Blog 14 - What happened?

Blog 14 -  What happened? - Day 0 – And treatment starts
At 8pm on Sunday 22^nd September I was told that I WOULD be finished by 5 or a bit later on Monday and that 6pm was a perfect pickup time.

Treatment started at 9.40pm on Sunday when a bag of saline solution was connected to the cannula and the pump was set to inject a bit into my vein every 47 seconds. The nurse said this was to ensure that the tube would definitely be unblocked when the main hydration process started.
The pump made a 3 second noise like a teletypewriter going across the page and back again. Or a dot matrix printer doing a row of dots and a carriage return. There were two other patients having injections. Their pumps both worked every 20 seconds. There were another two patients with no sound effects and there were four empty beds.
Imagine the potential cacophony!
No, you can’t imagine because at midnight precisely my pump automatically switched to injecting non-stop. The row of dots followed a quarter second after the carriage return. It was as though a mechanical cane toad had hopped into the ward.

At 2am the alarm on my pump went off to tell the nurse that the first saline bag was empty and she popped in a second one fairly promptly. By 3.48am I’d already been to the loo three times. This is when a nurse came round to give me some anti-sickness medication (which I knew might be happening) and some steroids (which I didn’t know about). I took the opportunity to get some paracetamol as I had a stress headache (exacerbated by the noise of the machine).

At 4am the second saline finished and was replaced with a bag of solution called mannitol. This is a diuretic. The guy in the bed next to me has started snoring and the guy in the bed opposite has just taken a dose of Gaviscon and is now burping the frog chorus. Jeepers, and now two have a go at clearing their throats of mucous. The sound of things to come.
I read for the next hour – another few chapters of Pete Carroll’s Stark Contrasts.

At 5.05am the alarm on the pump went off to tell us that the bag was practically empty – another 5 minutes to get rid of the last bit – another check that my name was still Francis James – and the clear liquid that is Cisplatin was attached to the cannula. The bag is enclosed in a yellow plastic bag with the dire warning “Keep at room temperature” in bold black letters. There is absolutely no different sensation as the liquid goes into the vein – just a metaphysical feeling of – ‘here it comes’ ‘this is the start of the cure’ ‘see it through, now’ – and some relief as the pump speed has been halved and you can almost count the 40 dots being printed in the 4-5 seconds before the carriage return.
Twenty minutes gone – 1/12^th of the way through and no sign of any nausea. Another hour, 1/3^rd done, 6.30 am and the only effects so far is a dry mouth. Blood pressure remains a bit high. At 8.40 am the pump alarm falsely indicated that the bag was empty, but it took until 9.30 for this to be true after much manual intervention and a couple of anti-nausea pills.
By 9.40 the first of the two saline bags was attached – these take four hours each, so I will be finished by 6 pm. Phone calls to Row and Aziz and Bill set things back to the way they were for transport.

A few more day patients have arrived including one who’s been an extra in the Harry Potter movies. You can just tell he’s a wizard. Went and had a chat with him, but sorry, no photos.

Radiation was due at 10.25, but can’t be confirmed until the hydration has started and must wait for an hour after this, so it’s now wait until the machine operators call back with a slot. I was told that it had to be within 2 hours of cisplatin finishing. But when 11:00 approached and still no word I asked for more info. Eventually a 1pm slot was allocated and I was then told that they had 4 hours after cisplatin.

The radiotherapy did start at 1 and lasted half an hour – first the music – I chose the first Paulo Nutini album. Then the mask then some x-rays to check it was lined up, then the radiotherapy  with the machine making faint whirrings as it moved around my neck. Then I fell asleep! All over by 1.30 – longer than expected – they say that they’ve been told to increase the amount given.

Back to the ward. The first drip was due to finish at 1.40 but went on til 2.10. while the second drip was running I found a bit of time to watch the Avatar DVD borrowed from Malcolm and Mandy. It looked superb on this HD, widescreen, laptop.

The tablets that I need to take home arrived at 5.30. The drip finished at 6.15 and had to be followed by a quick rinse to ensure there was no potassium resin in the veins otherwise they may turn black. And at 6.30 I was running for the door and the carpark where Aziz soon arrived to take me home.

Thanks to all the people who helped me through this first day – including the nurses, trolley dollies and meal makers.

Blog 13 – Anger – And relax

Blog 13 – Anger – And relax

I got angry on Thursday – don’t worry it was controlled – but it didn’t do my head, my heart or my body any good. 

Anger is just plain bad. 

It was my fault. I’d built up my expectations of the day way higher than they should have been, expecting all of my questions, both known and unknown, about the treatment starting Sunday afternoon through to Monday evening to be answered. After all Mount Vernon MUST know what they are going to do to me, so surely they would tell me.

And relax. I phoned the hospital on Friday, straight to Ward 10 where I’ll be treated. I explained what I wanted to know and why I wished to know it. Helpfully the person relayed the message to someone who knew and they rang back half an hour later with the answers. Superb. Happy now.

But wait. I’m on the ward now – and they DON’T really know. 

I’ll tell you what – I’ll let you know after it has happened – then it will be correct.

Back to Thursday: So, I’d been told that a blood test would be done on Sunday evening, then I got a call on Wednesday to say that a blood test would be done on Thursday – which it was at 1pm, then at 2.15 I was told I’d have another blood test done at 4.15 – when we were due to be on our way to Liverpool. So at 4.15 I refused. 

Back to Sunday: And so, I had a blood test today (Sunday evening).
Next I was told that I’d be able to come home at 6pm on Monday – and arranged my transport – then I was told it would be between 7 and 7.30, now I’m told it could be anytime after 7 – so, I decided to stay in hospital on Monday night as I’d have to come back to hospital for 10.10 on Tuesday morning. And I told Aziz and Bill of the new arrangements.

I’ll tell you what – I’ll let you know after it has happened – then it will be correct.

And relax I said!

Science is - what you make of it

Blog 12 – Science is - what you make of it

More x-rays on Thursday last week for the dry run – which involved using x-rays to line things up rather than gamma rays to deliver treatment. You know, having just written that, I’m driven to find out what’s the difference. So here’s the science bit.

The distinction between X-rays and gamma rays has changed in recent decades. Older literature distinguished between X- and gamma radiation on the basis of wavelength, with radiation shorter than some arbitrary wavelength, such as 10−11 m, defined as gamma rays. However, they are now usually distinguished by their origin: X-rays are emitted by electrons outside the nucleus, while gamma rays are emitted by the nucleus. (Try this for more but simplistic  explanation http://www.bbc.co.uk/schools/gcsebitesize/science/add_gateway_pre_2011/radiation/treatmentrev1.shtml)

Radiation treatment can be systemic – you swallow the radioactive material or inject it into the blood; Internal (aka Brachytherapy) – you wear it – either a pill injected next to the affected area or the material is taped to the skin; or external – you have it thrown into you by big spanky, shiny machines.

Mine will be external – so photon beams. A photon is the basic unit of electromagnetic radiation. It can be thought of as a bundle of energy. The amount of energy in a photon can vary. For example, the photons in gamma rays have the highest energy, followed by the photons in x-rays and way down the list is light.

There are many different way of delivering the photons. Mine will be IMRT (Intensity-modulated radiation therapy) – IMRT uses hundreds of tiny radiation beam-shaping devices, called collimators, to deliver a single dose of radiation. The collimators can be stationary or can move during treatment, and can allow the intensity of the radiation beams to change. This modulation allows different areas of a tumour or nearby tissues to receive different doses of radiation.

Like chemotherapy (explained in the previous blog), radiation works by breaking a piece of the DNA molecule inside the cells that it hits. This break keeps the cell from growing, dividing, and spreading. Unlike chemotherapy which attacks rapidly dividing cells, radiation is indiscriminate –so both cancer and non-cancer cells are killed, and you have to wait for normal cells recover and work the way they are supposed to. The dying off continues for two weeks after radiotherapy commences, the recovery takes a long time to complete – for some things, a few weeks, for a lot of things, three months, and for some other things it could be a few years or it could be never.

How bad can it get?

In these quiet days between having my mask fitted and starting treatment, there’s been a lot of time to think about the coming weeks. I’ve said that I’d let you know what I might go through. I’ve read some horrible stuff from previous cancer survivors – and I’ve read about some people who’ve just breezed through it all. So I’ve tried to put myself in everyone’s shoes. I can’t say I’m happy, but I can say – bring it on!

So where to start?

The head? What will I think? The heart? What will I feel? Or the body? How will it react?

I’ll start with the easiest. The body.

Part 1 of the treatment consists of two sessions of Chemotherapy. My brother-in-law, Kevan, came to visit last week and told me how interesting the chemo chemical was – I hadn’t given it any thought – he said he didn’t really know how it worked – so I thought I’d find out. My drug is Cisplatin.

Cisplatin is a simple, tiny, molecule. A square shape with two chloride ions at the top and two ammonia molecules at the bottom with the all-important platinum ion in the centre. I quote from a Royal Society for Chemistry lecture – “Platinum, like many heavy metals, is rather rare in the biosphere and as a result humans have not evolved to use it in our biochemistry, nor have we evolved any particular defence mechanisms against it. As a result, dosing yourself up on soluble forms of platinum results in some rather nasty toxic effects such as nausea and kidney damage (as the body tries to get rid of the stuff out of one end or the other), nerve damage and hearing loss.” In addition, there can be dizziness. For some, the nausea can be violent and can last for weeks. For others, the nerve damage can result in months of hiccups or cold feet or loss of taste or smell. The tongue can become very sensitive so much that it feels like it is burning, or it can become very insensitive so much that you can’t feel hot or cold food. Kidney damage isn’t obvious but it can also be accompanied by constipation – which is odd, you’d expect diarrhoea. For me, the greatest, probably my only fear is deafness – not being able to hear birds, music, traffic, whispers, sobs, laughter, streams, thunder, conversation, “You’ll never walk alone”, BigglesFM. “The point, of course, is that cisplatin also fights cancer, and while partial deafness and nausea are not nice, they don't kill you like cancer does. Moreover, medical research has some excellent ways of minimising side effects and maximising the effectiveness of small doses of the drug.” “So why is cisplatin so good at fighting cancer? When cisplatin gets into the body, its neutral overall charge means that it can cross the cell membrane. Once in a cell it becomes activated by the replacement of one of the chlorides by a water molecule. The chloride falls off because the concentration of chloride within a cell is much less than it is in the bloodstream. The water itself is, in turn, easily displaced by the basic nitrogen atoms on DNA, specifically on a guanine nucleobase. Once bound to DNA the second chloride ion is replaced by a guanine nitrogen atom from an adjacent DNA strand. 

The result is a platinum fragment cross-linking two DNA strands within the double helix. This cross-linking prevents the cell dividing by mitosis and so the tumour stops growing. The damaged DNA can be repaired in healthy cells by DNA repair enzymes, but in tumour cells the 'kink' induced by the platinum cross-link is not recognised and the DNA cannot be fixed. As a result the cell undergoes programmed cell suicide - apoptosis - and the tumour shrinks.” The stunning thing is that the size of the cisplatin molecule is exactly the size of the gap between the two helix strands of DNA.

There’s more at http://www.rsc.org/chemistryworld/podcast/CIIEcompounds/transcripts/cisplatin.asp

Part 2 consists of thirty sessions of Radiotherapy. For details and an understated view of side-effects see - http://www.canceractive.com/cancer-active-page-link.aspx?n=261

Nausea again.

Pain – from none (I don’t believe that) to almost unbearable leading to taking Fentanyl which is the only thing to control it. I’ve read that Fentanyl is only used on cancer patients. It kills children and animals. It is also highly addictive. The pain will mainly be inside the mouth, especially around the tonsil site, but also the neck – I’m apprehensive as my neck is still sore from the lymph node operation and the throat is still sore from the tonsil operation.
The tongue and gums can become ulcerated. Mean ulcers.
Oral thrush is common: Symptoms:  sore, white patches (plaques) in the mouth that can be wiped off. a painful, burning sensation on the tongue. an unpleasant taste in the mouth that can be bitter or salty. redness and soreness on the inside of the mouth and throat. cracks at the corners of the mouth (angular cheilitis). difficulty swallowing

Saliva as thick as wallpaper paste and as smelly as socks worn by sheep. Or NO saliva at all. Which is worse.

Tiredness. Can’t be bothered to open your eyes tiredness.

Skin reactions: From redness, to black or blueness, from mild irritation to blistering or suppuration. Sometimes severe enough to have to suspend the treatment.
Hair loss – bizarrely both from where radiation enters the body – the front of the neck – and from where it leaves the body – the back of the head. I’m told that I’ll not need to shave my neck, sideboards or cheeks ever again – just my moustache and chin.
Anaemia – the treatment upsets the number of red or white cells or the platelets in the blood (by stopping the bone-marrow from creating them – because, like cancer, they grow faster than anything else in the body except hair. At worst, blood transfusion(s) are needed. At best, Guiness is good for you.
Stiff joints and muscles.

Oh, and one more. Radiotherapy can cause cancer. But hardly ever. And not in me.

 The head. Well, in the first weeks I knew I had cancer (but not which type) I did my bucket list. Nothing grand. But that was a waste of time as I now know that I will survive this. So if I know I will survive this – and my medical team have confirmed this – then I will survive all of the symptoms above. My head says it’s only 6 weeks of treatment followed by two weeks of worsening symptoms – just like summer school holidays – it’ll pass quickly and when I look back it will be sunshine with a few grazed limbs.

The heart. Hmm. The heart says THANKS. For all of your support and especially to Row. My heart tells my head – Numpty – of course it will be OK. My heart breaks for everyone who is going through this – and especially for those who are on-lookers and carers. I can and do cry and then I feel better – you can and do cry and nothing has changed. Please, please, please. Know that I feed from your care and your belief in me and my ability to get through this and my faith in the people who have chosen to specialise in this medical arena.

Love to you all
Frank

Up and Down

Started practicing pitching last week – the neck is still painful, but improving by the day. On the Tuesday I went to the putting green and got in a few more pitching practices, then on Wednesday I did 18 holes of pitch and putt. The week rounded off with a full 18-hole competition on Saturday. Many thanks to Bill for driving. I did an 8-mile bike ride on Sunday. This week I drove myself for the first time in ages and did another 18 holes with Alan. A LONG way to go before I’m properly fit.

So that was the up.

On Friday I got myself right worked up. I’d spent the previous day reading about other peoples’ experiences with the treatment I’m about to have – those horror stories, combined with not knowing exactly when treatment will start and finish, meant that I couldn’t file everything away in my mind.

And that was the down.

On Monday, 2^nd September – blimey, 2/3rds of the year gone – Row and I had an early start to get to Mount Vernon hospital for a few appointments, starting at 8:45. First up was the EDTA – actually it’s CR-51-EDTA which is ethylenediaminetetraacetic acid plus radioactive Chromium-51. This was injected in my right arm just before 9am. A few minutes later they ran a Geiger-counter over both arms to see that a) it really was in there and b) it was going round my body. Then at both 11am and 12noon, they took a blood sample from my left arm.

Whilst waiting, Row had a cooked breakfast. With no teeth, all I could manage was a coffee. We also visited the Macmillan centre and got some answers to the long list of questions I’d prepared.

At 12 we had lunch. Yes I managed a Moroccan lamb stew with turmeric rice. Then went to the Radiotherapy department where first I had my green mask fitted – you’ll have to go to Facebook if you want to see the photos – this involved having a load of x-rays taken and lines drawn on my face, neck and chest. The mask was put into hot water and clamped over my face onto the table I was lying on. It was then pressed and smoothed by hand so that it fitted snugly and then it was left to cool. Afterwards a small tattoo was etched on my chest so that everything can be lined up later. Finally, a cannula was put into my right arm for them to first take another blood sample, then by remote control, inject an iodine dye while the technicians were out of the room and the CT scan was being done.

Lastly, we saw the nurse assigned to my case where most of the remaining questions were answered. Those that she couldn’t were referred to Dr Moule who is overseeing my treatment and he was able to answer those. The nurse removed the cannula and we were free to go.

I also came away with a bag of very expensive mouthwash which is for the excruciating pain that I’ll have in my mouth and throat once treatment gets underway, and tubes of aqueous cream to sooth the agony of the burning of the neck.

Here’s a quick rundown of the next steps:

Thursday 19^th. Dummy run of the equipment involved in the radiotherapy. Followed by a two hour session to explain the possible effects of the chemotherapy.

Sunday 22^nd. Check-in to Mount Vernon Ward-10 in the late afternoon.

Monday 23^rd. It starts. The first Chemotherapy begins just after midnight and I get to come home round about 6pm. In between times is the first Radiotherapy session. THANKS to Aziz for agreeing to give me a lift home.

24^th – 27^th. Next 4 radiotherapy sessions. I plan to drive.

30^th. Radiotherapy plus first of the weekly review meetings with doctors, clinicians and therapists.

1^st-4^th October. Next 4 sessions. I plan to drive if I can.

7^th through to 18^th repeat of previous 5 days. From here on, I will start to suffer.

20^th October, check in to Mount Vernon again for the second chemotherapy session on 21^st and again, home at about 6pm.

21st-31st. Radiotherapy continues on weekdays.

Final radiotherapy is on Friday 1^st November.

Each of the next three Monday’s I have to go back to Mount Vernon so that the team can check on progress. After that, checkups can be done at Lister Hospital, Stevenage. Also, the pain stops getting worse now. But may not reduce for a while.

And on 19^th December I see Mr Mochoulis who is the ENT consultant. At some point in March there’ll be scans to see if it is all gone and healed properly. This will be the end of treatment and the start of the 5-year wait for the all-clear.

I still haven’t got the forthcoming trauma put into a cozy compartment of my mind. Thank you all for your support. It enables me to be more cheerful than I might otherwise be.

Frank