2007-09-28 to 2007-10-03 — Calendar entry — Sarah visits Vienna

What is a shame is that Sarah is in Vienna and here I am in hospital and not able to see her as much as I'd like. She arrived on Friday (28^th September) and leaves on the 3^rd — the day after my birthday. When this booked it was thought that I'd be having out-patient radiation treatment — so we'd have been able to spend quite a bit of time together. As it is she visits but it isn't the same — though much better than nothing. We play chess — when I lose I console myself that firstly I taught her, and obviously did that well and secondly that I am a poorly man who is currently not at the height of my powers!

2007-09-26 — Newsletter — Tumour progress report

Dear All,

Was thinking about the last email I broadcast, wondering if I exaggerated for sympathy, but thought if anything it was all much worse.

This week I’m back in hospital, being fed through the nose and am starting to grumble about little things so things are definitely getting better!

Last week I could not see how it could be possible to get through the remaining treatment — this week I know I can do it with all the help I can get here.

So now the problem remains the pain in my mouth. One of the irritations is that it changes every day. Some symptoms persevere, some go away but always something new takes its place. Currently it’s my tongue bleeding.

A morphine based gel was made for me but it doesn’t seem that effective. I have to smear it on affected areas and that’s effort in itself unless I use their ‘patent’ mouthwash first.

This mouthwash has been with me from the first day — comes in enormous bottles when you get it on prescription for home. It is the only thing that seems to help. Problem is that you should take it between 3 and 9 times a day (everyone says something different) and I find it works for about an hour…

And last night’s (Tuesday’s) problem — diarrhoea. About 1:00 am and of course my underpants and pyjama bottoms affected. Not much but enough for me to plot ways of ‘getting away’ with it. I worried about getting new pyjamas, telling people — all good ‘early hours of the morning’ problems that seem immense, insoluble and very important and are of course nothing of the sort.

I was worried about this damn disease taking away my dignity, forgetting that only I can take it away.

David

2007-09-24 — Newsletter — Back in hospital plus David’s unpleasant week

Dear All

Am sending a group letter as you're at different stages of the 'knowledge' (hence the detail) and all of you have been so kind with help and well wishes

I was released from hospital last Monday (17th) having completed the week of chemo and radiation together. There were minor side effects but from then it all went quickly downhill. I think I can safely say that this was been one of the worst — almost certainly the absolute worst weeks of my life. Every day the symptoms got worse. Ulcers sprung up in my mouth. Some going away after a day or so but always some new to take its place. Saturday it was difficult to speak, Sunday it actually hurt to do so. Sore throat came and stays. I registered the problem Thursday and got a useless painkiller...

I couldn't eat much at the beginning but by Sunday it was impossible to even drink.

I spent quite a lot of each day just huddled up in bed.

Anyway today I had an appointment with 'my Professor' at the hospital and he whisked me back in as in-patient. I was put on two drips (one in a vein, the other a tube down my nose into my stomach — I have an elephant trunk nose, albeit an thin elegant one). My evening meal was chocolate pasta down a tube if I heard right.

Anyway I am really happy to be under safe hands here. At the worst point I was considering close to begging them to take me back. This not needed as the Prof said immediately I must come in — at which point I burst into tears which shows how far from the normal Strong-Silent-David you all know I'd gone

I'd hoped this would happen and so had made piles and lists for Margaret (for those who don't know of her, she is my ex-wife who lives in the same block of flats and who has been an enormous help throughout all this) for packing and Chris (son and another tower of strength) brought it all in tonight — including my laptop hence this message.

A pain specialist has been to see me and I'm getting a morphine based paste to use.

The Prof says that reaction varies from virtual none to extreme like mine. Those who have the least reaction have the downside that the tumour also ignores it. Mine tumour has apparently got significantly smaller.

So the radiation goes on (my blood work has gone haywire and there is a small chance this may make them stop the treatment which they are really hoping not to have to do) but I stay as an in-patient.

I still have the pain but the infusions and the fact I can now just press a button for help has improved my spirits greatly.

Many thanks to all of you for the help you given me with all your thoughts and prayers and emails of support

David

2007-09-17 — Calendar entry — I go home

As expected I was sent home today after the radiation session was done. So for the next four weeks the plan is that I come in 5 days a week for radiation as an out-patient. Takes a bit over an hour travel time in each direction so this cramps my daily schedules somewhat — but then what else do I really have to do!

2007-09-16 — Newsletter

Dear All,

Well the chemo part is over and it looks almost certain that I’ll be going home tomorrow after my regular (for the next 4 weeks) midday radiation session.

The last chemo bag (there were a total of five 500 ml bags) finished about 15:00 Saturday. It should have been earlier but the drip feed machine was inaccurate. And of course I calculated it all and made a spreadsheet to chart progress — which the doctors and nurses ignored of course. [It was set to 24 ml per hour but was actually operating at about 19 — anyway end of geek stuff, but when there is not that much to do it is easy to get obsessed].

So I was free of the bag and trolley and could go and buy edible food from the lobby and could bring up yoghurts and things.

The problems have been with side effects — the chemo gives me nausea spells which are not too bad and should reduce now. But the radiation is hurting the inside of my mouth — it is very dry as saliva glands react faster to the radiation than the tumour and on Friday I got an ulcer and today my tongue is red and sore. This is all unpleasant — it is not an extreme problem and I can put up with it but it makes it difficult to eat much of the stuff they bring — fairly dry bread, schnitzels, vinegary salads. So eating has been difficult but when I’m home I’m going to do pasta with ‘gentle’ sauces — so that problem should be minimised.

They took blood samples yesterday and today (these are the deciding factor in whether I can go home Monday) and the duty doctors said the results were excellent so they it almost certain for Monday but the final decision is made by the Professor! But they removed the catheter thing with all its dangling tap things (3 of them) from under my collar bone this morning. That was done by the two young female identical twin doctors who work on the ward.

So, anyway the chemo is over and this hospital stay nearly gone. To come is 4 more weeks of radiation, 8 weeks of recovery from that and then the operation. The operation will be bigger than I originally understood — they remove the upper set of lymph glands in my throat (the Professor made a ‘cutting my throat’ gesture to indicate how they will do this). If those lymph glands are clean then that is it, but if there is anything malignant then they operate a second time to remove the lower set of lymph glands. There is apparently a microscopic ‘fleck’ visibly on the scans and so the upper glands are removed and it will be analysed.

Had one bout of disbelief last night — a “how can this be happening to me” experience but otherwise am in good morale considering and will be a lot better when I get home! It is not that comfortable here and I miss my comfy things!

David

2007-09-11 — Newsletter — Tumour progress report

Dear All,

The short news is that the tumour has not spread anywhere else and has not grown in the 5 weeks or so since it was detected. This is good as it means that the long-term prognosis is good

The long news follows. It is long basically because I've certainly got time on my hands!

Well the treatment has started. After they found the tumour there was a period of about 4 weeks of scans and tests. I've had 'nuclear' scans (a full body bone scan which shows my skeleton and which I want to copy for my web-site, and a 3D scan of my head which was extremely claustrophobic and unpleasant). They've done X-rays and CAT scans and blood tests galore. They made a mask (Hannibal Lector style) of my face and then did a simulation of the radiation with the mask and a CAT scan so as to be able to aim the radiation device accurately. The made teeth and gum shields for wearing during the radiation and also for use as an 'applicator' for a tooth gel to minimise tooth damage.

I was in hospital for two nights while they did an operation to tattoo all round the tumour so as to know where it was after it is shrunk by the radiation therapy. That was a full anaesthetic job.

There are several hospital departments involved (this is the main Vienna hospital) and everyone is nice and seems competent but their coordination is not so good so I ended up making much more visits than strictly necessary (at 90 minutes travel time each way).

Now I'm in the hospital for a week while they do the first week of treatment. This is radiation therapy (two bursts of about 40 seconds each) coupled with chemo-therapy. It is the chemo that is the reason that I have to be an in-patient — it's a 24 hour drip feed — removed only for an hour or so while I go for the radiation. There are only 5 days of this but I had to come in a sparrow's fart on the Sunday for a mini-operation to insert the catheter for the chemo under my collar bone and then when the five days of chemo are over they do blood tests and will hold me here a few days more until everything is settled down.

This whole approach is adopted mainly because it has a good success rate but also because it involves lower doses of chemo and radiation. So the side effects should not be too big. They expect none from the chemo but the radiation will cause dry mouth problems and maybe lethargy as it accumulates. I'm not likely to lose hair though my beard hair may stop growing for a few months

I'm feeling fine, though a little bored. But did bring enough books and my laptop — can get internet though rather slowly and can watch DVD's on the laptop so am OK for entertainment. Have my own room and the food is edible (though only just). Feeling restricted as I have to push the drip feed trolley thing around if I want to move more than a couple of feet. It is a powered thing so also have to plug it in — though it has a certain amount of battery power but essentially I'm fairly confined. The feeling of freedom when they disconnect me for a radiation session is amazing (gives me a chance to shower too and visit the hospital shops).

Overall I have confidence in the hospital but it is clear that their priorities are not the same as mine so there is a lot of waiting for things. I'm trying practising serenity and trying not to get exasperated over things which I will never be able to alter!

After this week is over there are four more weeks of radiation therapy (without the chemo) which is done as an out-patient (5 days a week). This should all shrink or even disappear the tumour. Then they wait 6 to 8 weeks and then operate to cut out the area where it was (plus a safety margin) — which is why they did the tattoo in the beginning. My first tattoo and nobody can see it and it will end up being cut out.

The operation timing depends on how I react to the radiation but looks like it will be early December. Might be sipping a liquidised Christmas turkey through a straw if there is a delay!

David

2009-09-10 — Calendar entry — first radiation, first chemo

So, my first day of therapy dawned.

My regular time slot for the radiation appointment was set at about 12:30 — once this time has been set you can't change it. As I remember I was offered this slot and an earlier — about 8:00 slot — which would be fine for while in hospital but not so good for the remaining 4 weeks as an out-patient.

You wait outside the radiation machine room and when your name is called you enter, put your teeth shields on (you carry those with you to and from the radiation) and you lie on the bed of the machine. They put your mask on (they keep this for you — not sure why they couldn't keep the teeth shields also). You also have a rubber sort of door-stopper type of thing to put between your teeth to keep your tongue down flat.

For me the radiation took a couple of minutes for each side — a total of about 5 minutes. However in reality aligning the mask normally took quite a lot longer. Towards the end of the therapy when my mouth was really dry and the teeth shields and the rubber stopper hurt my mouth it seemed much longer.

Anyway when I got back to the ward they started the chemo. The chemo is administrated through a sort of powered drip feed — I assume powered so that the amount of flow can be controlled. Because it is powered it has to be plugged into an electrical connection — though it has a smallish battery for in-between times. It is connected to the catheter thing under my collar bone. It should last about 20 hours giving a short gap each day when I go for the radiation and am also free FREE FREE!

2007-09-09 — Calendar entry — back to 18-Dora, an operation

So this is a Sunday admission as the radiation and chemo treatment starts on Monday and they have to insert a catheter — not sure if that is what it's called — it's to be a 'permanent' IV just below my collar bone.

I had to arrive at the hospital early and not have anything to eat or drink. I spent a load of time just waiting in my room but at least this time I'd brought loads of books and my laptop computer with some DVDs.

It wasn't until about 16:30 that the thing was done. It was done under a local anaesthetic but done in an operating theatre. The area was sort of screened off and a sheet was over my face making it rather hot and a little claustrophobic.

I hate, really hate, this type of thing. I want to know what is happening and how long it is going to last. I also want to know how long it has being on — this is all a control thing — or rather a feeling that I am not in control — which always makes me nervous. Same thing that makes me dislike dental treatment — not pain but not knowing what is happening to me.

Anyway it probably took about 15 minutes though it seemed longer. I swear the assistant asked if he could do it and the surgeon let him —- but I probably invented that.

2007-09-07— Calendar entry — teeth moulds

I think they forgot to do this stage at an earlier appointment, but I came in so they could make moulds of my teeth — like the ones dentists make when you are going to have crowns made. It was done by Dr Nell, one the nice friendly doctors from the Cranio-, Maxillofacial and Oral Surgery (Mund-, Kiefer- und Gesichtschirurgie) Department.

The moulds are going to be used to make shields to protect my teeth from the radiation. I was to get to really hate those shields over the next few weeks.

2007-09-06 — Calendar entry — Simulation

Today the radiation people did a simulation run. As far as I understand this is how it worked. I had the mask on and they had the CT scan in some form in the simulation machine. This machine sent a light (laser perhaps) beam out where on a real radiation machine the radiation particle beam would come. Using the position of the tumour from the CT scan they were able make sure that the beam would precisely aim at the tumour and as little as possible anywhere else.

This is how I think it happened but I didn't ask enough (difficult with the mask on) and my medical and technical German didn't help too much. It didn't seem that important to know all the details.

It seemed a funny combination of really high tech (CT data, lasers) and low tech (a red magic marker was used to mark on the mask where the beam should be focused).

It does show how incredibly technical so much medical treatment is these days.

2007-09-03 — Calendar entry — a mask is made

Back to the radiation people. First of all a mask was made. A sort of semi-transparent material was warmed up and moulded to my face. The mask has a hole where my mouth is but covers my nose and eyes— though it was possible to see through the mask even though it covered my eyes.

I was going to get to know my mask very well over the next month or two.

They then did another CT scan of my face region.