Another story

Nurses are Angels, we all know that. They have the hardest of jobs and I often think that those working in a cancer centre have one of the hardest, emotionally. It must be all-too easy for them to get personally involved, yet they don’t get to see the results of their efforts: who survives and who doesn’t. It is in the power of nurses to influence the patient’s experience of receiving treatment; even the slightest of gestures can make all the difference; a smile, a comforting touch, or just some of their hard-earned time to reassure and show empathy.

Such was the case when I arrived for what turned out to be my abortive 5th chemo cycle. My nurse sat down next to me and went through the usual list of pre-chemo questions but not in a casual ‘I do this dozens of times a day’ manner. She was professional and caring, looked me directly in the eye and clearly took note of my answers. She made me feel like an individual. So attentive, however, that the result was a postponement of my chemo, after advice from a more senior nurse. We agreed a rescheduled date and she even asked a nurse who would be working on that date to examine my eye to compare it when I returned for the chemo.

My return visit was quite different, mainly due to the different, I hesitate to say indifferent, nurse. It was the one who had been asked to check and compare my eye. Maybe she blamed me for wasting the chemo drugs the previous week, as she made a point of reminding me many times and for which I was already feeling guilty. Maybe she was just having a bad day. Maybe it’s me. You could have cut the atmosphere with a blunt scalpel as she, very efficiently but silently, attached the canula, tubes and drugs bag. It was the first time I’ve felt so awkward during all my treatments. It’s a shame as I could do without the added stress and also a shame that I didn’t get the chance to try and remedy the situation but our time together was cut short as she swapped with another nurse, who effortlessly restored the familiar, friendly atmosphere.

What a difference a nurse makes. Yes, they are all Angels; they make us proud and yet, in the words of the late Michael Hutchence of INXS – Never Tear Us Apart:

‘I told you/That we could fly/’Cause we all have wings/But some of us don’t know why.’

Happy 70th Birthday NHS. I don’t know what we’d do without you.

 

Fun and games with chemo No5

Between all this June activity, my 5th chemo was postponed. It’s fine filling up the days in between treatments with fun stuff but it’s the chemotherapy that could extend my life in order to have, hopefully, lots more fun stuff.

I’d been to see my GP as I had a cyst under my eyelid. He gave me some antibiotic gel and said it wouldn’t affect any of my other medication. Over a week, the cyst disappeared and all seemed well. However, the day before my fifth chemo a small cyst appeared again. I used the gel and it seemed to help, yet when I presented myself at the cancer centre there was a lot of discussion and a final decision that the chemo would need to be postponed to avoid any possibility of worsening the infection. I tried to dissuade the nurses as I was feeling guilty about the cost of wasted chemo drugs but they put my health first and made the point that it would cost more if my infection worsened and then had to be treated.

The lesson here is to contact the cancer centre nurses immediately for advice if there is any possibility of an infection developing during chemotherapy.

The good news though is that my PSA level is still 60, my eye cleared up and I had my chemo the following week – but that’s another story.

June 7: a posh play

Anne’s cousin is in a play in Stratford-upon-Avon. She’s playing the lead role in ‘The Fantastic Follies of Mrs. Rich’ in a Royal Shakespeare Company production, no less. An opportunity not to be missed, so off we trotted ( I say ‘trotted’, more of a taxi to the station and a train to Stratford – trotting remains beyond my ‘scaffolded’ legs). We’d booked a hotel for a couple of nights in order to make the most of the break, checked-in, had a couple of wobbly-pops and were in our seats ready for the performance before you could say ”What’s it about?”.

It’s a Restoration comedy, very wordy but witty, funny and absorbing. The characters draw you into their world of snobbery and social mobility, or lack of it. We loved it. We also loved the two huge wolfhounds who stole the show whenever they leapt on stage.

The next day was our tourist day. We visited Shakespeare’s grave (he’s still dead), had an enormous cream tea, a few more wobbly pops, a relaxing stroll along the river and a delicious Italian meal.

It was one of those trips where all the little things seemed to go right. The trains were on time (always a bonus); people would unexpectedly move when we wanted to sit down on a park bench or pub table (is it me?); a chance chat with a local led to the discovery of more places of interest; we showed a landlady a pricing error on her menu, so she gave us a free drink; we happened upon some great live music.

Who needs foreign breaks?

June 2: 65th birthday bash

Early June saw Anne and me head off to Cardiff to help celebrate a friend looking much older than his age (surely wrong way round?). To see him and his family again, as well as the promise of a live band made me determined, this time, not to have to cancel the trip back to the land of song. Because my sciatica was still making unannounced yet pronounced appearances, we’d booked to go by train but were then unexpectedly offered a lift by some kind neighbours who were also attending. They took us all the way to our hotel overlooking the Penarth bay (hotel rated ‘posh’ by our neighbours as they dropped us off). We were very grateful for the lift, although I didn’t mention my health ‘issuette’ (I’m still making words up) as he might have driven into the nearest lamppost. It’s never a good time.

There must have been 150 people arranged around the tables in the large party room, with a stage at the far end. I promise I had resolved to rest my back and legs by sitting calmly at our table, drinking beer and chatting to anyone who’d listen.

So much for that resolution: the live band shouldn’t have played ‘Sweet Soul Music’, followed by a roll-call of outstanding soul staples, capping it all by playing the Stone’s ‘Satisfaction’. Who could resist? Anne and I spent most of the evening on the dancefloor. The days of cartwheels and somersaults are long gone (when were they ever here?) but we can still swing energetically from side-to-side whilst moving our feet rhythmically to a beat……maybe you had to be there.

A week after coming home and my bones still ached but there’s no point in going to a party and not enjoying yourself is there?

June is bustin’ out all over

I’ve said before that it’s the little things each day and the small future rewards that keep me feeling better and positive for the future. Sometimes, lots of these events conspire to arrive at once, like a flock of beautiful white swans flying in a Red Arrows’ diamond formation before swooping over the trees and down to a long expanse of water, landing in sequence, undercarriages down, to the orchestral strains of Tchaikovsky’s Swan Lake (too much?). This June is such a time, with fun and exciting occasions queuing up to be enjoyed, and enjoy them we shall. Small things build into bigger things.

My Macmillan cancer blog post

I’m not sure what many cancer sufferers would do without the care and support provided by Macmillan Cancer Support. Luckily I’ve not needed any in-depth care yet as I have my family and friends around me. However, many of the specialist nurses who treat me and others in the cancer centre are provided by Macmillan and I know I’ll be making more use of their services in the future.

Their website provides a mine of information as well as an online community forum where people with or without cancer can chat with each other and learn from their experiences.

Hopefully that will be the case with my blog post, which has just been published on the site at:

https://community.macmillan.org.uk/blogs/b/community_news/archive/2018/06/20/guest-post-my-metastatic-prostate-cancer-aka-the-alien-inside

Have a look and explore the site if cancer has affected you, someone you know; or if you’re just interested. It’s certainly helped me and I hope my post helps others.

Many thanks to Jaz, Online Community Officer at Macmillan, who helped me get the post published.

Next day – new oncologist

The following day my glamorous assistants and I made our way to another hospital to see another doctor. This time it was the first appointment with my latest oncologist. There was no particular reason to meet at this time; it was just that I was feeling a little ‘unloved’ as I’d not seen an oncologist since the beginning of my new chemo treatment. During this treatment my PSA level had continued to rise and I’d complained when my appointment was postponed for two more weeks, hence this meeting. As it happens it was a bit of a non-event as my PSA had reduced from 62 to 60 by the time we met and so, as he said to me, it was not the meeting it might have been. In fact it was all very light-hearted once we’d sized each other up. Yet he made a point of telling me that some men have PSA counts over 2,000 which, seeing as my relatively low score has resulted in a terminal condition with large chunks of bone mass missing from my pelvis and legs, was not particularly reassuring. We seemed to get on well enough; however, having asked if I had any questions and seeing me produce my list, he didn’t actually answer them fully, preferring to stealthily park them for now, maybe until he has more information. Early days.

Goodbye to my bone doctor

It’s been a year since the operation on my legs, so time to go see the bone doctor again for a check-up and ensure the ‘scaffolding’ is still holding me up: I knew the answer as I hadn’t been falling over. The orthopaedic surgeon scanned the x-rays while we (me, Anne and Victoria: Charlotte was earning her crust in the real world) looked on.

When he turned round to us he had that questioning look on his face as if to say ‘how much do you know about what’s wrong with you?’ I told him how much I knew, basically everything, which seemed to put him at ease. He was happy to talk about my legs, my cancer and my progress, which is good apart from a touch of arthritis in my hips. This, relative to everything else that’s going on, is not the troubling revelation it might once have been. He signed me off and the good news is that I don’t need any more orthopaedic check-ups.

What brought me back to earth was seeing the amount of tumours on the x-rays. I’d almost forgotten about the lack of bone mass in my pelvis and femurs but seeing the large areas of grey shading, signifying the extent of the metastasis (tumours), reminded me of the seriousness of my condition and where the pain is coming from. The good news is that the tumours are sclerotic, as hard if not harder than my original bones.

I recalled the conversation I had with the consultant surgeon immediately after my operation. He told me the reason it had taken 4 hours instead of the estimated 40 minutes was because he’d had to drill through some of these sclerotic metastases, which were like granite. In jest, or maybe not, he said he’d almost given up until he noticed the red button on the top of his drill. He pressed this and, as if by magic, it started to power through my tumours.

His final comment, “I always wondered what that button was for.”

It’s not contagious

Many people know someone who has, or has had, cancer. We all hope that the marvellous medical advances being developed will continue to reduce the incidence of this dreadful disease. I understand there are more than 200 different types of cancer (as I’ve said previously, I have no medical knowledge). Thankfully, due to this research, many more people are now cured. Days were, when dealing with a prevalent disease meant finding a cure for a particular virus, bug or infection. Cancer seems not so simple, as if it has a brain of its own. It can develop in so many forms and mutate to defend itself. I sometimes wonder if it’s my own brain paradoxically enabling this to happen; that the ‘alien inside’ is actually taking instruction from some subconscious dark web within my head. Whether or not that’s the case, I believe that working mentally to help restrict and fight the cancer is an imperative part of the overall treatment. Some people call it a Positive Mental Attitude; I call it ‘what else would I do?’

Every day is valuable and the way we approach each day is also valuable; my attitude is to get something out of each day, whatever it is. It could be as mundane as a quick chat to a neighbour or as satisfying as booking a short break or longer holiday – an occasion to look forward to. It’s simply something that makes me feel better, whether large or small. It’s usually just a small act but things build on things to become bigger things and positively affect my outlook.

Two friends, close and dear to me, have this same mental attitude. Since my own diagnosis each has also been given the same devastating news; one with breast cancer, identified over a year ago, around the same time as me, and the other much more recently, with a squamous lump in his neck which turned out to be cancerous.

I’m delighted to say that, in the first case, the invasive treatment is over and the prognosis is extremely positive.

My other close friend, and best man at my wedding, is currently undergoing chemotherapy and radiotherapy treatment. The good news is that his condition is curable as well, it hasn’t spread and 9 out of 10 people recover with no recurrence.

Stay positive, people and build on those little things every day.

16th May – Prostate Cancer Day: who knew?

Did you know? No, neither did I. Hadn’t seen any publicity so maybe it was more of a local thing but it’s a shame as it’s a cause I’ve kinda taken to my heart (3 guesses why). It was only when Anne and I wandered into her building society to deposit a cheque; yes, we were actually putting some money in, saw a poster and entered the draw for a bottle of champagne.

We only went and won. OK so not the biggest participation in the world as our tickets were numbered 46 to 55 but it’s ironic that the prize was won by someone who actually has prostate cancer. Anne was pleased to explain this to the teller when collecting the prize. However, he wasn’t quite sure how to react to the news (he hadn’t been on that course yet) so did the sympathetic tilting head thing – he didn’t know I’d banned it.