Today I received a copy of  Icon, a magazine produced by Canceractive which provides “integrated cancer & oncology news”. I read an article on Professor Karol Sikora, consultant oncologist at the Hammersmith Hospital who is a supporter of integrating conventional and complementary therapies in the treatment of cancer.

He is very interesting on the subject of hope, a commodity which I have mentioned seems to be in short supply at Calderdale Hospital.

“There is a further area in which orthodox and complementary medicines make difficult bedfellows. And that,” says Sikora, “is the unfathomable quality of hope. If you have had, for argument’s sake, three different types of chemotherapy for, let us say, metastatic colon cancer, there is, realistically, not much more orthodox medicine can do for you. A doctor may not want to force that information on somebody, but if asked directly whether there is anything else to be tried, you have to say ‘probably not’. People then react in different ways: some curl up and die, some embark on a round-the world or Internet odyssey searching out secret cancer cures. Many complementary practitioners,” says Sikora, “take a different view. They won’t give up. I remember having a right ding dong at a meeting with Bristol and the Hammersmith about the issue of hope. Is it ethical to say there is nothing more to be done, even if you are approaching medicine as a hospital technician? If you gon’t convey that message are you offering false hope, which was the accusation levelled by the orthodox against the complementary. Not so,” says Sikora, clearly a clinician with heart. “To improve the quality of life is an aim in itself. And if part of that quality of life stems from imparting hope, then delivering it must be part of the package.”

I have so far only had one course of chemotherapy not the three he is talking about here & have been considerably deterred from undergoing further treatments because I gained the impression from my meeting with the oncologist that my case is hopeless. This has been further reinforced when I phoned the clinic to get some information & could hear the change in tone in the nurse’s voice from how she used to speak to me when there was a chance of cure. She also made a remark which included the sentence, “Well now we’re not talking about curative treatments.” If only there were more doctors like Professor Sikora around, ones who can offer some hope to patients.

Over the weekend Chris and I have  been talking about the way the oncologist talked to us both on Friday and in the past. She is very approachable and obviously a caring woman but each time we’ve left a consultation with her we’ve both felt depressed. She has been rather pessimistic at every appointment, refusing to acknowledge that there can be any different outcomes for individuals even though we all know that is the case.

We feel it would have been better if she’d have phrased what she said in a more upbeat way rather than giving out the message in so many ways that I am “Dead Woman Walking.” Perhaps if I’d had a little more encouragement/indication  from her that I have a good chance of being one of the lucky ones who would be one of the 60% who survive 5 years (first consultation),  one of the 40% who survive 5 years (second consultation) or now one of the people who might live beyond 2 years I might feel more prepared to undergo this next round of chemotherapy than I do at the moment.

I am starting to appreciate more and more that we are more than just a collection of cells and body parts & that we need doctors who can cater for our spirits/souls as well as the body. However, these people are sadly lacking. To some extent they have all (even in this country) got the metaphorical lawyer on their shoulder who is preventing them from providing any hope or encouragement to patients who are left to imagine the worst as I am doing. I don’t know if it’s my imagination that there were days when medicine was an art as well as a science but it seems to me that the science has taken over at the expense of the nurturing of the human spirit which is just as important in both recovery and death.

Elaine and I are feeling pretty miserable after our trip to oncologist, Dr J in Huddersfield this afternoon.

Elaine tried to push Dr J into giving a figure in respect of life expectancy. She was very reluctant and seemed to agree it might be two years. Although she conceded that many would survive longer. Elaine is interpreting it to be a year without chemo and 2 years with it. But we can’t really know. She did say that, at this stage there is no cure, just the possibility of holding it back.

Dr J offered Elaine the opportunity to join in a clinical trial in which she’d have a one in three chance of receiving a drug which adds another 5% to the 50% chance the chemo has of holding back the cancer for a while.

She also said that the chemo last time had a curative aim; this time it’s just life prolonging.

She’s also said that in the future if necessary she’d put a case to the PCT to fund something like Avastin as she thinks she’d be a very strong case for receiving it given that she is young (for a bowel cancer sufferer) and strong.

She also thinks that it would probably be OK to leave things for 3 months whilst Elaine sees if the alternative treatments work but of course added the rider that one never knows how fast a cancer may progress in anyone. She thinks Elaine would still be able to join the clinical trial if she delayed treatment for 3 months.

Dr J was very happy to answer Elaine’s questions. In her view, there was no doubt about lymph node involvement and it had been interpreted by an expert radiologist (Q1 – see below). There was absolutely no question of being able to have chemo at home or in Hebden Bridge. (Q4) She didn’t really answer questions 6 or 7, and we probably didn’t press her enough.

Elaine is still physically very well. She looks fit and healthy. No-one would guess she was ill.

Basically, Elaine now has think about whether to delay for three months, whether to reject the chemo completely, or whether to go for it as soon as possible. Elaine’s friend, Thling has just written to her, “I wouldn’t rush into making a decision. Mull over the various possibilities. In time, it will become clear which one is the right one for you.”

Thling also added “I would also remember that none of us knows what is going to happen tomorrow. Your oncologist has given you her expert opinion but it is no more than that, an opinion (and the courts can tell many stories of expert opinions that circumstances turned on their heads). Yes, your life expectancy is limited. But so was that of Spitfire pilots in the war and some of those are still alive to this day. Where there’s life…”

I am seeing Dr J, the oncologist this Friday, 14th July and these are the questions we are thinking of asking.

1. Question about any certainty with respect to extent of the cancer. Mr S has informed me that the CT scan I had at Halifax at the beginning of June showed cancer in the liver and the para-aortal node. Two doctors were fairly certain that the deep biopsy I had on 16th June 2006 would reveal signs of cancer returning to the colo-rectal region. It didn’t. This raises the question about whether we can be certain that there is cancer in the nodes. I’ve read that a definite diagnosis of lymph node cancer can only be made from a biopsy. The diagnosis of lymph node cancer in my case has been made on the basis of MRI/CT scans. Given that my recent colonoscopy seemed to indicate a return of cancer of the bowel which a deep biopsy disproved, might the scans need to be backed up with a biopsy to prove lymph node cancer? (My acupuncturist – while advising me to follow advice from the hospital consultants – has said that as far as she is concerned, she finds no evidence of cancer in the way other cancer patients show it. – deleted)

2. Cure or remission. What is the likelihood that the chemotherapy offered will cure or push the lymph node cancer into remission?

3. What is my life expectancy likely to be with and without chemotherapy?

4. Chemo in Hebden Bridge? Given that one of the NHS’ “Core Principles” is: “The NHS will shape its services around the needs and preferences of individual patients, their families and their carers,” is it possible that if I decide to have chemotherapy I might be able to receive it either at home or at the Hebden Bridge Health Centre?

5. Postponing the chemo to try other ways: I am seriously debating whether to have chemotherapy. How much is the cancer likely to progress within 3 months if I decide to try other means to treat it? (Including, for example, a further visit to the Bristol Cancer Centre). Would it be possible to have MRI/CT scans in 3 months time to monitor the situation?

6. Treatment elsewhere. Along with my partner, and some of my friends and family, I am well used to the rigours of academic inquiry. Using our critical faculties and trying to avoid clouding our judgement with wishful thinking, we have of course been looking at the work of other medical centres. Is there anything you can tell us about possible, pioneering work elsewhere, eg, the Leonardis Clinic in Germany.

7. Bowel inflammation – ever since my bowel operations in January-February 2005, I have had a regular, extremely painful and uncomfortable bouts of severe acidic defecation. It was seeing the inflammation from this that spurred Mr S into organising a scan and colonoscopy. I still have had no explanation for this, or suggestions for treatment.

Comments and thoughts most welcome.

Good news and bad news really.

The consultant said that the area of the liver affected is “quite small” and he would definitely operate if it weren’t for the extent of the cancer in my lymph nodes. Apparently occasionally lymph nodes respond very well to chemotherapy and if they did then he would be able to operate on the section of the liver where the cancer has reappeared. He says that this isn’t rare but would be an “unexpected good outcome.” Looks like it’s 6 months chemo again only this time of a far worse variety than last time. I hate the thought of those weekly trips to the hospital and all that time wasting. Half a day sacrificed for what amounts to 15 minutes actual treatment.

The chemo process will be discussed at my appointment with oncologist Dr J at Calderdale Royal  – 14th July.