Chemo is evil

A simple title and a simple message.
If you have cancer try everything you can before you try Chemo and even then think more than twice before you start…

Over the last 4 years, I have had multiple surgeries to remove tumours from various parts of my body. Unfortunately in July my scan showed multiple small tumours in my lung, yes singular I only have one now.
There was no way that surgery could help and I was advised that Chemo could help and extend what life I had left.
I was dubious, I’ve always said quality over quantity, but I thought I’d give it a go.
This was one of the worst decisions I’ve made in my life, It has cost me 2 months of what time I have left.
I became a dull, listless, unmotivated, tired, sad sack of a person with painful extremities, diarrhea or constipation at random, a constant feeling of nausea, bruising that wouldn’t go away, sensitive gums and more.
The final straw came when I was rushed to the hospital in an ambulance because of breathing difficulties. After a CT scan, they found that I had pulmonary embolisms caused by the chemo and will now be on blood thinners for the rest of my life as a result.

That was 11 days ago, I was due to have an infusion but they cancelled that because that was the cause of the embolisms but I should continue with the tablets.
7 days ago I decided to stop everything as I was feeling worse and worse as the treatment went on.

I believe that it will take another week before the shit is fully out of my system but already I am feeling alive again, positive and full of energy.

Chemo was a serious mistake, if you have cancer don’t make the same mistake,
live life! don’t be reduced to an unmotivated useless specimen!

Three score years and ten

Well, I never expected to get here 🙂

Of course now I’m here 70 doesn’t seem old at all.
I remember agreeing with the “never trust anyone over 30” idea and then suddenly I was over 30 and it was good.
I didn’t really notice 40, I was far too busy.
50 should have been a milestone but again life distracted me.” Maybe if I’d lived here I’d have celebrated as “meeting Abraham” is widely celebrated here.
60, I knew I should be feeling old but I wasn’t so…
70, well, I didn’t expect to get here because of the cancer but I don’t feel old. Old people are in their late 80’s and more!

Funny how your concept of old changes.

Physically I am of course ageing, but mentally I think I’m more active than ever. I’ve never been able to remember peoples names anyway 🙂
Yes, I do sometimes find myself in a room wondering what I came here for but that’s the aliens in the doorways with their mind wiping devices. They realise that as you get older you see through their cloak of deceit. Or is that politicians…

The sun has got his hat on

Well after this morning’s dismal tale of woe…
The sun has come out.
I’ve just ridden 20Km on my bike through a totally new park that is just opening. It’s been 4 years in the building.
A huge wildlife reserve with canals and lakes all over, bike and footpaths and no motor vehicles.
It’s fun cycling along and realising that it’s actually a huge flood defence system. with dykes and lower areas all ready to catch huge amounts of water.

Seeing such a forward-looking project is a joy.

It’s getting to the point

The next line is “where I’m no fun anymore” maybe for me right now the I’m should be changed to life.
I’m losing my positive attitude as my life is slowly whittled away.
Nothing major, just lots of little things.
I can’t sit out in the sun because the chemo makes my skin hypersensitive.
I have to cough more because the chemo causes me to create more saliva, this results in more swallowing which is an issue because of the surgery to deal with cancer in my trachea.
I have to concentrate on swallowing otherwise liquids go the wrong way and I start to drown.
I cough as a result. Intense coughs which strain the area around my stoma so whenever I cough I have to hold my stomach still.
I bleed more easily which causes problems with my stoma when I cycle.
I can’t eat when I want to, I have to eat to fit into a pattern that works with my chemo, a pattern that is totally different from how I normally eat.
And on and on it goes.
PMA, well yes but there does come a point.
A point that I thought was far in the future but one that seems to be rushing towards me at an alarming rate.

Hmm, a different future

I had my 4 monthly scan 3 weeks ago and it wasn’t good news.
My CT scan showed a lot of very small shadowy tumours, far too many to be dealt with via surgery. I was passed on to the Chemo specialists.
I am starting Chemo next week, it’s a mixed approach, tablets daily, the same drug I had 4 years ago but which they think is right for now and a 3 weekly infusion of another drug.

Neither of these drugs will cure cancer but they will slow it down and if I’m very lucky may well stop it.

I asked about life expectancy and was told that it was very difficult as I was “an anomaly” in that looking at my earliest scans from 4 years ago they would have said that I had 2 years or maybe 3 at best. Statistically I should be dead now 🙂
Bearing that in mind they said they would guess at 2 years but would update that as treatment continued!

So, The Black Knight continues 🙂

Not so clear scan!

I haven’t posted since October and my clear scan, this was followed by a scan that showed a tumour in my trachea.

A number of extra scans later, MRI, CT & PET, I was told that this was a serious tumour and that operations on it were rare, very rare and survival chances were, err, less than optimal.

As without the operation survival chances were zero I didn’t see much of a choice!

I was due to be operated on in March but after a new set of scans showed it growing quickly I was admitted to LUMC on the 3rd of February and operated on on the 4th.
The surgeons admitted that they hadn’t done this operation before because it was so rare. I woke up to find my chin stitched to my chest.
This was to make sure that I didn’t move my head up which could/would cause the stitches in the trachea to part and in their words “you’ll drown in your own blood faster than we can get in there to fix it”

I think they were trying to convince me not to move my head back 🙂

I was fed through a nose tube because I couldn’t swallow.
After a week they removed the nose tube at which point we found out that I couldn’t swallow liquids.
Anything liquid went straight into my lungs. During tests I was told that I now knew what waterboarding felt like!
I could manage to swallow things like yoghurt and kwark and they became my main diet.

I was still unable to drink when after 2 weeks in hospital they sent me home.
I had dietary instructions and food supplements to keep me going until I could swallow.
4 weeks after the operation I managed to swallow some water for the first time. Nothing has ever tasted so good 🙂

I still have to be very careful drinking as it’s really easy to end up sending liquids into my lungs. This is because my trachea was shortened considerably and the balance between trachea and oesophagus is wrong.
I still can’t swallow pills.

The good news is that they believe that they have finally removed everything.
I feel great, better than I have in years.

My next scan is in June…

Clear Scan

No, not the kind you use in a camera for shooting monitors.
The kind that shows tumours..

Scanned last week saw my surgeon this morning, clear.

What else is there to say?

Repeat in 4 months and I’ve asked if I can have the scan and the results closer together because, as Tom Petty says, The waiting is the hardest part.

A small buildup of fluid in my partial lung bet that can be dealt with by puncturing and draining if it gets worse. I only really notice it if I go for a long ride so it can wait because it is incredibly painful!

Recovery from surgery, again!

I had throat surgery on Friday to try and fix the problems created by the surgeon who did my lung op and accidentally nicked my vocal cords…

I’ve has 2 previous attempts to fix this by injecting fillers into the vocal cords but each time it wore off in a few weeks and I was left whispering with a very hoarse voice.

5 days ago on Friday, they tried a new approach which meant a GA and a much more invasive approach.

First, it seems to have worked! my voice is approaching near normal sound. I can’t shout or whisper but I can talk in a normal way and I sound like a normal person rather than someone who makes obscene phone calls 🙂

The downside is that it has hurt like hell but hey! ya don’t get owt for nowt.

The result is that you can expect to see me at exhibitions and conferences doing my best to upset everyone 🙂

LUMC, Leiden University Medical Centre are brilliant.

3 years on

It’s 3 years now since I was told I had 9 months to live.

I’ve had my arse removed, a chunk of my liver removed and half a lung went this year.

The thing is that I’m doing well, as fit and healthy as I’ve ever been for a very long time. I cycled 40K yesterday.

I croak still, they’re working on fixing the issue with my vocal cords but I do voice exercises that help and in 8 months they will be able to operate to fix it if I’m not happy with progress in a non-operative world 🙂

The reason I blog about cancer is to try and encourage people to not give up. It can be a killer but giving up is the major killer, not the disease!

It’s a hell of a shock when you get the diagnosis, it’s not real, that hits later.

I worked to get everything sorted for imminent death and that’s been really useful. I’ve dealt with all kinds of things that people put off until it’s too late.

I’m more relaxed and happier than I have been for a long long time.

So if you are diagnosed with something horrible, chill, it’s not the end of the world 🙂

I get knocked down, but…

It’s been a long time since my last post and that’s because I’ve been battling with my third bout of cancer.
It was harder this time, for a number of reasons. The main one being that the last one, a third of my liver removed, was so easy.
This time there were a few delays, bad timing, the scan was done just before the Christmas holidays so everything following was delayed.
Then they decided that keyhole surgery was not possible this time and that I had to wait for their ace slice and dice guy.
I like keyhole surgery, the first 2 were done this way and the recovery period is much shorter, much much shorter.
Anyway, I was cracked open, a translateral incision which means that he went in from my side and my back, spreading the ribs apart and removing bits that were in the way.
4 days after the operation they removed the drainage tubes from my chest and the next morning the remains of my left lung collapsed.
I forgot to mention that when they started the intended to remove a single lobe but when they got in they removed a wedge of another lobe, lymph nodes, and bits from my thorax.
so, to deal with the collapsed lung they had to insert a new drain. This was inserted from the top of my chest and pushed down until it bubbled and hissed.
I was warned that they could only anaesthetize the start of the incision and that I may feel some discomfort as they inserted the metal tube.
Discomfort! if I hadn’t already had radiotherapy on my arse it would have been the most painful thing ever and with no painkillers.

19cm of steel tube rammed in.

5 days later after it was removed I was allowed home. A total stay of 12 days instead of the expected 5 or 6.

It’s taken 10 weeks to get back to something close to normal but I still tire easily.
I had to prove to myself that what my surgeon had told me was true that I would be back to normal as they were only removing stuff that didn’t work anyway!

Last week I flew to Croatia to go to Plitvice Lakes National Park and to walk/climb 12 waterfalls and lakes, something I’d have found hard before the op 🙂
I made it but spent the next day sitting on the Riva in Split recovering.

Of course, because this has been an ill-fated adventure, when they removed stuff from my thorax they managed to nick and paralyze my left vocal cords.
I’m being operated on tomorrow to try and fix this which is a bit scary as I fly to LA on Wednesday.

Looking forward to a week in LA…