What was a surprise was that the two wisdom teeth have to go too – and one of them has a cyst on the root – and that is affecting a nerve – which when removed will cause a loss of sensation in my lower lip and part of my chin. And the next bit is very hard to swallow – I can’t have the dentures remodelled for 6 months at least ‘cos the mouth and jaw will continue to change shape throughout and after the radiotherapy and chemotherapy. Do you mind if I swear now? ‘struth!

7^th August – a trip to Luton for a pre-operation assessment – and we’ll make it a double header by nipping down to Mount Vernon cancer hospital to get a feel for the journey.

8^th August – I’m going to visit work – probably for the last time this year. Afterwards Row and I are joining some of my department for a ten-pin bowling session up in St. Neots.

9^th August – My last meal for a while at 7am then to Luton and Dunstable University Hospital at 11am. The surgeon will (hopefully after I’m anaesthetised) take out my teeth – and now the gore – he then cuts from behind my right ear down the side of my neck and round to the base of my chin – and perhaps a bit more down towards my throat – then the fun begins: First he removes the major muscle (sternocleidomastoid) connected to my right shoulder – this will prevent me putting away food onto the top shelf of the larder – it will also hamper my backswing, but should prevent the yips. Next he dredges the material between my skin and my arteries which is where the lymph nodes hang out. There are at least 30 nodes – but the surgeon says his current record is to find 86 of them. Apparently all 5 levels of nodes are to be removed. There’s more, that I didn’t know about before today – the cancer may have leached out of the lymph nodes into surrounding areas – in which case he’ll remove, I can hardly bear to write this – he’ll remove the jugular vein – luckily I’ve got another on the left side. And there is also a chance that he’ll remove either deliberately or by accident, the accessory nerve which is connected both to the muscle being removed and the trapezius muscle. There’s another nerve that might cop if – one that gives sensation to the ear lobe – so if anyone wants to buy me a 40ct diamond earring it won’t be money wasted.

10^th August – pain, pain, pain. Well probably morphine, morphine, morphine. The surgeon assures me it will be nothing like as bad as my tonsils out. Oh, he said, I forgot, you’re having a cyst and wisdom teeth out too – that hurts.

11^th August – Sunday – a day of rest – I’m really sorry to be missing the Silverado tournament at Crondon Park.

12^th August – I’m double-booked – I have an appointment for an operation at Lister Hospital called a PEG – which is a tube put through my belly into my stomach so that when things get worse, I’ll be able to feed through it. We’re trying to get this rebooked to happen preferably at the same time as the main op, but otherwise while I’m still in Hospital.

13^th-16^th – still in hospital – although hopefully I can come home on the Friday.

17^th – start of footie season – Come on you Reds!

18^th – Row’s birthday and hopefully we can have our punting trip on the Cam.

After that – well in another 3 weeks I should be fit to start the Radiotherapy journey – which will see some horrid side effects – of which I’ll write more later.

Chin up!

Frank

Good news

Following a second bout in hospital with throat problems, the up side was they brought forward The Results Show on 1^st August from 12.15 to 10.30

There is indeed good news. 

The primary location of the cancer was in the right-side tonsil which has now gone. It was bigger than they expected, extending outside of the tonsil into the surrounding muscle. The think they've got it all, but of course, can’t be certain. So to increase the chances of success there will be some further treatment of the throat over the coming months.

The lumps on my neck – yes lumps, now – are in the lymph nodes some of which are attached to a muscle. These are the secondary location of the cancer. It’s going to be surgery to take out as many lymph nodes as we can and the muscle. 

And then further treatment of the neck over the coming 5/6 months.

I haven’t got it clear in my mind yet what the schedule will look like, and more to the point, what Row and I need to go through to get this fixed 

– and it will be fixed. 

I think my plans for a race triathlon might have been scuppered for this year – but hey – I've already achieved my objective – 5 hours is the current record.

I’ll do another blog in a week or so – this will cover some of the physical changes to be expected as a result of the treatment. Then I’ll stop unless there is something funny to say.

Oh, and I’ll be sending a few individual begging emails, and will take no for answers.