Let’s update this thing

Sarcoma radiotherapy finished

Monitor every three months. Fingers crossed that’s the last we’ll see of it. Due to still-missing vena cava I’m still wildly out of breath every time I do something like run for a train, which I did just now, 30 metres plus 30 stairs, and thought I might pass out before I recovered. Took fully 10 minutes to get my breath back.

Prostate radiotherapy about to start

24 sessions, every weekday til end of August. About 45 mins to an hour each; they are longer than last lot, as bladder has to be at a known fullness before they can zap me.

Meanwhile thanks to testosterone-vanquishing wonder-drug Zoladex my levels of said manliness-hormone have dropped to almost zero (that being the ultimate aim according to prostate radiotherapy consultant) and my male sexual characteristics are tending to shrink (prostate, testicles, yeah I’m enjoying that one, luckily not penis although it’s a bit hard (!) to tell as an erection right now is just a dim and distant memory, and pretty much the use to which one is normally put, too. And loss of some of my more gorilla-like hairs.

Almost hourly hot flushes keep reminding me what it’s like to be menopausal, my hormones are all over the shop, and I’m crying at the stupidest things. Actually, everything.

After the radiotherapy finishes I shall almost immediately be subject to the joys of a “brachytherapy boost”, which is essentially Novichok up the arse to scare off the cancer.

Ok it’s actually iridium they put up there, and via my perineum, hurrah. I will be admitted and prepped, then in the morning they will insert several flexible tubes into my prostate, guided by MRI scanner, while I am deeply unconscious (I fucking hope). Then they catheterise me, and wake me up. With a bunch of tubes sticking out of a hole between my arsehole and ballsack. Sounds like fun, right? Don’t worry, I’ll share some selfies.

Then my team of highly-paid consultants will attach the tubes to a Machine That Goes Ping, and basically go and have a cup of coffee while said machine pushes tiny pieces of highly radioactive iridium 192 isotope a precise depth into each of the tubes for a precisely controlled duration. 20 minutes later the coffee is drunk and the machine finished, whereupon they yank out the tubes and catheter and crack open the Prosecco.

I get to recover til lunchtime ish next day and can drive myself home. Possibly sitting on a pile cushion.

That little procedure is apparently the equivalent of 4 more weeks of radiotherapy so, unpleasant as it sounds, it’s better than the alternative.

The worst side-effect is apparently a constant desire to pee, which will be unrelieved by peeing. For about THREE WEEKS for fuck’s sake. So in the words of one or other consultant, “don’t make any plans for September”.

Broken thumb

(with micro-surgery re-attached ligament) is healing nicely. Disappointed to note that titanium insert doesn’t trigger airport security.

Broken jaw

healing less well but in the words of numerous maxillofacial and orthodontic consultants, there is “fuck-all” they can do about it so I have to grin and bear it. It’s getting better but still “snaps” a lot which causes clicks audible to bystanders as well as searing pain to me.

Cats

are all doing well thank you except for Jasmine whom I’ve not seen since I got back to the flat on Tuesday evening. She will probably turn up. Gizmo is turning into a very loving boy, he is lately being way more affectionate than he has been over the last 9 months since I took him on. All others much the same.

Er

Anything else?

Oh yes. ADHD.

I started a six week group therapy thing but three unrelated crises arose in weeks 3, 4 and 5, so I threw in the towel. More useful are the drugs, which help me focus.

The more I learn about ADHD the more it explains so many things. Very glad I got the diagnosis.

And Life in General

is good. I’m getting happier. Changes are afoot, of a few varieties including the moving-house variety, possibly as early as end of September, and I’m really, really looking forward to moving. With zero irony. Seriously, I can’t wait to leave New Malden, and my heart is already in my next location.

Thanks, as ever, for reading.

Her Maj’s Gov’t: credit where it’s due

I love it when “wouldn’t it be great if…” actually works.

I missed the deadline for sending a “fitness for work” note to HMG to substantiate my claim of temporary crippledom. I just phoned them, and they said No problem, just send them in as soon as you can.

Then I did something I do reasonably often, even though it’s almost always an exercise in futility.

I asked whether there was any way I could do it electronically. I’d barely spoken than I burst out laughing as it dawned what a stupid question it was, because of course there wasn’t a way, there never is, and this was just another fruitless gesture of hope that’s going to end up in rolled eyes and tuts all round.

Sensing my scepticism, he said Actually there might be something. Try googling “send your fit note”, it should be the top result.

And bugger me, there it was: https://fitnote.itsbeta.net

No logging in.

You just upload a photo of your “fit note” and it checks it over.

I was rather hoping it was going to just suck it up without asking for any details, because after all, they are all there on the sick note, but it disappointed by asking for my NI number, house number and postcode, and asked if I’d like to be sent an SMS on receipt.

And that’s it.

But as if the bizarrely pain-free upload process wasn’t enough, there was more. The chap was able to access the uploaded notes immediately and push my claim forwards. Just unbelievably efficient.

Colour me impressed.

End of a (brief) era

And so the radiotherapy era draws gently to a close.

This morning has been the worst sickness so far… I woke up feeling sick in the middle of the night so I had some toast and immediately felt better, but I met the toast again on its way out this morning at about 7:30. It tasted better on the way in.

I also came the closest yet to vomiting on the train, and tube. In fact even as I sit here at Vauxhall in my spot, waiting, I feel like if it gets much worse I shall have to get my vom-bag out just in case.

So I’ve bought my final bag of fruit from the chatty fruit man, and told him I might be back in a few weeks.

And I bought a posh and very expensive box of Tipsy Truffles from Hotel Chocolat for the zapping team.

I also made them a card, ‘from’ the cats of course, thanking everyone for helping to fix their human. They loved it, and fortunately my misgivings about hugging the staff were allayed when they volunteered same without me having to even think about it. We chatted for a bit, on such things as the correct quantity of cats to have, Pocahontas, whether boy or girl children are more of a pain in the arse, and the lamentable state of global politics. I wanted to hang around and talk for ages but these people apparently have work to do.

I was kind of sad to leave.

Here’s the card, just for giggles.

Card

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And the final haiku, with a nod to Dylan Thomas.

So farewell then, you
Ugly, lovely hospital
Maybe see you soon

When I get home I’m going to pamper my cats for a bit, then drive down to Canterbury to see my lovely mum and sister, and get very, very drunk on champagne.

Penultimate Haikus

Tomorrow is my last day of radiotherapy!

Everyone in the basement at UCLH has been wonderful, and I know that tomorrow I’m going to want to hug everyone but I won’t because of a combination of embarrassment and fear of being arrested for indecent assault… you really have to watch yourself these days. I don’t want another one on my record.

Anyway. Here are Haiku to bring us up to date.

Day 22: Wednesday 28th March

Let me through! I am
Carrying a vomit bag
With luck, redundant

Day 23: Thursday 29th March

Same trip every day
Smell the roses; don’t forget
Tails will wag at you

Day 24: Monday 2nd April

Final week begins
Unsure of my feelings now
Anticipation

Day 25: Tuesday 3rd April

Station caff coffee
Asked for black, got a latte
You had just one job

Day 26: Wednesday 4th April

A “doctor review”
Sickness improved; she is pleased
Domperidone rocks

Day 27: Thursday 5th April

Almost every day
I buy fruit at Vauxhall stall
Going to miss it lots

Big long update

Apologies for Haiku rudeness

I hope the bulk of my massive readership wasn’t too offended by my last Haiku, which may have given the impression that I am not especially sensitive to the issues of homelessness. Not so, in fact quite the opposite; it was a biting satire aimed at the type of person who really does think like that, and they are sadly legion.

Big Vom

Radiotherapy continues. It’s making me feel proper sick now, most mornings, and I’ve actually been sick several times, including at 5:30 Sunday morning, and again this morning. I’ve not eaten anything at that time so the vomit is basically just the saliva my system has been putting there for the previous five minutes via the medium of pre-puke hypersalivation (PPH, probably). But even so, it’s very far from pleasant.

I just spoke with a Dr Ollie, who is part of the NHS sarcoma team here at UCLH. He decided after we chatted about the sickness, that he would ask Dr Seddon if he can prescribe some kinetic antiemetics(?), which work in a different way to the ones I’m taking already, and can be taken in conjunction. He is concerned that the vomit effects are going to get worse over the next few days and hopefully with a two-pronged antiemetic approach, it may be less bad.

Ladies with morning sickness: I have a newfound empathy.

Prostate Possibilities

I spoke to my prostate surgeon a couple of days ago. He said that from what he can tell from what I’ve had done so far, we might be better off reverting to the strategy of… wait for it… radiotherapy, rather than removal.

I’m not sure how I feel about this, partly because he spent a long time at the start persuading me that excision was a much more sensible route then radiotherapy. Now he’s changed his mind, on the basis that my insides might be so messed up from the previous operation that he can’t safely enough perform the surgery.

He is scheduling an MRI for me, and we will take a decision after he’s had a chance to evaluate it and discuss with his multidisciplinary team.

Other Photonees

I also saw the poor chap who has the brain tumour, along with his husband. I’ll call them Adrian and Graham.

It’s really strange how quickly you become emotionally attached to complete strangers in circumstances like this. I’ve met Adrian and his mother Pam maybe half a dozen times, and Graham the husband just about three times, yet we have talked about such deeply personal things, exchanged email addresses, and given each other massive hugs when we parted today. They are heading back home as this was Adrian’s last session. His prognosis is not good; he perhaps has a year, although he is trying to think more positively than that. Graham is a psychiatrist though, so is painfully aware of the reality.

Sunday Trains

On Sunday the gods decided to toy with me once more, by laying on a rail replacement bus service. I swore loudly at the posters outside the station, hurried back to my just-parked car, and fired up my JustPark app to see if I could find a space near Warren Street, which I did, for a tenner, booked it, and set off. I ended up just 8 minutes late, which is pretty amazing given the circumstances. If I’d opted to take the rail replacement buses I’d probably have got about as far as Wimbledon by now.

But, Sunday? Well yes, apparently because next weekend is Easter, to avoid having to pay staff the mega overtime rates of a Good Friday, they do Sunday to Thursday instead, as the Sunday whilst still overtime rates is apparently cheaper.

Waiting Room Emissions

Why is it the first time you ever fart in the waiting room, the superhot lead of the zapper team, who I can only pray is never going to read this, walks in precisely 10 seconds afterwards to get a glass of water, leaning right into the fresh aroma-cloud as she takes her drink and smiles knowingly as she walks out?

Haiku Update

Here’s a batch load of Haiku from the last few days.

Day 16: Wednesday 21st

Post-photonic vibe
Working in a nearby pub
Coffees for nursing

Day 17: Thursday 22nd

New Malden, Vauxhall,
Tube to Warren Street, basement
Waiting room, zap, home

Day 18: Friday 23rd

Next Friday is Good
Staff are paid less on Sundays
Church of God’s photons

Day 19: Sunday 25th

No trains this morning
Treacle buses run instead
Driving is quicker

Day 20: Monday 26th

Sick at 5:30
Feel like crap again today
Are we nearly there?

I’m sorry, what, LUL?

The slogan on our tube system which is announced at the end of several similar style adverts is so unbelievably rubbish. The ads go something like this: “If you see an unattended package or anything suspicious, tell a member of staff or text us on XYZ and we’ll get it removed. See it. Say it. Sorted!”

I can imagine the meeting at which that was finalised.

“So, team, what have you got for us?”

“How about ‘See it. Say it. Sorted!’?”

“Really? That’s crap. Is there anything else?”

“Actually, no.”

“Ah fuck, it’ll have to do then.”

Day 21: Tuesday 27th

Stupidest slogan
Is “See it. Say it. Sorted!”
Who came up with that?

It’s Monday, with a vengeance

The  Half Marathon that Wasn’t

Yesterday (Sunday) was supposed to be the Reading Half Marathon but the pussies who organise it thought it was better off cancelled, because cold and snow. It’s not even postponed… They’ve given us a £40 voucher towards another race from the same organisers.

So since Tracy and I were prepared and raring to go, we decided to go and do our own “independent half marathon”, and drove to Richmond Park, where we planned to do two laps. This turned out to be somewhat ambitious, for me, anyway: conditions underfoot were icy, and the wind made it extremely unpleasant about half of the time, plus my vascular system, which does not allow me to climb more than three stairs at the moment without getting seriously out of breath, did not enjoy any of the hills.

In the end, we made one slightly extended lap, stopping twice for hot drinks and a rest.

It took us about 4 hours (3h15m if you take the stops into account) to do 8 miles, and I was absolutely shattered.

Thank you Tracy for all your help, friendship and encouragement 😊

Running pics:

Stats:

Large red man:

Tracy, blossom and snow:

Acrobatic jackdaw at Pembroke Lodge:

Confused daffodils, and some purple things:

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Venous Update

This morning I saw the lovely Ben, my vascular surgeon, who I’ve not seen since a few days after my major op (Nov 19th).

He’s pleased with my progress, and I was able to leave with the following fresh nuggets:

  1. Turns out the stockings, whose actual function I’ve been pondering for a while, are dual purpose: firstly they reduce dramatically the chances of a deep vein thrombosis (DVT), which would not be especially good news, and secondly they are to stop my legs from swelling up due to poor circulation due to the missing IVC. I said that for more or less the last three months they’ve been fine, no swelling, even when I didn’t wear them for three weeks. He was surprised, but in a good way. From now on I can either wear them or not; I just need to remember to look out for any swelling of my legs, and put them on again if I detect any.
  2. I won’t be getting a pulmonary embolism, because any clots that may form in my legs (including ones that don’t lead to a DVT) are too physically large to fit up the auxiiliary veins that have sprung up to do the Vena Cava’s old job. But this could have been a big problem if I still had my IVC.
  3. The quickness to get out of breath is expected to improve dramtically over the next few months, until I’m effectively ‘normal’.
  4. Mr Shankar my sarcoma surgeon has had a stroke and is out of action! I must contact him and send best wishes.

Ben also made me this drawing, while he was explaining various things. I rather like consultants’ drawings.

Show me the drawing

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Shut Up and Show Me the Haiku

Day #12: 2018-03-15 Thursday

During preparation for each sesssion, they line up crosses made by very thin and precise green laser beams (I’m thinking tightly-collimated 532nm DPSS, fellow laser nerds), with three tiny dots tattooed on my sides and tummy, so they know I’m in exactly the same place every time.

Tasha and Kelly's
Lasers spot my tattoo’d dots
Photon me, baby!
Day 13: 2018-03-16 Friday

I never fail to be struck by what a hive of activity the hospital is, always bustling inside and out. As well as by how many people hang around outside hospitals (usually next to the NO SMOKING signs) smoking.

Porters push patients
Groups of smokers out the front
Hospital’s alive
Day 14: 2018-03-19 Monday (today)

Today I was 90 minutes early, having come from my vascular appointment, and was intending to do some work while I waited, but Tasha was able to get me in more or less immediately.

So early today
No big deal, I'm slotted in
Fix me, magic beams

Reading Half Marathon — cancelled 😡

I’ve been checking my email every few minutes since 7:00 this morning, on the lookout for status messages from the Reading Half Marathon organisers, and just now came the one Tracy and I have been dreading: it’s been bloody cancelled, due to too much snows & too few Celsiuses. This is especially disappointing as we’ve already done the worst part of it (getting out of bed*).

So we are going to walk one anyway, on our own, so In Your Face, Reading.

Will post some Bruce & Tracy’s Independent Half Marathon pics later.

And I owe two haiku, I know. Don’t worry.

* Separate beds

Radiotherapy Haiku #11

Quick video of Gizmo giving me a minor clawing, which I richly deserved. He is uncharacteristically silent here… we were going easy on each other.

Next is a pic of a poster telling all about reflexology, some of which I had again today, and the different zones on the foot and their connection to the other parts of the body. When she showed me it today I asked Alice, my lovely reflexologist, how much science there is behind it all, and, you know, whether there is any kind of physical connection between the bit at the bottom of your big toe and your “throat and vocal chords”, for example, and she said “it’s more of an energy connection”. Ok, so no science then, I didn’t say, because I was brought up to believe that it’s not polite to rubbish someone’s physiological belief system, and in fact entire career, when you’ve only known them for a couple of hours. Anyway I care not whether there’s science behind it, it feels bloody amazing, and if I could employ Alice to attend to my feet for an hour every morning, I would.

Next, a lovely steamy alley, for no particular reason other than that it photographed quite nicely, I think.

And finally… today’s haiku.

Take me to my floor
Thyssenkrupp Elevator
24 Persons