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.

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.

I think what hurt most of all was when I was accused of being “abusive” by that oaf standing at the reception yesterday. The man actually reminded me of the way some kids say, “You can’t talk to me like that, that’s abuse,” when I am merely being sarcastic.

It also reminded me of the time when one of the staff nurses had said that Chris was being “rude and abusive” when he was merely challenging her, actually in a rather low key way. What it all comes down to is that both of us were acting as if we were people with some authority rather than people in a submissive position which is how the NHS likes to have its patients. The actual word patient says it all, doesn’t it? Except at times I’ve felt I’m moving into the further category of invalid which translated means in-valid without validity because you’ve got a serious illness. I loathe and detest being so vulnerable and dependent upon people who I am increasingly feeling I can’t trust. Cancer is the enemy and I need all my energy to fight it, I shouldn’t be having to fight the NHS too. Even Napoleon and Hitler couldn’t fight wars on two fronts.

A friend wrote to me today about his own experience when his father was fatally ill:

“My father deserved good treatment, he didn’t get it. He got disgraceful treatment until I took a deep breath and attacked with the full middle-class weaponry: letters, qualifications, posh accent. The bastards drop likes flies when they think you can string a sentence together. I detest ‘the insolence of office,’ and make a service public doesn’t mean it serves the public; frequently the opposite, and not just in health.”

And that is just what we’ve had to do write letters, have the confidence to go and find the consultant’s secretary & complain, then offer to pay privately. All that has got me a result, an appointment out of turn with the consultant next Tuesday. But it’s exhausted me, left me feeling very insecure and wondering about what’s happening to other people who haven’t got either my resources or general attitude.

I suppose people tolerate it because they’re ill and vulnerable but it occurred to me today that would Americans tolerate this? No, they’d be on to their lawyers. Would the French? No, they’d be on to their streets.

I am increasingly wondering whether to withdraw from conventional medical treatment altogether as it is becoming so stressful & I know all the figures about the problems that chemotherapy causes for example. And if I don’t survive at least I’ll die not having had to engage in so much frustration and conflict & not feeling humiliated as I have today. I think this has been the worst part of it feeling so insignificant and degraded. In some ways I would have preferred to have paid for this consultant’s time as a method of reasserting my control.

I went for the CT scan at St James’s this morning, driving the 26 miles from Hebden Bridge in rush hour traffic to get there for 10am. When I’d been waiting for nearly 20 minutes, one of the technicians came out and told me that as I’d had this test in Halifax on the 5th June my consultant (Mr P) had cancelled it! The consultant’s secretary said she had told me of this when she’d phoned me to arrange my appointment with him (all part of my falling through the two hospital’s cracks saga) but she hadn’t. I wouldn’t have forgotten something as important as not having to go all the way to Leeds when I didn’t have to.

In the past week I had actually asked one of the stoma nurses at Halifax who’d phoned me up with my appointment with the oncologist next month if I actually needed to go for this test as I’d had the same one earlier this month. She’d assured me that I ought to go because the consultant at Leeds was maybe accustomed to the interpretations of his own radiographer. Yesterday I asked the registrar at Calderdale Royal the same question. Did I really need to go to Leeds to have the same test I’d had in Halifax only a couple of weeks ago? He also urged me to keep the appointment.

But today the appointment was cancelled without anyone thinking to tell me either by letter, phone or email. The technician explained, “It’s not a good idea because there are some risks associated with the injection we give you and it would be subjecting you to unnecessary radiation.” Which is what I’d thought in the first place and when I’d sought medical opinion had been told to go anyway!

Chris had gone off for what he’d thought was going to be a couple of hours in Leeds whilst I was having the test. I went off to the cafe and cried. I felt like such an idiot crying in public but I felt completely worthless as if I just don’t count. No-one could be bothered to either notify me of a change or give me the correct information when I’d actually asked the question. And then to be told it was my mistake. That I’d been told on the phone when I knew I hadn’t! To be honest it makes me feel like giving up.

I eventually got in touch with  Chris who returned to the hospital straightaway. We decided to go and see the consultant’s secretary to express our concerns and see what we could sort out. We went to the wing where we knew his clinic was but could see no notices as to its actual location. No one was on reception so we were directed via a notice back to the wing we’d already walked from to seek help.

We tried to get directions out of a man behind the reception desk who really hadn’t the first clue about how to direct people. He couldn’t have directed us up the region of his own arsehole. We kept trying and failing to get more specific directions out of him because he kept saying things like, “Then you go through an entrance,” to which Chris would reply, “Which entrance, there are several?” or “To the right or to the left?” At which point the man looked at him as if he were slightly dotty because everyone knows where the Lincoln Wing is, don’t they?

I began to understand why men don’t ask other men for directions if this is the response they get:-0) Finally this man made the comment that, “You’ll know where you are when you see it.” To which I replied (a little tetchily I have to admit), “Look last time I looked I didn’t have psychic skills. How can I be expected to know something I have never seen?” At this point another hosptial employee who looked like a theatre porter who was standing nearby said, “There’s no need to talk to him like that. We have policies against abusing staff you know.”

This time I really let rip (well for me anyway), I burst into tears telling him that he had absolutely no idea what I’d been through in the past year and how dare he tell me I was being abusive when all I was trying to do was to get effective directions. I also told him he’d know what abuse was if he did my job. He then accused me of shouting and abusing him! At which point we just walked away headed in the direction we thought it might be, found a more intelligent human being who actually took us to the consultant’s office.

We talked with the secretary who still maintained that she thought she’d told me that the CT appointment had been cancelled. “If that’s so shouldn’t it be backed up by a letter?” enquired Chris.

“Oh no we don’t send out letters for cancellations,” came the reply to that one.

However, she was apologetic and helpful, took our numbers and said she’d talk with the consultant about my case. Later she rang us up to say that letters and the scans were being sent immediately from Halifax. But notice that it had taken us going in person to see her and complain about it. Chris and I had discussed going to see Mr P privately as I feel I can’t wait any longer so I asked her how I could arrange a private consultation with him as his next clinic at the hospital wasn’t until the third week in July.

“Are you in BUPA?”

“No, but we’re willing to pay.”

She gave us his BUPA secretary’s phone number. Very soon after, we received a further call saying that Mr P didn’t want us paying out of our own money to see him and he’s arranged to see us on Tuesday on the liver ward!

This might be a result but I feel utterly drained and yet again worried about the lack of communication between the hospital and dismayed by the efforts Chris and I are having to put in. Getting all churned up like this can’t be doing my immune system any good. I feel at times like I’ve wandered into the mundane, absurd and surreal world of a Kafka novel.

I got to the hospital a little earlier than I anticipated today -  about 4.15 this morning in fact. Last night I began to suffer from the all too familiar symptoms of a bowel blockage but thinking that I could manage it as I have every other one since last September I went to bed prepared to be up a lot in the night. In fact, I was throwing up all of the night and the pain in my abdomen began to feel like labour pains. No amount of breathing and visualisation (a healing white light aimed in the direction of my intestines) could control it and when Chris came downstairs sometime before three this morning to see if he could help we decided to phone 999 and get me to the hospital.

A pair of very jolly female paramedics could not negotiate the ambulance up Windsor Rd owing to some rather inexpert parking, so I tottered down the street shivering and wondering if I was about to faint from the pain & the dehydration caused by three hours of almost non stop throwing up. Made it inside where they decided to give me maxolon and tramadol for the sickness and the pain, but first they had to find a vein. This took all of 15 minutes nothing to do with their competence, experienced doctors find my veins hard to get at. As Morgan has remarked I’d have made a useless junkie. However, they finally made it and the tramadol soon took effect making this particular ambulance ride the very easiest one I’ve had in this condition so far.

On reaching the hospital I began to feel like a bit of a fraud as the pain was rapidly receding and the sickness had stopped. Just before we got out I even managed to tell them about the new craze in Bradford whereby the kids are enhancing the effects of Ecstasy by injecting it into their gums. It’s called e bah gum. They liked that one.

I was soon settled into a cubicle in A&E recognising some of the nurses from past visits, including one who’s our former dustman. The first time we’d discovered that fact was when he’d been inserting a cannula into my hand. Chris had to stop himself from asking him if he’d washed his hands!

In all our dealings with Calderdale Hospital we have found their A&E department to be excellent, staffed by a set of very caring, competent and cheerful people. I have often described them as the supply teachers of medicine, having to be prepared for anything patients literally as well as metaphorically might throw at them. In our trips there in neighbouring cubicles we’ve overheard some very far gone ill and injured drunks indeed and always been impressed by their skill at handling them.

I was in no pain & had perked up considerably when Chris left at around half four. Just after he’d gone I had a sudden urge to go to the loo and the problem was solved before I’d even had the chance to see the doctor. Again I was impressed by this particular medic, a Nigerian who after examining me and hearing bowel noises decided I didn’t need to be admitted this time and told me I had a “very strong spirit” after we’d had a 15 minute discussion on Nigerian politics and the evils of what Shell is getting up to in that country.

It wasn’t a busy night/morning and so after she’d heard about my appointment with Mr S in a few hours time the Sister allowed me to stay in the cubicle until Chris came back to the hospital at 8.15 ready for my 8.45 appointment. When I asked I’d fully expected her to say this wasn’t possible and that I’d have to phone Chris or get a taxi back home so another pleasing example of how helpful some of the staff can be there.

Off to Mr S’s clinic only to find that he wasn’t taking it. Longish wait to see Dr. B, one of his registrars who the Nurse told us was taking so long to see me because, “He’s reading your notes.”
“We’ll be here ’til lunch time then,” remarked Chris grimly as she left the consulting room.

Dr B was another example of the good medics who can be found at Calderdale. He shook our hands, looked us both in the eye when he was talking to us and asked, “Have you any more questions?” at the end of the consultation.

The news is that the deep biopsy showed that there’s no cancer in my bowel which is just very inflamed. However, at its meeting last Friday the team had decided that the cancer in my liver was probably inoperable. That hadn’t been the impression we’d got from our last meeting with Mr S and we wondered if he’d decided to give us the bad news in stages? This was why they’d decided to make me as immediate an appointment they could with Dr. J the oncologist for 14th July. But of course they aren’t liver experts & I was encouraged to go for my scan tomorrow at St James’s and to see what Mr P the liver consultant there has to say about the prospect of further surgery. An added complication is the lymph node involvement in that region of my body.

So, it’s still not brilliant news but I feel far more optimistic than I have at any time during this long, dark month. At least I don’t have cancer in two places & somehow I fear cancer in the bowel far more than the liver. Maybe it’s because I’ve had no symptoms connected to the liver as yet or maybe that I don’t know enough about it to get as agitated as I have been feeling about the bowel. If it can’t be operated on it is incurable, but it can be controlled by chemotherapy. I will of course continue to use all the alternative/complementary medicines and healers I have been using so far. I keep reminding myself that I was supposed to die from the viral cardiomyopathy I contracted 10 years ago. I made a “miraculous” recovery from that. Who’s to say I can’t do it again? I may well be giving myself false hope but I don’t intend to just lie down and die quietly. When did I ever do anything quietly?

Today, Chris received a reply to his letter (see first post) from the “Risk Manager” at the hospital with a form for Elaine to sign, giving permission to share her clinical information. Investigations into our concerns “have begun”.

“We will contact you within the next four weeks with either our response or a progress report.”

In the meantime, Elaine may have to decide whether to go back into their hospital if she has to have another operation.

A neighbour (L) visited today. She too had not been informed by post of a crucial medical appointment. The hospital insisted that she had been sent a letter which she hadn’t received. Because she was in contact with them by phone she was able to learn of the appointment. During the appointment, she was handed an information pack about the proocedure. There in the pack: the missing appointment letter.

And then one thinks of these highly paid NHS managers devising more efficient procedures. Huh!!!

Got home this afternoon to learn that I have an appointment with Mr S’s Registrar this coming Wednesday. Obviously I am pleased to be seen so quickly – maybe that letter did something after all but I am also consumed with dread. I thought I’d have at least a fortnight’s grace. And strangely enough for the past week or so my bowels have been behaving themselves perfectly, almost as if there has never been anything wrong.

The fear that the Calderdale Hospital now inspires in me is hard to explain but we have an appointment with my GP on Monday morning to discuss a private consultation with someone else and what other hospitals might be available.

I must say yet again that I encountered some marvellous nurses and health care assistants in that hospital who were truly caring and utterly professional. BUT it’s always the authoritarian or the impatient who stick in one’s mind just like the awful teachers remain in the consciousness forever long after you’ve left their class.