Many many thanks to everyone one who has been in contact – whether publicly or privately
– your cards and best wishes are gratefully received.

If you would like to contact me privately – then use the contact page – Click Here

otherwise

Scroll to the foot of this page to leave a comment
and which of course would be public.

Treatment complete.

Recuperation now
probably for a few months.

Scan results are in!!!!


Monday 26th November 2012

On 15th October 2012 I was given an MRI scan and on 30th October 2012 I was given a CT scan. Both of these scans were to determine how successful the Chemotherapy and Radiotherapy had been.

Well today I had my appointment with Dr Coyle at the Bexley Suite, St James Hospital, to be told the results of these scans.

I am pleased to report that it looks as though the treatment has been 100% successful and that the tumour on my tongue has been eradicated.

Of course there are other things still ongoing – there is the small matter of getting my teeth sorted out – at least another 10 weeks by the sound of it.

My taste will take a long time to return along with being able to generate enough saliva to comfortably chew and swallow food.

There are a few other smaller issues to sort out too, but the bottom line is – I am getting there.


Thursday 26th July 2012

Today was my appointment at Pinderfields hospital in Wakefield. It has been three weeks since my last one and I am pleased to say that I was given a glowing report – what the nurses didn’t realise but later I admitted to was a bit of a dodgy tummy. “Oh well let’s cut out the laxatives for the moment then”, fair enough but three days later and very little sleep, I still have the “runs”!

I hope it improves in the next couple of days, because I am due to meet up with my long suffering caddy who happens to be in this part of England on Tuesday, only time knows, but I will keep you updated.

Just a short blog this time – not a lot to report, talk soon ttfn………..

Elaine here!
Perhaps the above could have been due to the fact that Sandy had been trying some high calorie shakes instead of having to have his nose bag on but he also decided to go on and try some tomato soup as well, maybe, just maybe this could have been a touch of overkill, still what do I know, men always know best don’t they?


Saturday 21st July 2012

Well having said everything was going smoothly, I should have kept my mouth shut!!!

Elaine was unable to administer any medication because my dearly beloved tube was blocked – how I have no idea. We tried all sorts to flush it out but it was not going to budge. The solution of course was to go to hospital and have that one removed and another one put in its place. Oh No!!!!!!!

An hour later at 9:00am I was at Pinderfields Hospital where (to cut a slightly longer story short), nurse no 1 had a go and much pain later with the tube inserted by about 3 cm the decision to abort was made. (I should say here that the tube has to insert by about 60cm) πŸ˜₯

Enter nurse no 2 – Sister I think – she did well, she managed to insert same tube by about 6 cm, double the previous effort – well she’s not a Sister for nothing eh! Any way still much pain and still a failure.

Call in the Doctors – two in fact. After a quick discussion and at my suggestion to try the right nostril as my left one was now rather sore the new tube was in place with very little effort and almost zero pain – a result πŸ˜†

A not so quick check by x-ray that it was in the correct place and I was released and back home by midday.

A good result given that the last time there was a problem I was kept in for a few days – phew!!

Chat to you all soon, bye for now …………..

Elaine here again,

I couldn’t believe how someone could be fed by a tube all night and then as soon as I disconnect it in the morning it just totally bungs up!! It takes approximately two minutes between undoing the ‘nose bag’ and getting a syringe full of medicine attached to the tube, only Sandy could manage to be fed before blocking up.

P.S. Just to make sure he came home the same day when getting his new tube fitted I sent my mum with him, since she can’t drive at least he had an excuse for coming home!!! See, we have it all worked out now, how not to have him staying in hospital any more πŸ˜†


Friday 20th July 2012

On a slightly different but related subject, I would like to let you all know that my step-daughter Vicki, her husband Phil and their friends Colin and Jane are doing a charity walk in aid of Cancer Research UK.

It is their intention to complete the Lyke Wake Walk in 24 hours – no mean task – it’s 42 miles of rugged North Yorkshire moors.

Click here to see the route

and then

Click here to make a donation

go on, it doesn’t have to be much.


Sunday 1st – Sunday 15th July

I think the simplest thing here is to report that there have been no backward steps taken, everything is going the way it should, albeit a lot slower than I would like but……..

So

  • still got the nose tube in place
  • still taking gallons of medication
  • still sleeping a minimum of 12 hours per day
  • still losing my hair at the back
  • still got my feeding machine

(Click to enlarge images)

My Nose Tube My hair disappearing My feeding machine

But hey, I’m still chugging along, 😎


Sunday 3rd – Saturday 30th June

So the treatment has been completed, not that it’s effectiveness is known at this point – time will tell. This entry is covering quite a few days, in fact pretty much the whole of June, but June has been an interesting month as you are about to learn.

After the elation of finishing my treatment on the 2nd of June, four days later I found myself back in hospital having suffered a violent coughing fit, which of course brought the feeding tube I have had installed flying out. It is not the sort of thing that can be reinserted by d.i.y. – it has to be done professionally.

There was more involved than just a coughing fit though, tests revealed an infection in my chest, which had triggered the entire affair. The outcome was a weeks bed and board, with accompanying antibiotics and careful monitoring of my food intake as I had lost some weight too. I checked in to St James’ on the 6th and with new tube fully operational, was booked out on the 12th – feeling a hundred times better πŸ™‚

The following two weeks passed with little to speak of. The only contact with hospitals was a routine clinic on Thursday the 21st which went smoothly and my medical team being very happy with progress, as of course I was too. There are still some aches and pains from the radiotherapy, and a little bit of hair loss along the collar at the back (oh no 😯 ), but those aside……

So off home again to continue with the process of getting back to fitness. The next few days were all good and of course there was footy to watch, which helped pass the time.

The morning of Thursday 28th arrived; I was sweating heavily, feeling terrible and the coughing accompanied with nausea that hit me two weeks previously had returned. After a few hours of desperately trying not to cough too much I failed and my feeding tube was ejected once more. By now you should realise that that means – hospital.

Sure enough I was admitted to St James at 6:00pm and after x-raying and all sorts of other stuff finally got to sleep at 1:45am the following morning.

The tests showed up – guess what – a chest infection, which this time judging by the volume of the antibiotic, they were going to eradicate.

I wasn’t in for too long this time – on Saturday 30th I was sent home with another feeding tube (my 6th!!) and five days worth of antibiotics along with high calorie liquid food to build me up again – very tasty yum yum – yea that’ll be right πŸ™

So that’s it all up to date – onwards and upwards and all that stuff.

See you soon ………………..

Elaine here!

Well, as you can see we have been resident at St James for the best part of this month. He’s doing his best to turn my hair white. What he’s not saying is that the first tube he lost this month was at half five in the morning and his temperature was sky high which meant I had to get him back in pronto, not only for the tube to be replaced but also the temperature was saying that something else was afoot.

Having pulled the tube back out I left him on the bed to come to himself a bit while I got dressed, then I got him dressed, phoned the hospital to say we were on our way ( this was a bit like getting to the hospital during pregnancy but in reverse!). Having got Sandy into the car along with bowl, towels and tissues etc, we set off, arriving at the hospital at the back of seven in the morning.

We got up to the ward, (5th floor), into the assessment room where a nurse proceeded to try and replace his tube. Well that was never going to happen! he hadn’t had any painkillers since the previous evening and because his throat is so swollen the pain was unbearable but this nurse wouldn’t have it and had a couple of attempts, she probably would have tried again if it wasn’t for the fact that I collapsed and ended up in the adjacent bed to Sandy, with all the rushing about I hadn’t even had a cup of tea that morning.

So now when we go into the hospital all we get is “so your the woman who fainted”, notoriety follows. Obviously when we leave the hospital and the nurses say “See you later” as we go Sandy takes it literally and goes back to see them, I have got to get him to see it’s OK just to visit for the day when we go for a check up and that he doesn’t really need to spend the whole week there!!!


Saturday 2nd June

Final Day – No. 35

OK so my last day for treatment has arrived – nothing can go wrong now surely – can it?

My appointment letter and card clearly state that I have to attend at 5.24pm for Machine MLC LA11 – but at 11:40 the telephone rings. It is St James’ Hospital with a slightly irate young lady at the other end asking why I am not in attendance for my appointment. Well after a brief discussion that I would be there in 1/2 an hour I set off.

Needless to say I took my appointment letter, but that was not needed. By the time I arrived they had checked up a duly issued me with an apology. Why can’t it just end smoothly.

Well with all the nicities gone through the final RT session was wrapped up and that was it all over. Whoopee πŸ™‚

Well hopefully – still got to find out whether it has all worked – but lets be positive.

So what now – well the slow recuperation of getting taste back, being able to swallow my food without the aid of a tube, getting the weight back up, getting off the copious amounts of medicine I am receiving, building the old muscles up again, etc, etc.

I will keep you posted here as things progress, and hopefully that progression will be forwards 😎

Many thanks to all those involved in my treatment, I know there were mistakes made at times but hell were all human.

Many thanks for all who read this blog and also those who contacted me

See you all soon ……………..


Friday 1st June

Day 34

A fairly leisurely day and the off to St James’ for another nurse meeting. Once again she seems to be happy with the way things are going.

After a few other little checks and tests I am off to the Radiotherapy for the 34th time – all on time and then its off home once more.

Normally with this being a Friday the next session would be on Monday – the Jubilee Weekend puts paid to that though – on duty tomorrow at 5:24pm

Talk tomorrow ……………


Thursday 31st May

Day 33

Remember that day of Chemotherapy that had to be postponed – well this was the rearranged day.

So we were in for 8:30am and things were all underway within 1/2 an hour.

With the liquid still flowing into my veins it was off to RT for session no 33 – 4:00pm now by the way – all a bit tricky with tubes coming out of my mouth and arm and the drugs on a stand and me on a flat table in a spinning machine – I think you get the picture – but it was all completed and then back up to Chemotherapy to allow that process to complete.

With tubes and cannula removed, (sadly not the feeding one though!), the day was complete, and a very tired and dizzy Sandy was chauffeured home – followed by a long lie the next day.

Talk soon ……….


Wednesday 30th May

Day 32

It’s the Dietitian’s turn today – and lo and behold she too is pretty happy – so are things finally looking up – well time is the big question there, but it seems to pointing more the right way now.

And onto RT for session 32, time is going the right way with this part πŸ™‚

TBC ……………..


Tuesday 29th May

Day 31

Saw the Doctor today, she seemed to be happy too, but, as I said a bit further back, these are still early days – fingers crossed.

Apparently the tube feed could be in place for as little as a couple more weeks or as long as – well lets not go there yet :roll:.

Talk soon ………


Monday 28th May

Day 30

Enjoyed the weekend, didn’t do a damned thing but hey …….

Usual stuff today with meeting nurses to check me over – skin dryness, mouth sores – stuff like that.

They seemed to be happy enough with the progress and so off to RT for session 30, time is marching on πŸ™‚


Wednesday 23rd – Friday 25th May

Days 27, 28 and 29

Apart from tube feed – back to the normal routine I am glad to say – the treatments are marching on and the weekend off too πŸ™‚

Talk soon


Tuesday 22nd May

Day 26

So off to RT with good news, the tube was in the correct place and feeding could be resumed – bear in mind the whole object of the tube feed was to prevent weight loss – but with 63 hours of fasting due to errors and stupidity doesn’t help.

Doctor was not happy with the ward, she rattled them up a bit I think, and rightly so!

Any way with all the problems sorted out I was finally allowed to go home – back to normality, or as close as it can get.


Monday 21st May

Day 25

Tube finally refitted at lunch time today – can’t be used until it’s correct location is verified by x-ray, (there is a small wire inside the plastic tube which can easily be seen in an x-ray.

The x-ray took place at 8:35 pm that evening, but it had to be verified by a Doctor, when? – tomorrow.


Sunday 20th May

Weekend

As I said yesterday my tube food ran out at 8:30pm last night and nothing being done to replace or remove the old stuff. I must say that I informed the nursing staff on several occasions the state of the situation and all I got was a “Yea we’ll get round to it”.

Well they did on Sunday morning to give me my medication, but of course the tube was now blocked, probably due to 12 hours of non movement in the tube. Numerous attempts with numerous methods were made to clear the tube, but all to no avail. So it had to be removed, followed by a few attempts to install another one, all of which were unsuccessful, and also very painful. (Tube not working = no painkillers).

After all these aborted refitting bids my sore was really quite sore now, so the fitting had to wait until Monday now, (don’t think I will be getting out then after all πŸ™ .

Roll on Monday ………


Saturday 19th May

Weekend

Nothing to report here other than my tube food ran out at 8:30pm and wasn’t replaced, and that Chelsea were lucky!!


Friday 18th May

Day 24

This was my original getting out day, but because my weight hadn’t stabilised as expected I was to be kept in a bit longer.

Nothing else to report other than new release date is Monday:-) – I’m not holding my breath though.


Thursday 17th May

Day 23

Today I was to have my final PET and CT Scans, but that didn’t happen because I was supposed to be on a 6 hour pre-scan fast, and of course no one had thought to stop the tube feed. Other than that today was just another boring lie about the ward day – I’m getting better at the old crosswords now πŸ™‚


Wednesday 16th May

Day 22

After another bag of food overnight I am beginning to feel a good bit better, in terms of food and eating, but, still in a lot of pain from other areas and as a consequence my intake level of morphine is rising – nice stuff that.

My final Chemotherapy appointment was scheduled for today, but, due to the eating problems that was put on the back burner. Radiotherapy is going ahead as normal however, which I am glad to report.


Tuesday 15th May

Day 21

Overnight saline drip connected up to me to provide me with some food – which did it’s job, because by now I am famished.

Feeding tube found to be in the correct place after an incident free x-ray (thank God, because it is quite painful having them fitted!), and soon I have more substantial food flowing into me, which will hopefully stabilise my weight loss.

The MRI Scan which was scheduled for later today goes ahead as planned. I am told I could be back out on Friday with a bit of luck – let’s wait and see!!


Monday 14th May

Day 20

First up today was an appointment with the Doctor. Having looked at me he decided it might be an idea to get weighed – which of course showed a loss of over 1 stone, not good when Radiotherapy is being applied on a daily basis. The main problem of course was the swallowing and taste problems I was experiencing.

Anyway, after much deliberation it was decided that I should be put in a ward for a few days with a tube fitted to allow direct feeding to my stomach.

So after the Radiotherapy treatment at 4.30, it was off to have the nasal tube fitted, which all went fine. Next up was to ensure that the tube ended in the correct place, my stomach as opposed to my lungs and to establish that an x-ray was required, so off I was taken.

The x-ray was taken with be standing up and stretching my neck slightly upwards with chin up into the bargain – the outcome of all of these positions was to create an itch in my throat which advanced into a cough which then ended up as a coughing fit which in turn meant I now had a tube going in through my nose back up my throat and out of my mouth πŸ™ .

So the tube had to be removed and when I got to the ward I had another one fitted. The x-ray in this case had to wait until the following day, so that was Monday, sleep now ………


Saturday 12th and Sunday 13th May

Another weekend off – nowhere to go but at least not in the hospital for a couple of days πŸ™‚


Friday 11th May

Day 19

Just another normal day – all goes to plan and better still no treatment on Saturday as there was last week.

Weekend off – big week next week though – Pet Scan, CT Scan, MRI Scan and Chemotherapy plus of course the usual five Radio therapies.

I’ll tell you all about it next week tttt (ta ta til then) πŸ˜• ……….


Thursday 10th May

Day 18

Well Day 18. I don’t know whether or not you recall but I mentioned that in Radiotherapy Treatments there would be 35 – well this is Day 18, in other words Radiotherapy Treatment No 18 – in other words I can now say I am more than half way through the Radiotherapy – now I can say woopee woo!!!

Reality says there is still a long way to go but for the moment it is πŸ˜€

Talk soon ………


Wednesday 9th May

Day 17


Today was event-less by comparison to yesterday, arrived at 5.30pm, treated at 6.00pm ish and back home approximately half an hour later.

Simples 😎 …….

Tuesday 8th May

Day 16

I think I should point out at this stage that my throat is progressively becoming more painful to swallow and as a result I have been finding it very difficult to get water over my lips, never mind any solids. Consequently I have not been importing quite as many proteins, calories etc as the medical team would like me to be doing – this took its toll on me today – allow me to explain……

First up today was my treatment machine No.11, as usual it all went smoothly and pretty much to time. Next was my clinic with the doctor, at which, I reported the problems I was having with swallowing and pain. After a few changes to my medication and a discussion about diet (again!), the only thing left to be done was to have my bloods taken.

So onwards and upwards, 3 floors actually. Upon arrival there was a huge queue and once I got my ticket I was approximately 25th in line. We patiently waited until it was my turn at which point I was feeling terrible, I thought I was going to black out and the only place to get a seat was in the blood letting chair. I must say the nurse was very good, she immediately called for a doctor who duly arrived and took all sorts of measurements.

Anyway it transpired that my blood pressure had dropped quite dramatically, causing me to feel as though I was going to black out – the reason was given, in all probability as dehydration.

The outcome of all of this was that the tests on my heart prove that it is OK, my blood pressure rose gradually back to normal, my colour went from whitish/grey back to normal, the sweat that was dripping off me while I was actually feeling cold, subsided. So after an unscheduled stop in a hospital bed for a couple of hours I was released and finally made it home – where I had a snooze, because I was also feeling very tired through all of this ordeal.

Wonder what tomorrow holds πŸ˜•

Elaine: OK, so that was from Sandy’s point of view!!! This is what really happened; we had been sitting in the waiting room doing a crossword to pass the time with me running back and forward to see how far the line had decreased. When we reached four ahead of us we made our way round to the queue as it would only be about five to ten minutes from there until it was our turn.

It got as far as the person in front of us getting called when Sandy said he felt he needed a seat; not “I think I’m going to blackout” and just as I was trying to get him back to the waiting room our number was called. He went shooting off with the nurse leaving me to pick up our bags, so by the time I got to the doorway all I heard was a kerfuffle behind the curtain, a nurse asking questions that weren’t getting answered and Sandy slowly sinking down the chair getting more and more out of it.

Talk about someone being grey, well this was more the putty shade on a Dulux paint chart, have a look, not a nice colour. He was definitely out of it though as the nurse was shaking him at one side and I was shaking from the other and neither of us was getting anywhere a part from this little voice saying “I need to sleep”!

All this by the way took place in a booth the size of the average bathroom with a chair reclined out fully, four nurses and me, an ECG machine, a blood pressure machine and a couple of trolleys, so you can imagine the squeeze — thinking about it, it could have been lack of oxygen that made him collapse or just the thought of having a pile of nurses running around after him. Luckily he rallied and I managed to get him home but now I’m back to nagging him about food and liquids, some men just never listen!!!


Thursday 3rd – Saturday 5th May

Days 13, 14, and 15

All of these days were simply routine in the sense that it was a case of report for treatment, have it done and go home again.

Perhaps the only thing to add here is that with Monday being a Bank Holiday, I had to report for duty on Saturday so that there was not too long a time between sessions – only problem was the appointment was at 8.15 am :-(.

Anyway we made it and next session will be on Tuesday, not Monday – talk then ………


Wednesday 2nd May

Day 12

A simple day was on the cards today – in for treatment at 5.48pm and then home – well that part was fine but if you recall my Dr Coyle appointment was cancelled and we had to arrive early to see Dr Prestwich as a result of that cancellation.

None of this however took any great time and it turned out to be a breeze – so shortly after the scan we were on our way home.

Oh by the way, I said in the heading this was day 12 – that means that since the total number of sessions are 35 I am now fractionally over a third of the way – Woopee woo, see you all next time ……….


Tuesday 1st May

Day 11

The game plan today was to see Dr Coyle at 1.00pm, but yesterday while I was radioactive, I was told that in view of the back to back long days to give her clinic a miss (on her instructions). So we duly arrived at 2.30pm for the radiotherapy, which all went smoothly.

Ah but then it was up to radiology for the MRI scan – once again my arm was punctured to insert a dye, non-radioactive this time though, but nonetheless time consuming to set it all up. As any of you out there will know if you have had an MRI Scan, it is one of the noisiest contraptions ever created, and is worsened when the radiology nurse forgets to turn the volume up in the headphones :-(. Simple mistake to make though, with sadly, my ears, taking the brunt of it.

6.00pm and today in St James’ comes to a halt. Home now ……


Monday 30th April

Day 10

The alarm goes off at 6.30, and it’s up, run the bath and get ourselves ready to depart at 7.30am – a bit early by my standards! But we have to be get to the hospital, which involves going right through Leeds city centre in the rush hour and then having to find a parking space in the multi-storey car park. Once that has been achieved there is still a bit of a walk to reach the correct wing in the hospital, and then the correct floor – basement no 2. My scheduled time for treatment is 8.24am and very close to that I am taken – 18 blasts from bottom left, 11 blasts from top left, 13 from overhead, 15 from bottom right and 15 from top right – a total of 72 zaps each of about 2-3 seconds, straight into my neck/throat/tongue – no wonder I can’t taste a damned thing!!

Now it’s off to “Nuclear Medicine”, this is where I get injected with “Fluorine 18”, a radioactive isotope.I am then instructed to rest/snooze for about 45 minutes to allow the dye to go to work. I get the shout and it’s off to the scanner – this is the clever part both scans are actually done on the same machine in the same session – in laymen’s terms I am PET Scanned on the way in, and CT Scanned on the way back out of the scanner – clever stuff really ;-). The whole process from arriving in “Nuclear Medicine” until departure takes about two hours.

All of the above is carried out with me being in my mask and bolted down to the sliding bed, to minimize my head and neck movement.

Now I am to go to have some blood taken for analysis, but the radiographer upon discovering this tells me I will have to wait another few hours as the half-life of the isotope is 2 hours. At this point I negotiate a reprieve and they agree I can do the blood bit the following day.

Next was a meeting with radiotherapy nurses who monitor how things are going – they really do a good job – but all of this took time too…..

So five and a half hours later we are on our way home – until tomorrow ……


Wednesday 25th – Friday 27th April

Days Seven, Eight and Nine

The last three days have been almost identical so I am rolling them all into one report.

Arrived in plenty time as usual for my appointments and the treatments all got under way in reasonable proximity to the scheduled time.

I have to say though that I am getting a bit fed up of the daily 20 mile round trips, which mostly take place at rush hour. They have to be done though.

On a more serious note, the pain in my throat/tongue is becoming progressively more painful, causing me to dip more into the armoury of pain killers at my disposal. I have also noticed degeneration of the skin tissue in areas around my neck, I presume caused by the high power x-rays passing through to the affected area. Taste too is still a major issue – I have very little πŸ™

I have a cream which helps with the skin problem, but it is still damned sore if accidentally touched in the wrong fashion πŸ™

I am on my two day break now, but lots will be happening over the next week – stay tuned……


Tuesday 24th April

Day Six

Should anyone be wondering I am counting the day numbers as radiotherapy days – there will be 35 in total, long time to go. Last one should be on the 6th June.

Met my St James’ doctor today – she seems to be very pleasant. Dr Coyle is the name.

Couple of things to say today though, I was told last week not to shave and now I am being told I must shave but only with an electric shaver not a wet shave – bit of a conflict there.

Also most of the drugs I have been give have been changed for whatever reason – just when I thought I was getting used to the ones I was on.

Big problem seems to be with my taste though, I am now having great difficulty tasting things as I could before, e.g. I have to rinse my mouth with salt water which initially made me screw my face up but now with the same mix I can hardly detect any salt at all. This is right across the board with all of my food, some things I used to love now seem a bit odd – I hope that settles itself out πŸ™‚ .

My throat (or rather back part of my tongue) is progressively becoming more sore – can’t see that improving too much either – only hope is that there will be stronger medication, should it be required.

Let’s leave it at that- talk more next time, take care and have fun πŸ˜‰


Monday 23rd April

Day Five

Again short and sweet – everything went smoothly and back home for typical crap TV viewing.

Enjoyed the weekend though – good to have a wee breather.


Friday 20th April

Day Four

Short and quick this one – still got hiccups – still feel nauseous and still taking the tablets, there are so many of them it seems like a meal in itself to take the dosage.

Anyhoo – weekend off – body gets a chance to have a breather – and I am happy about that πŸ™‚

Toodle oo…….


Thursday 19th April

Day Three

Well nothing really to report today other than for some obscure reason I seem to have developed a bout of hiccups – why I know not.

I can say it is accompanied with a feeling of nausea, which was forecast with the intake of chemo on Tuesday, so you could say things are going to plan.

Appointment was on time too – which is always good news.

Until tomorrow – tally ho……


Wednesday 18th April

Day Two

Today’s appointment for machine 11 was at 5.00pm, we arrived at 5.00 and were told Machine 11 was working – the service and MOT had been completed on schedule. I was called at 5.15pm, pretty good really.

Met my mask as usual, and was then bolted to machine 11 and after much whirring and buzzing and 15 minutes later we were on our way home.

Certainly a far cry from the day before. So back home and off to the quiz – no luck with that though – so home and to bed.

See you tomorrow πŸ˜‰


Tuesday 17th April

Day One – Treatment is now Live

Well where do I start – alarm goes off at 6.30am, rise and anything but shine, a couple of cups of tea after dressing and then it’s off to St James’, Elaine and Me.

8.00am report for duty, and after the usual filling of forms checking D.O.B, Name, Postcode etc (I suppose I could be an imposter trying to be given this cancer treatment – yea!!), still these are the rules.

Soon I am hitched up to a 2 litre bag of saline solution and the dripping proceeds, 2 hours later this bag runs out and another one of a different volume and liquid compound is added. Numerous injections are given too, thankfully not through my skin but into the feed line.

After having lunch, which was OK apart from the omelette which had the properties and colour of a super-ball, I suppose it was a bonus that it didn’t rebound up my throat!

So 12.00 noon arrives and I am now hitched up to the Cisplatin (Chemotherapy) bag, which is set to flow over a period of roughly 3 hours.

Oh, I think I fell asleep for part of that feed, anyway once that bag was complete along with some more additives along the way, it was time to be flushed out with another very large bag of saline. Once that was up and running I was told to report for Radiotherapy Treatment, three floors below, so of we went with the wheelie stand.

Ah but things are never simple, the machine I have become accustomed to, is undergoing the equivalent of a service and MOT, so I was moved onto another one – along with everyone else – so we were now double the number on this one machine, fabulous!

Time passed and I could sense it was getting close to my turn, but the 2 hour dripping saline reached the end of it’s drip (yes there was a big queue) and the machine on the stand I am pushing about everywhere started to emit an alarm to signal that fact.

Well they couldn’t do anything about it in that department, so back up three floors to have it reset. The staff nurse then decided he would keep me there until all of the liquid had filtered into me.

Eventually back to level 02 where I was reunited with my mask, and had the treatment which lasted 20 minutes tops. As I left I noticed only one lonely soul remaining in the waiting room, which at the start had been absolutely packed, so I wasn’t last, but near as damn it πŸ™„ .

Anyway to cut a longer tale short – we finally got back home around 7.30pm, knackered and loaded up with more drugs, creams, mouth rinses and so on.

As I mentioned earlier in dispatches, I have to report every weekday for radiotherapy, excluding bank holidays I noticed 😯 .

Hopefully tomorrow will be a bit easier and quicker – famous last words I’m sure.

OK we will talk soon – onwards and upwards…….


Monday 16th April

Day Zero

Radiotherapy Machine

Well today I had a meeting with one of the nurses who will be involved in tomorrows Chemotherapy – she explained the procedure for introducing the drugs – basically intravenous. The drug that will be used is called Cisplatin – a very powerful and toxic drug, so much so that I have been warned against having un-protected sex because it can cause problems should I get Elaine pregnant (at her age – some chance) πŸ˜‰ – more tomorrow.

Second meeting was with another nurse who talked me through what would be happening in terms of the radiotherapy – more tomorrow.

And the third meeting was with the Radiotherapy machine (pictured right – click to enlarge) – code named MLC LA11, no idea what that means but that is how it is referenced. Anyway I was placed in position on the table and once the radiographers had me exactly where they wanted me we had a dry run, all as preparation for tomorrow – the real thing.

My Mask

Of course it wouldn’t be a complete run without the mask that I have referred to in the last spell, so here it is (pictured left- click to enlarge if required) – and true to form I was placed inside it once again – in order to have precision placement, which of course will be required on the day and all the others there after!

So approximately 20 minutes later that was it all over – the dress rehearsal was complete and was a success – now it is just a case of getting on with the live stuff tomorrow – here’s hoping

More tomorrow ……


Thursday 12th April

Today was MRI scan day (evening actually). I think I mentioned to you that my scan on the 4th was cancelled along with the one on the 10th for whatever reason I know not, but what I do know is that both of these scans must have been amalgamated into a a very lengthy final one before the real stuff starts next week.

Over one hour in a tube not much wider than my body with my head in a head brace for 40 minutes, hardly daring to breathe because any movement gives a lousy result apparently, and then a quick turn around to fit the mask that was made for me, and back into the tube.

Of course with the mask on I can hardly breathe at all – it is horrendous for 20 minutes; I can only imagine it to be like being buried alive. God forbid anyone who suffers claustrophobia having to go through that; all combined with the incredible noise that the scanner makes, not nice :-(.

Eventually I am extracted from the tube and unbolted from the sliding table – my ears are ringing and my mouth is full of saliva, because I can’t swallow with the mask on; but when the mask is removed I manage a huge swallow followed by a huge breath, kind of like the ones portrayed in films when someone recovers from drowning – believe me that is what it feels like.

Anyhow that’s enough for the moment, I have a few days off until the next series of sessions on Monday (3 of them) – dress rehearsal day.

Has to be done tho’ – talk soon πŸ™‚


Friday 6th April

Sorry about the delay from the last posting but in all honesty I have been a bit tired – I think with all the drugs I have been given.

Aspirin for thinning blood, Simvastatin for lowering cholesterol, Diclofenac Sodium and Co-codomol for pain killing, Lansoprazole to prevent gagging when swallowing, Laxido to counteract the constipation fron Co-codomol; most of these drugs are numerous times per day. More than I can say for sit down visits to the loo πŸ™

Anyhoo, two nurses arrived at my home on Tuesday – I think they just wanted to see what the home surroundings were like to be honest – I still can’t fully work out why they were there, although they were pleasant enough.

Wednesday arrived and I was scheduled to attend St James’ Hospital for an MRI scan, so off I headed at 3.45 pm for the appointment at 4.50 pm, (had to allow for traffic in Leeds). The traffic however wasn’t as bad as I expected and I arrived 40 minutes early. Rather than go to the MRI Department straight off, I thought I would grab a coffee and wait until nearer the time.

At 4.45 pm I made my way to the MRI and checked in, having handed over my appointment letter and the bar code thereupon scanned. 5 minutes later I am told that they have no knowledge of me getting a scan – at this point I asked how it was possible that I was successfully logged in on their system if there was no knowledge of me, and furthered their lying red faces with the actual letter.

Of course this meant that, Mr or Mrs NonExistent (upstairs of course) duly got the blame and I was sent home – not amused I may add – a rush hour 22 miles round trip, with associated petrol costs and an expensive Β£2.80 mug of Costa coffee. Needless to say I was not a happy chappy.

So having got home, and also calmed down, it was off to the pub quiz – which Elaine and I won – thereby returning a little smile to my chops.

March on gang – talk soon πŸ™‚


Thursday – 29th March 2012

9.30 am and we are at Pinderfields Hospital in Wakefield; enough time for a quick bite to eat – scrambled eggs in my case as mouth still sore from last weeks abuse.Very enjoyable breakfast nonetheless.

10.00 am and we have reported to Gate 25 – sounds more like an airport doesn’t it – but that is the way the Mid Yorkshire NHS have decided to number their wards.

First person I have to see is Lisa who is a Head and Neck – Specialist Sister. She is a very pleasant lady and basically makes sure that I understand everything that will be happening and assists with any problems. This proved to be a very informative meeting – lasting for about an hour.

Second up was Cathryn who is a Head and Neck – Dietitian. Her task was to try to keep me as fat as she possibly could prior to all the procedures getting under way; basically making sure that I have some reserves when it reaches the stage that I don’t want to or can’t eat! Good news here is that I am being encouraged to eat everything I am usually told not to – cakes, chocolate, full fat milk, plenty of sweet things with lots of sugar, – you’ve got the picture.

Third and last is Nina who is a Head and Neck – Speech Therapist. Nina seems to be quite happy with me at the moment – she can understand me which is a always a good start, but later on down the line that might all change when the radiotherapy takes a hold.

There are different scenarios here though, so there are lots of possible outcomes – but lets not go there quite yet.

All in all and 2 hours later, the three specialists seemed happy with the way I am at the moment, so – onwards and upwards!!

See you next time…….


Monday – 26th March 2012

Arrived at St James’ at the back of 8.00 am having negotiated the already busy rush hour. I was so early in fact I was sent away to have a coffee or something until they opened at 8.30 am. Ho hum!

Having returned at the correct time I was taken to a prep room, here a cannula was inserted and the nurse dutifully tested it with saline solution – all was well. So now I was given an injection of radioactive glucose and told to relax on the bed for 45 minutes, which I did, I was then taken to the scan room. These machines are huge by the way!

It was at this point I was reunited with my mask. It was fitted over my face neck and shoulders and then snapped into position on the solid mattress I was lying on. I could not move and I could hardly breathe if truth be told. All in all it was a bit scary – I was glad I was not claustrophobic – that would have been a nightmare.

Anyway the scan got under way and fortunately it was a fairly brief affair with the mask in place, so once the upper body had been scanned the mask was removed and the scanning carried on for another 20 minutes down to my hip level.

11.45 ish, cannula removed, I was on my way home to have a cup of tea which had been banned (along with food) until the scanning was complete.

Not sure why but my lower jaw aches like hell now, hopefully the pain will recede as the day goes on.

Next scheduled appointment is on Thursday 29th March at Pinderfields Hospital in Wakefield – it is all to do with Oral and Facial – I’ll keep you posted πŸ™‚


Friday – 23rd March 2012

Well the dental bit is complete now – so it is on to the mask. The mask is moulded to my features and is used to accurately position my head and neck so the zapper will be zapping in the right place all the time.

It was pretty much a warm flat sheet that was simply pressed into shape over my face, neck and shoulders – rather Darth Vaderish but in white mesh.

Anyway with that done my consultant explained in a bit more detail what would be happening further down the line – very enlightening but I’ll leave the details until later.

So apart from that – no nasties today, and I get the weekend off πŸ™‚ Back on duty at 8.30 Monday morning though for a PET Scan – I’ll leave you to google that one!

Talk soon πŸ™‚


Thursday – 22nd March 2012

Arrived at Leeds Dental Hospital at 10.10, taken to the “chair” at 10.30 – whoopee they are running to time today. A few teeth lighter I am on my way home at 11.05.

They had to use a couple of stitches today, which means that it is much more painful than yesterday.

Anaesthetic now worn off and it sure is more painful – anyway enough of today – it’s off to Jimmy’s tomorrow to get the positioning mask made.

I have to report for 2.00pm – see you tomorrow πŸ™‚


Wednesday – 21st March 2012

11.00am arrival at Leeds Dental Hospital, a bit early for the 11.30am appointment – but you never know what the traffic and parking will be like. Finally seen at 2.00pm, now of course I am starving and becoming more irate by the second. I am informed that three appointments will be needed to remove all the teeth, bar the two anchors that are to be left at each side at the bottom.

The problem here though is that I have to be in St James Hospital on Friday for the mask making, so the dentist decides that she will remove more teeth than she had planned – bottom line, I now have none on the top and only one on the bottom right; the rest get demolished tomorrow.

As I write this I am drooling with the effects of the anaesthetic and struggling to sup soup through a straw. Should be interesting when I am let loose on a real cup of tea, or maybe even a beer. Not to mention solids!! I’ll keep you posted.

More tomorrow……..


Tuesday – 20th Mar 2012

9.15 am and into Leeds Dental Hospital – Mr Nixon seems to be my main man. he tells me after an oral examination and an x-ray that the game plan is to remove all of my teeth with the exception of one on the bottom left and one on the bottom right. Apparently the radiotherapy can cause problems with the teeth sockets at a later stage – so this is preventive.

The removal of teeth will take place in two stages; the first batch tomorrow (Wed 21st Mar 2012) at 11.30 and the second lot the day after (Thu 22nd Mar 2012) at 10.30.

More tomorrow ……


Monday – 19th March 2012

Ok so I attended Jimmy’s and it was explained to me what would now be happening. In short I have to have a mask fitted to ensure accuracy when it come to firing the high powered x-rays (radiotherapy) at the contamination in my tongue.

The Doctor covered pretty much everything that will be happening but I will come to that in later posts.

So what happened today – well I had my height measured, weight taken, yet another blood sample and also swabs of certain body areas to be sent off for MRSA testing – standard procedure apparently.

An appointment was made for me at Leeds Dental Hospital, so that’s where I’m off to tomorrow.


Sunday – 18th March 2012

It was around Christmas time when I became aware of an ache in my throat, along with a swelling in a gland in the left side of my neck. I didn’t really give it much thought as it could hardly be described as painful. January came along and the niggle in my throat was still there, as was the swollen gland, so I thought it was time to go see my GP.

Nothing was visible to my GP as he inspected my throat, so putting it down to an infection I was dispatched with a prescription for Penicillin, which I dutifully took as suggested. After the weeks course, plus a weeks breathing space, there was no improvement – so back to the GP.

This time he suggested an appointment with Ear Nose and Throat (or whatever the modern equivalent is), along with another course of Penicillin while waiting for the appointment.

So, after a CT Scan, MRI Scan and a Biopsy under full anaesthetic, it has now been decided that the problem is not my throat but is in fact cancerous cells in my tongue. Not good news!

Tomorrow (19th March 2012) I have to attend St James’ Hospital in Leeds to begin a course of Radiotherapy, possibly combined with Chemotherapy, I will keep you posted.