Wednesday, 30 March 2011


I've cried a lot - every day.  Mostly when I'm alone and I think about the future.  With Helen I can usually talk calmly about what may happen, and when I can't she's there for me.

H has cried much less, but when she does it takes her longer to recover.  She accepts that she will lose her old age, but struggles with the thought of leaving her children to grow up without her.

Looking for wedding music, we listened to Fields of Gold sung by Eva Cassidy.  That set us both of.  We're having it anyway, crying at weddings is allowed.  I looked her up: she died at 33 of melanoma.

Sunday, 27 March 2011

H's mother

H's mum J came down from the north-east the Sunday after the diagnosis - her friends very kindly drove her here - and will stay with us till after the wedding.  She's always welcome to stay on account of spending her days looking for domestic chores to do.

Away from her familiar surroundings her memory is fading.  She seems to have forgotten what brought her here. A few days ago she spoke to a nephew on the phone and told us afterwards that she'd just been talking to his brother, who died a few years ago.  Perhaps this is not such a bad thing.

J is the most unadventurous person I've ever met - not at all like H.  On Friday I tried to persuade her to come with us to see S's end-of-term assembly, but she wouldn't because she couldn't possibly get ready in time.  This was over an hour before we were due to leave.  But she perked up yesterday and joined a trip to the shoe shop - there is one interest she shares with H.

Saturday, 19 March 2011

Radiotherapy so far

H has had three days of radiotherapy, with no side effects so far apart from being very tired on Thursday.  Two days off now - cancer doesn't work weekends.

Thursday, 17 March 2011

The second biopsy - 4th March

S came back to us the day after the first biopsy to say that the tissue was necrotic and they'd have to do another biopsy.  Dead cancer sounded good to me, but H told me it would be because the tumour had grown so fast it was unable to maintain blood supply to its interior.  That's less good.

I took I&S with me to collect H afterwards.  We told them mummy is having tests on her bad back.  They were untroubled by the experience.

This time they biopsied the T8 tumour.  That meant they had to leach the bone out of it over the weekend.  On the Monday afternoon, we got a preliminary diagnosis of angiosarcoma, with the news that a sample had been sent to the expert at the Royal Marsden for a second opinion.  H worked with him there early in her career, so she called him to say that the sample was hers.  He called back (he's an important guy, his secretary places his calls for him) on the Friday to confirm the diagnosis.


For the first few days, H's colleague S was handling her case.  He sat down with us to discuss it.  His summary - I quote the technical language verbatim - was "this is shit".  Then he told us all the optimistic things he would say if the patient were not an expert.

Once we had the diagnosis of angiosarcoma, the sarcoma specialist took over.  She declined to give a prognosis, saying that it's a very rare condition and every case is different.

However, it's not hard to find statistics on-line.  Somehow I don't want to reproduce them here.

If H's cancer responds to chemotherapy, the statistics get better.  Paclitaxel may be the first thing to try.

Wedding Dress

When H tried on a dress for her wedding, the shop assistant complimented her on how much better it looked on her than on the dummy.  H laughed it off - "That's because the dummy is bald and pasty".  Then she thought about chemotherapy.

However, chemo won't start until after the wedding, and the side effects may not be that bad.  H will be gorgeous either way.

How rare is this?

According to medscape , your chances of getting any sort of sarcoma in the USA are about 3.1 in 100,000 each year.  Out of the soft-tissue sarcomas analysed, 4.1% were angiosarcomas.  So a bit more than 1 in a million people in the USA will be diagnosed with soft-tissue angiosarcoma each year.  I suppose the UK is similar.

Furthermore, H is twenty years younger than the median age for this diagnosis, she has no risk factors we know of, and her T8 tumour is an unusual site (but we don't know what the primary is).

Wednesday, 16 March 2011


We've been engaged for seven years without ever getting close to organizing a wedding.  But we decided to do it within two days of getting the news.  To start with it was going to be just the two of us plus witnesses: now it's expanded to a party for friends and family.  I am proud and happy.


H had her first radiotherapy session today, with no immediate problems.  The radiologist decided to treat her T12 tumour as well after all.  The radiotherapy was followed by a CT scan to her brain, to check for any metastases there (though brain mets are uncommon with angiosarcoma).  I'm a bit surprised that they're willing to irradiate her brain like that, but H tells me that it's a trivial concern by comparison.

Tuesday, 15 March 2011


When I told a deeply religious friend about it, I told her God had lost the plot on this one.  I can do that, I don't believe in Her anyway.  But my friend agreed, and she says it's ok to think that, God will understand.

I took H's mum to get her hair done in a nearby village.  While that was going on, I went for a walk, and was attracted by a footpath signposted for the village church.  I tend to follow the finger of fate on these things, so there I went.  It was locked.

Adrenaline - 2nd-4th March

For two days after getting the news I had no appetite for anything - I ate some dinner with the family and nothing else.  H didn't eat much either.

On the 5th I felt more normal.  That might be because I'd been telling people about the news, accepting the fact of it.  Or it might just be time passing.


Two scans today.  This morning was PET - positron emission tomography.  Great technology - they inject  fluorodeoxyglucose labelled with (short half-life) positron-emitting fluorine, and detect the matching pairs of gamma rays emitted when the positrons annihilate.  So they get an image of where blood sugar is being taken up - and cancers use a lot of it.

H's scan showed the T8 tumour as the most active.  And it found two small spots we didn't know about, one on a cervical vertebra and one on a rib.  H tells me this is a good result, since it might have shown many more growths.

This afternoon was a heart MRI.  Unexpectedly, I was allowed into the scanner room, having carefully emptied my pockets of anything metallic, and taken off my belt.  It's like medicine in a science fiction film.  It took an hour, so they must know a lot about her heart now.  The point of the scan is that the primary could be in her heart, in which case it can't be doing much yet but they ought to know about it if they're going to operate on her at some time.  No results yet, H may use her medical privileges to take a peek tomorrow.

Diagnosis and treatment plan - 10th March

It's angiosarcoma - something I'd never heard of before this week - a cancer of cells lining blood vessel walls.  It's a rare cancer, and the way it's presented in H, with tumours in the muscles of her back and abdomen, is almost unknown.  But the histopathologist here thinks that's what it is, and the expert in London, whom H knows personally, agrees.  As well as the three muscle tumours there are two smallish growths in her lungs.  And she has two cysts on her scalp, one of which seems to be growing and is probably the cancer too.

We went to the hospital today to discuss treatment with the doctors.  Something needs to be done quickly about the main tumour because it's close to her spinal cord.  We wanted to get it cut out, but the doctors say that's not best because it will be impossible to take out whole and cutting into it risks post-operative bleeding which could itself damage the spinal cord.  The neurosurgeon talked us through the operation he could do to remove a vertebra and replace it with a metal cage, including some scans of someone he'd successfully done it to.  This involves going in through the chest to reach the front of the vertebra, then through the to do the rest.  We had no trouble agreeing that this seemed altogether too heroic for what would be a non-curative operation.

Instead H will have radiotherapy - a sophisticated version called 'tomotherapy'.  The radiologist wanted to irradiate her T12 tumour as well as the T8 tumour, but H said no, it would be better to keep it for monitoring the effectiveness of chemotherapy.  I was surprised how readily the radiologist changed her mind.  It takes some time to set up the tomotherapy, so it will start on Wednesday 16th.

Both the sarcoma specialist who's now in charge of the case and the neurosurgeon had H take off her trousers so they could test her leg strength and reflexes.  She is thinking of buying bigger pants.  But they probably suspected already that she's a natural redhead.


I was planning to write this as a well-ordered account, but I'm not keeping up.  So I'll mix up past (with dates in the title) and present, as they come.

Saturday, 12 March 2011

3rd March - H's mum

It's H's mother's birthday.  H has to phone her, but she can't talk to her without giving her the news.  It will be hard on her: she lost H's father to a heart attack when H was a teenager, and in the last few years the rest of her family has died.

H's mum has a friend living nearby who turns out not to be ex-directory.  I phone her, explain the situation, and ask her to go round: she kindly agrees.  Then I phone H's mum and give her the news.

Later, H calls her mum and has a long conversation.  I call my younger sister, who is hosting a party for my mother on Sunday.  She offers to tell my brother and older sister.  I call my father.  We agree not to tell my mother, whose memory is fading: she won't remember who H is.

Friday, 11 March 2011

3rd March - Biopsy

I send an email to work telling them I'll be at home with my sick wife.  Then I get I&S ready (I always gets himself up, S will stay in bed for as long as she can) and take them to school - I mean to do more of the things I usually leave to H.  Later we go to the hospital for a biopsy.  We go into the oncology department through a staff entrance, but H comes to reception as a patient.

H is to have another scan before her biopsy.  She's given a contrast solution to drink.  When she goes for a refill at the desk one of her patients sees her and they chat.  Meanwhile, I notice a man sitting on a motorized buggy next to the waiting area - it's too big to drive in.  He's wearing a Silk Cut shell suit.  I point this out to H when she sits down again, and we smile at his remarkable choice.  Later, while H has gone for a chat with her colleagues, a nurse approaches Silk Cut and asks him to follow her.  His buggy is too big, so he stands up, slowly, leaning heavily on his stick, and starts to shake.  She persuades him to sit down and goes for a standard wheelchair.

H comes back from her scan and biopsy.  The scan has revealed a third tumour in her abdomen.  They've chosen to biopsy that one, since they'll be no bone in it so they can look at it at once without having to leach out the bone first.

H has looked at the new scan.  She thinks it's melanoma.

2nd March - What the scan showed

On the train home I met a long-time fellow commuter, who retired last year.  We exchange pleasantries.  I'm about to tell him why I'm on the train, but he interrupts me with something else.  Good.

I wasn't needed to pick up the younger children - H brought them home: they were pleased to see me so early.  I made the dinner, which neither of us had much appetite for.

H told me about the scan.  It shows a lytic tumour on the right side involving the eighth thoracic vertebra (T8) and the rib, and another in the muscle lower down on the left side, close to T12 - this is the one causing the muscle swelling.  It's impossible to tell what sort of cancer it is, or where the primary is.  The best case would be lymphoma, but that's very unlikely.  What H fears is melanoma - she's very fair-skinned - which would be quickly fatal with a strong possibility of brain metastases.

There's a biopsy booked for tomorrow, Thursday.  The tissue will go the the histopathologists, whose job it is to work out what the cancer is.

Side pain

H has a five-year history of neuropathic pain in her right side, around the bottom floating rib, which is slightly displaced.  When it started she had an MRI scan which showed nothing wrong.

She's found it's alleviated by rowing - she rowed as a lightweight for Oxford, and has taken it up again in the last few years.  It's aggravated by running - she ran the London marathon this year.

In November, it started getting worse and more widespread.  In December she saw a rheumatologist and they agreed she should have physiotherapy.  When it got worse again, she arranged a scan to check for joint damage, booked for Tuesday 1st March.  By this time there was a detectable prominence of a back muscle on her left side, which she attributed muscle guarding.  We went away skiing with the family and friends for half-term.  H missed a couple of days when it was snowing - she gets snow-sick - but otherwise skied much better than I do, as usual.

Thursday, 10 March 2011

About us

H is a consultant oncologist at a major teaching hospital.  I am a banker, working in London.  We have two children, I (boy, age 8) and S (girl, age 6).  H has three boys from a previous relationship, J (age 17), and twins R and M (age 14), who live with us.