Two Ways to Manage Bladder Cancer

Two strands are emerging in managing bladder cancer. First, Dr Martin, the oncologist, phoned to discuss my decision to go for radiotherapy, re-going over what I had already been told: that I would have an appointment sent through to go back to Addenbrookes for a further bladder scan, and the addition of tattoos to my abdomen to mark the spot for the radiotherapy, which might start a couple of weeks after that. I resisted the temptation to ask, why he hadn't just said that on Monday when I was in the room with him!

He emphasised that my chances of going on holiday after Christmas were small to the point of disappearing, as even if the therapy was completed by then, I might be too tired and weak to go. I also asked him if there were any recent treatments that might improve the odds, but perhaps hadn't been approved for prescribing under the NHS, even if I had to pay for them myself, but disappointedly he said there weren't.

Second, my niece in Coventry sent a parcel from an on-line shop, Live Better with Cancer, that contained special creams to sooth burnt skin, a warming blanket for when I get shivery, and ginger sweets to refresh the taste buds and ease nausea. I first met Sue as a new born, when I took her a gift of a yellow elephant, but generally we only see her and her family when we visit my brother's, for we've never been a very close family. But this gift, totally unexpected and so thoughtful, moved me to tears, to realise how much care went into its choosing from someone I rarely see and hardly know, despite being a close relative.

Now I await radiotherapy: the calm before the storm of radiation hits my body. I continue to work, and it provides a good distraction – it requires intense thought, and I can certainly think of nothing else at those times. The cancer sites are spot on – a good job is great distraction therapy.

Time wasting at Addenbrookes Hospital

Yesterday, Dr Martin the oncologist at WSH, explained the pros and cons of chemotherapy, with sufficient emphasis on the cons that I had no hesitation in declining his kind offer. I told him I would opt for radiotherapy as the definitive treatment. As the oncologist in charge, he arranges the radiotherapy, but rather than doing so he encouraged me to keep the appointment at Addenbrookes to discuss it there.

Addenbrookes is 90 minutes away in heavy Cambridge traffic, so we left at 10:30 for my 12:00 appointment. The carpark was full, so we queued until enough cars had left for us to enter and find a vacant hole. Fortunately, traffic had been light so we arrived on the ward by 11:40, to find the clinics were running and hour late. Finally we were called in to see just the registrar, as Mr Turner was away. He asked if radiotherapy had been explained, and when I said I'd read the leaflet, he said there was nothing he could add to that. I only had two questions: when would it start and finish, and would I be able to go on the holiday we've booked for my birthday and New Year at the end of December. He couldn't answer either of them, and said the radiologist would have to answer these, and he'd write back to Dr Martin to make a new appointment to discuss it all.

The whole thing lasted ten minutes, and was a complete waste of time – I have lost a whole day of my life to be told nothing, and that could have been sorted yesterday. The only good thing was meeting Arthur, a volunteer in the oncology clinic, who found me a leaflet on getting holiday insurance (if we do manage to go!). He also gave me a leaflet about coming to Maggie's, a cancer drop-in centre, and a support group called Fight Bladder Cancer. It contained the line, "we know EXACTLY what you are going through...like most people, panic and fear will be a huge part of what you are experiencing." No, I am not experiencing panic or fear, and have not done so yet. What I AM experiencing is bloody anger and frustration at the lack of joined up thinking between WSH and Addenbrookes.

Radiotherapy already demands that I shall attend Addenbrookes five days a week for four weeks, plus the days round it for checkups and planning. The days left are too few to be wasted like this one  – I am already counting each one as precious, to be treasured. I don't want to spend 4–5 hours for a ten minute talk by a junior doctor to tell me nothing.

Paddy Ashdown joins the Bladder Cancer Brigade

I mentioned in an earlier blog that there is a dearth of famous people with bladder cancer. Now Paddy Ashdown, the ex-leader of the Lib-Dems,  has joined the ranks of the BCB. I extend my sincere sympathies, for it is not an easy group to join, and he will have a rough path to follow. He used to have a nickname, "Paddy Pantsdown", for reasons that might be libelous to state. Now we can reprise the nickname: he will be Paddy Pantsdown anew, as I can state from experience!

The smell of the Bug of Death

I have acquired a noticeable odour, that follows me like a sick fog. I noticed it a while ago, but now Ann has commented on it as well. Ann is a great researcher, so found that there really is a pungent chemical marker in cancer – a polyamide – and dogs can be trained to detect it. I am starting to spray regularly with an aftershave, and even spray rooms I have been in, but it makes me self-conscious. When the children come round, or I go to face-to-face meetings in London, I try not to stand too closely to the others, or breath over them. I am certainly much weaker and more tired now than even a few months ago. This is the smell of death and despair, of darkness and despondency.

Logo of the British Uro-oncology Group

Next week I meet the oncologists to determine the next step in this journey, an assessment of my suitability and fitness for chemotherapy. Dr Martin is a respected oncologist, on the Executive Committee of the British Uro-oncology Group, or BUG. Their logo is like something out of a science fiction horror movie. Clearly some wit with an unsympathetic sense of humour has added legs to the cancerous bladder/prostate image – but only six legs, so it is an insect not a spider – and looks more like an infestation than a treatment option. On reflection, perhaps it is appropriate. After all, bugs are undesirable things, in people or computers, and this disease and its treatments are certainly undesirable – like the very worst of all bugs.

Is cancer odour common? Please add your experience…

Pacifying Pilot

Ann is difficult to buy presents for. She doesn't like chocolates, or expensive jewelry, and likes to pick her own clothes. Especially with the inconsistent sizing between shops, she prefers to try on garments rather than trusting to others or the internet, then having to return them. She isn't even certain about flowers – cut flowers are like having "dead things" in the house and are better in the field – but she is gracious enough when given them, and displays them nicely in a cut-glass vase.

Yesterday was a busy day. It was Edwin's birthday, with Lucy, Matthew, MA and their families coming to see him all afternoon. Ann had a hospital  appointment in the morning for further X-rays to her hands, so we had to tidy up early. I hoovered and took out the old dead flowers, while she started to prepare the food. At the hospital, I waited in the restaurant over a cup of coffee. Back at the car, Ann said, "what's that blood on your face?" I looked in the car mirror to see two huge glowing red globs on my face, and a deep yellow stain across my cheek and in half my beard. I rubbed them off, but the stain wouldn't move - it was as though I'd dyed my beard bright yellow. We finally worked out that they had come off the flowers when I threw them out - they must have brushed my face and stained it.

Pacifying Pilot, the wild guinea pig.

The party went well, though I was still tired, and sat in my chair most of the afternoon. Lucy and Andy have a new baby, now one year old and toddling, so we shut the dogs in the bedroom so they wouldn't knock him over. Little Theo still has his dummy, and likes to play "hunt the dummy", leaving it in as many unexpected places as he can find. Today he decided to share it with the guinea pig! Pilot was not amused when he realized it wasn't food, throwing us a most accusing look, but Theo thought it very funny.