Thursday, 29 July 2010

Nearly half way through


Monday night – read a press pack sent to me by Ovarian Cancer Action. I have offered to write a piece for them and be one of their “voices.” They also send me a DVD for making a power-point presentation.

Unfortunately it was full of lethal statistics telling me that my chances of surviving this cancer about 38 per cent at best. Everyone is lumped into that statistic. Go to bed trembling and sleep badly.

I assume this information is for women who don’t yet have the cancer, but might get it and need to check for symptoms – but it’s not good for people like me where it has already struck. I would probably run screaming out of my own power-point.

My Tuesday trip to Garry for pre-chemo blood test. Clinic same as ever, very smiley hospitable receptionist directing the lost legions towards a desperately crowded corridor.

“Bit of a wait,” she whispers, beaming.

On my way in I see Nurse Eileen chatting to an elderly man. I really like her, she is so efficient but kind and seems genuinely interested in her patients – or are they called clients these days?

We have a chat and she tells me she spends some of her holidays working at Lourdes.

I have been there twice, to write scandalous stories about the place for the Daily Mail. I don’t tell her that.

It has crossed my mind that I might make a genuine pilgrimage myself when all this is over – there are some spectacular ones about, as well as the more demure sites in the UK, such as Holywell in north Wales.

In the clinic I have to join the people standing, including some very ancient looking men, brought up in the long gone age when gentlemen stood up for ladies to sit down.

In my role of nuisance I ask a nurse if we could perhaps have a few more chairs. She says yes, but none appear. Just beyond us is the vast waiting room, full of high backed chairs, at least half empty.

The Malaysian/Spanish phlebotomist has gone, replaced by no less than two English lads, not something you often see. Things move faster.

One lady tells me she is glad the sniggering man has gone as he once brushed his hand against her nipple. One of those things women sometimes experience but can’t report, because they just can’t be sure enough that it wasn’t innocent.

Some of my former colleagues from the nearby prison arrive to see me, but are not sent through so the meeting doesn’t happen. Probably just as well as there would have been nowhere for them to stand. Never mind – at least I get to see a doctor unexpectedly early, pulled out of the queue to see her.

She is a spry Scots lass, very amiable and I feel reassured talking to her. I read in the Ovarian Cancer action about something in the blood tests called CA125, which reads your level of cancer. The normal rate is between 1 and 35. Because I ask, she goes off to find it and tells me mine is now 15. Before my op it was 76. Feel elated! Everything smoothes out suddenly, long to get on the mobile and tell my mother the good news.

The doctor writes down some things I need for my next cycle of treatment; mouth-wash to treat ulcers and a laxative. Bowels are very important, I suppose they always were but until recently I never gave them a moment of thought except briefly when packing to go anywhere outside Europe. But in this new world I have entered they are there bloating and always threatening to turn into pipes of cement.

The drugs given in the first few days after chemo, against sickness and allergic reaction turn your shit to grit which then softens into something like old rabbit pellets.

I also now face a mid-way scan. I hope this won’t clash with my visit to see my mother in Staffordshire. The doctor says they might be able to fit the scan around this. Catch sight of a Gloucester Old Spot taking off from the car park outside the window.

Back in the corridor a woman tells me that she took some of the laxative and didn’t have enough time to get to the loo. She had to change her bed. After hearing that I probably won’t have the nerve to take it, certainly not the whole packet and definitely not at night. I will probably take it about 6am, after designating a whole day free for me to hover by the loo.

A young man in the clinic tells me that some sensitive soul among the doctors has told him his cancer is “a tiger not a kitten.” Remember Proff Gabra’s remark to me, "a Rotweiller not a poodle." Well is a ferocious dog better than a tiger? Do they consciously control their metaphors according to the level of danger? After all, tigers will certainly kill you, while any kind of dog can be subdued and put on a lead.

When I first went to work at the Mail on Sunday they gave me an awful story to do. I had to go off to the north York moors and be tracked through the woods by several Rotweillers. I had to let them catch me, for a photo, and had to wrestle with them wearing an arm pad. I survived it all, albeit with a stiff arm and a suspicion that the editor did not have my best interests at heart.

Also spoke to a lady whose breast cancer has returned, after a brilliant CA125 reading. Hearing this was as bad as reading Ovarian Cancer Action, or statistics on line. The flashing dorsal fin glides into view again, distant but gaining over the surface of this deep hungry ocean where I float so helplessly.

I have this scenario where my cancer comes rushing back and after a bit of thrashing about, that is the end. And another next to it where I hear people say, “Oh, she had cancer five years ago, but she is still with us and going strong.” Jubilation, chinking of glasses.

Which ever it is, everything has changed and I can never swim back to where I was.


  1. Dear Jane
    I am following your blog with interest as I was diagnosed with Stage 3b OvCa in 2006.
    I too find the stats extremely depressing. Whenever there is an article in the newspapers, they always trot them out - thanks very much, I really needed to be reminded that my days are numbered!
    The fact is though that within those stats there are a number of different stories. I don't want to go into them here, as someone might be reading who might not come out of it too well. However, if you look into it - and ask your consultant - you will start to make sense of it.

  2. Check out this 2002 article from The Telegraph about cancer survival rates:

    Cancer survival figures 'outdated and pessimistic' By David Derbyshire, Medical Correspondent Published: 12:01AM BST 11 Oct 2002

    The official cancer survival statistics are "overly pessimistic" and fail to take into account improvements in screening and drugs, according to a report published today.

    If more up-to-date information were used, the 10-year survival rates for all cancers would rise by around seven per cent, the study found.

    Although the conclusions are based on American statistics, the same approach should also show longer life expectancies in Britain.

    Doctors rarely talk about "curing" cancer. Instead, the success of treatment is judged on whether a patient is alive five, 10 and 15 years after diagnosis.

    The statistics for England and Wales show that the five-year survival rate for all cancers in men is 31 per cent, while for women the survival rate is 43 per cent. The figures are similar for Scotland.

    The gender difference is because the survival rate for lung cancer, the most common cancer in men, is far lower than the survival rate for breast cancer, the most common cancer for women.

    However, research published today in The Lancet suggests these figures underestimate the numbers still alive years after cancer treatment.

    In Britain, five-year survival rates are based on patients diagnosed between 1991 and 1993. The 10-year survival rates are even more out of date, with patients diagnosed in the mid to late 1980s.

    This conventional approach, which follows a cohort of patients, does not take into account recent improvements in treatment and screening.

    Dr Hermann Brenner, from the German Centre for Research on Ageing, Heidelberg, said a more up to date approach, called period analysis, was more accurate. Instead of following a cohort of patients for several years after their diagnosis, this method works backwards.

    To find a 10-year period survival rate, researchers pick a recent year, look at the number of people diagnosed with cancer in the previous 10 years and find out how many were alive in that year. By manipulating figures, a reasonably accurate survival rate can be worked out.

    When period analysis was applied to American cancer data, the 10-year survival rate rose seven per cent to 57 per cent and the 15-year rate rose by 11 per cent to 53 per cent.

    "The provision of up-to-date long term survival rates is not merely an academic exercise," said Dr Brenner. "It could help to prevent clinicians and their patients from undue discouragement or depression by outdated and overly pessimistic survival expectations."

    Ruth Yates, a statistician with Cancer Research UK, said the British survival rates were also likely to be too pessimistic. A study funded by the charity is due to publish updated period survival rates next year.

    She said: "We have had massive improvements in survival in the last 15 to 20 years, but they are not reflected in the cohort survival statistics."

  3. Thank you so much for sending that, Bella.
    Very reassuring - glad you feel as I do. That terrible sinking feeling when you see the horrible stats.
    I seem to get tiny bits of good news knocked down shortly after by bad news.
    I had an excellent result from a blood test recently, that CA125 thing, but then I had a message from someone saying she had also had a good result from it, but now her cancer has returned. Not sure how many years later and it's breast cancer. Have you looked at that test at all?

  4. Yes I have them every 3 months - they dominate my life - along with mammos & MR breast scans (I am BRCA1+ which means I have one of the faulty genes that causes genetic breast and ovarian cancers in families).
    The thing about the CA125 test is that it's currently the only real test out there for OvCa (others are being developed as we speak) but it isn't entirely reliable. I can remember many a conversation about it on the chemo wards - some womens' rose to colossal figures, others not at all, and most fell somewhere in between.
    Nonetheless, like most OvCa women, I hang onto CA125 results as if my life depends on them (which in a sense it does!).
    My advice to you is enjoy (if that's the right word) the good result - and long may they continue. Mine have been low and stable since my chemo but I know that situation might change at any time - I'm afraid that is the cross we OvCa women have to bear - we have to find ways of parking that idea so that we can start living relatively normal lives again.
    As for other people's experiences - we truly are all different when it comes to cancer. I think it's best not to focus on such differences too much because they rob you of the chance to feel normal again.
    My approach to the whole hideous experience has been to mark off as many milestones as I can. And each CA125 test is another milestone in a long series of milestones, and each good result is another step away from the cancer.