Bad news

Had the result of the scan this afternoon.

Things have got “substantially” worse – with more cancer in the liver, more on the para-aortal node and some “spots” in the lungs. Although Dr J said it had developed as she would have expected, this news could not have been more unwelcome.

Dr J advised that it was important to start chemo within the next 2-3 weeks. However, she confirmed that the response rate to chemo is still only 50%.

Elaine feels strongly that she doesn’t want to go to Calderdale Royal, after all that has happened, and that we’re prepared to drive to Leeds Cookridge, under Dr A. It will be a long drive. She warned us that we may find that gruelling but that she would support us, and if we wanted to return to Calderdale at any time, that would not be a problem. We would need the agreement of our local practice GP. Some discussion and reflection needed here.

All those who raised eyebrows at the organic, vegan diet and the wide spectrum of witch’s concoctions may well feel vindicated, but who knows whether that hasn’t held back the speed of advance. And no other cancer patient in the crowded waiting room this afternoon looked as healthy and glowing as Elaine.

There’s still the mistletoe treatment!!!

My right foot

I had my scan yesterday, and we should know the results when we see Dr J on Tuesday.

It’s been a tough couple of weeks and both of us have felt too fed up to write anything. After an inspiring weekend in the Lakes two weeks ago, I’ve had a series of bad nights, and then my foot started getting more and more painful, so by yesterday I couldn’t walk hardly at all. Our GP had ruled out gout when I asked him, and we accepted it was the result of the diseased para-aortic node pressing nerves. I was also getting more and more tired. If I did any activity, I needed to sleep. We both thought it was the onward march of the cancer and were feeling very low about it.

Chris had been pressing me to see the GP about my foot for some days but I couldn’t see the point. Yesterday it was so painful that I agreed and saw a different doctor in the afternoon. Dr M said it was gout! (What Chris had been saying from the beginning of my foot problems in April). It was a much easier diagnosis yesterday as the foot was hot and inflamed. Dr M also said that the foot was probably infected – which is likely to be why I have been tiring so much.

And since taking the antibiotics and anti-flammatory tablets (treatment for gout) there has been a very definite improvement. So we’re smiling again.

What a difference a doctor makes

Second opinion

Elaine’s mood immediately improved after spending an hour or more with Dr A. at Leeds Cookridge Hospital today. It was not because of any promise of a cure – there was none – but because we had our every question discussed and thoroughly answered!

The consultation with Dr A. was our “second opinion”. He was a cross between the Startrek Voyager “doctor” hologram and a character out of an AJ Cronin novel (even the soft Scottish lilt). Not only was he very knowledgeable, he was a first class communicator; when he wasn’t sure about a statistic, he went straight to the relevant web page to check.

The mean survival from now is still only 18 months but he said categorically that he had many patients who survived much longer.

Having now received some concrete evidence about the drug combinations which Elaine would be offered, chemo looks a far more likely choice. Chemo would be done in periods of three months, each folowed by a scan and re-assessment.

I’ve just returned from driving Elaine to the Lake District where she is having a weekend with the Gentle Way with Cancer group. I drafted some of this while we had a break at a cafe in Settle en route. When I read it through to Elaine, she said she wanted to add that Dr A had really lifted her spirits and that she no longer felt like a dead woman walking. What a difference a doctor makes.

End of phoney cancer

Elaine has been quite ill for the past couple of days. Firstly, her foot has been giving severe pain. This is the third or fourth bout of foot probelms, lasting a week or two each time, and making it difficult to walk. To date, it had been a mystery and the doctors were suggesting a ligament problem. Our GP made a home visit today and told us he thought it was probably caused by the cancerous aortic lymph node blocking nerves. Every night this week, Elaine has had diarrhoea, and last night she was vomiting too. Our GP said that he thought it seemed like liver associated problems. All this is a great disappointment, as it means the cancer hasn’t yet been defeated by the therapists and witches’ brew.

The Phoney Cancer

At the moment, it seems we are going through the phoney war of winter 1939/40. The country was at war but no fighting taking place. Elaine has cancer but there are no real symptoms. We know the cancer has returned and is apparently not curable. The doctors and scans have revealed that. But at this stage it is not obvious; even the bowel problems seem to have abated.

Of course, there is still the fear and anxiety which, at the moment, is worse than the disease itself. And Elaine has more periods of tiredness than normal – but this could be put down to one or more of the various medicinal concoctions Elaine is consuming:

These include

GP prescribed: Metformin (diabetes), bisoprolol (blood pressure). The Metformin is not essential for Elaine’s diabetes which has been diet controlled for years, but a New Scientist article revealed a connection between cancer and diabetes and the possible benefit of Metformin in controlling tumours.

The full Bristol Cancer Centre mineral and vitamin programme of Vitamin C complex, carotenid complex, flaxseed oil capsules & a multi-vitamin and mineral pill.

Herbalist prescribed:

  • Herbal mix
  • Cats Claw tea from a herb gathered in the Amazon used by shamans against cancer and various other ailments.

Homeopath prescribed

  • Lypcum
  • Carc and hydra on alternate weeks

Other stuff

  • Laetrile – 30 apricot kernels a day with a digestive enzyme
  • Chorella – green sea algae – good for cancer
  • Milk thistle tablet – good for liver
  • Co-enzyme Q10 – makes all other tablets work better
  • Wheat grass juice – “so nasty it must be killing some of the cancer”
  • Inositol – from Jan De-Vries clinic – on order
  • Probiotic powder – 1 tsp a day
  • Diet – vegan and organic.

And then there’s the acupuncture and healers, and meditation and yoga if there’s time. Oh and a daily swim.

I suppose this phoney cancer will be revealed some more by the next scan, which will show how much further it has spread, or whether the witch’s brew above is having an effect.

More incompetence from Calderdale Royal

We started this blog with the letter I wrote to Calderdale Royal at the beginning of June. Nearly three months later, I still have not received a proper response. Their latest letter to me says that are still waiting for Elaine’s permission to release the results of their investigation – having sent me a letter on 12 June confirming they had received Elaine’s consent! Elaine has asked me to post my latest letter which I am sending today. Chris

Saturday, August 26, 2006

Re: Elaine Connell
Royal Calderdale Hospital

Brief chronology.
Bowel op: 24th January 2005
Reversal: 7th February
Liver operation at St James’: 31st May 2005
Chemotherapy: March 2005, July 2005 to January 2006

Dear Mrs Whittingham,

On 4 June, I wrote to the hospital with some concerns in respect of my partner, Elaine Connell. You initially replied on 8 June saying you would contact me “within 4 weeks with either our response or a progress report.” Over two and half months later, I have not received this.

On 12th June the hospital wrote confirming receipt of Ms Connell’s consent to release medical information. Yet on 9th August, the hospital write to me saying you have not received Ms Connell’s consent. I have both letters in front of me as I type this.

It is exactly this kind of administrative incompetence that aroused concerns expressed in my first letter, and which seriously undermines our faith in the hospital management.

We have certain questions which we would like answering.

1. Ileostomy – Why did this go wrong?

After her operation Elaine’s ileostomy bag presented many problems in that it kept coming away from her body. She also developed very badly excoriated skin in the region which was very painful.

2. Why was Elaine not listened to, or taken seriously

Elaine is an intelligent and articulate woman. We cannot understand why the nursing sister refused to respond to Elaine’s concerns.

Elaine is not squeamish and has in the past done some nursing training. She has had no difficulty in helping others change their bags. When Elaine complained about the problems, she was not taken seriously by the Ward sister who gave the impression that the problems were all of Elaine’s making. As did the consultant: “You cannot stay in hospital forever. I have 86 year old ladies who do this.”

Yet, highly trained stoma nurses were unable to affix it so that it remained attached for more than a couple of hours or so.

Since then Elaine has seen other people’s stomas and photos of them on the internet and realises that hers was not properly formed. She has never been offered an explanation for what happened.

If the outcome of the scans and colonoscopy mean that Elaine has to have a permanent stoma, she is terrified that all this could happen again.

3. Why was Elaine forced to share a room with senile, incontinent patients so soon after her operation?

Elaine was returned to the ward from the ICU very early after the operation. We asked for an individual room but were told that this wasn’t possible, even though there were empty rooms constantly available during Elaine’s whole month in the hospital.

At times she became desperate for sleep. It also seems to both of us that priority for single rooms could be given to those learning how to use and manage an ileostomy bag; especially if that person is, like Elaine, having very serious problems with the bag management.

Senile, incontinent patients were on the same ward. These ladies were often awake right through the night disturbing other patients. The kidney infection Elaine caught was probably caused by this.

4. Would Elaine have contracted a potentially fatal kidney infection if she had been given a single room, or a room with other post-operative patients?

5. Why were visitor regulations not enforced around a patient who had so recently been through surgery of six or more hours?

Visitor regulations were not enforced so that a large family with loads of young children was right next to Elaine’s bed, giving Elaine great distress.

6. Why did the Sister of Ward B resist Elaine basic need for a little privacy?

When Elaine had visitors and wanted some privacy, objections were made by the Ward Sister of Ward 4b and one of the staff nurses when she pulled curtains round her bed. This was a complete contrast to St. James’s Hospital where the staff appeared surprised when Elaine asked if drawing the curtains around her bed was acceptable to them.

7. Although the consultant instructed staff to arrange a MRI asap, this didn’t happen. Why?

Elaine was told that something was seen on the liver by Mr. Subramanian that was probably benign but should be checked. On her discharge in February 2005 she heard Mr Subramanian tell one of the staff nurses to arrange an MRI as soon as possible but this only happened a few weeks into her first course of chemotherapy which began in mid March. The MRI was eventually done at Elaine’s insistence and did not occur automatically, as Mr Subramanian had instructed. In the event, Elaine had to have half her liver removed at St. James Hospital. Had Elaine not insisted, it may have become too late for surgery. Who know whether this delay may have had an influence on her current condition.

8. Why did Elaine’s repeated asking for an explanation of Acidic burning defecation never receive a response?

Elaine has complained about this ever since she left hospital in February 2005. No-one has been able to give her an explanation, or even acknowledge that they understood what she has been talking about. At times she has felt like she has been disbelieved & had considered seeking a private consultation about it.

9. Why did the second colonoscopy not take place for nearly eighteen months?

Elaine was told to expect six monthly scans and an annual colonoscopy. She has had one scan at St James in November 2005 but the colonoscopy never happened. Her first colonoscopy was in January 2005 and only followed up on 6 June when we started asking questions in late May this year.

10. Why wasn’t Elaine seen by the consultant for so long before the eventual May appointment?

She was not given any information about how many times she could expect to be seen in Mr Subramanian’s clinic. We now understand that the protocol for her type of illness is three monthly consultations which she has not had.

11. Why was Elaine not notified about the May appointment? Is it really enough to rely on the post with such serious matters?

After not hearing for some time, I urged her to contact the hospital. She contacted the stoma care nurses in April and spoke to one of them named Lisa. She informed Lisa of our concerns that she hadn’t received an appointment for the colonoscopy and asked her if she could investigate. She said she’d get back to Elaine, but didn’t. In May, I persuaded Elaine to phone again. She was told that she had missed an appointment for that very day: 17th May. We had not been notified of it.

12. Why was Elaine told firmly on by both doctors and nurses on 28th June that she should attend a scan timetabled for the next day at St James when it had already been cancelled. I needlessly took a half day off work to drive Elaine all the way to St. James.

I write as an enthusiastic supporter of the National Health Service and feeling that if Elaine didn’t have the best experience at Calderdale Royal by our raising these serious questions we can perhaps play our part making things better for the future.

Hope

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.

Some more thoughts about my visit to the oncologist.

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.

Appointment with the oncologist

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…”

Questions for Dr J

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.

Liver and lymphs

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.

Is it now time to go fully alternative?

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.

CT scan: “Oh, it’s cancelled”

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.

Arriving early for the hospital appointment

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?

Questions

Our prolonged dealings with Calderdale Hospital have raised an important general issue about the right of patients to share knowledge of their condition.

To what extent should patients be encouraged or allowed to ask questions? We would hope that we are moving to a time when the patient can if s/he wants be fully involved with understanding what medical decisions need to be made. The Internet, used wisely, can of course help this process. We have have greatly appreciated the open approach followed by our GP and St James’ in Leeds. 

However, in some of our dealings with Calderdale Royal, we so often feel that we are being regarded as disrespectful, ungrateful, not trusting or even insulting if we persist in asking detailed questions about Elaine’s treatment. 

Here are some matters for which we would still like further explanation.

1. Elaine repeatedly told medical staff about severe problems with the stoma? Why was she undermined, almost treated like a recalcitrant child and not taken seriously?

2. We have now (17 months later) had it explained that bile was causing necrosis. However, we don’t understand why this happened with Elaine, and not other patients having similar treatment. Why was bile able to form and give Elaine so much discomfort with her stoma?

3. Why was this not explained to Elaine at the time?

4. Why were experienced and highly-trained nurses and medical registrars not able to recognise necrosis? Is this not in their training?

5. Why did the consultant leave it so long before examining the stoma himself?

6. Might the need to do an early reversal of the ileostomy have increased the chances of the cancer returning?

7. When patients have rectal cancer, is it usual to wait eighteen months before doing a follow up colonoscopy?

8. When patients have cancer, is it usual to go over six months between one hospital consultation in their specialist clinic and the next?

9. Elaine has complained at every consultation and emergency hospital admission about acidic defecation. Ever since she returned home after the operations in early 2005. At her recent meeting with the consultant (and subsequently confirmed on the web) it was suggested that acidic defecation is caused by mucus which she has since learned is an indication of cancer. This raises the question that the cancer remained present after her operations. Could this be the case?

10. Elaine is a rather unusual patient. She recovers from things unexpectedly. She recovers from serious surgery so quickly it beggars belief. She similarly succumbs to illnesses against expectations. Clearly, Elaine is one that doesn’t fit the mould. Has this in any way been taken into account when making decisions about treatment?

Biopsy

Elaine had her biopsy under general anaesthetic today. Everything has gone fine, and she is now back home recovering. The nurses, doctor and Irish anaesthetist were all wonderful. But . . . none of them could give an explanation of why Elaine had to be there at 11.30am and the procedure was due to be done between five and six pm. Still, she had her marking to pass the time.

Consultant’s response to letter

When we started this blog, one of my main fears was further surgery leading to a bag. This was because of my experience last year.

Yesterday, we received an explanation (not complete but far better than we’ve had so far) of what happened with the ileostomy bag. Apparently it wasn’t (as I understood it) the stoma which retracted but the skin around it which started to “necrotise” die in other words because bile (which has the action of caustic soda) was seeping on to the skin. I didn’t think to ask how that happened. He said that it was a known possible complication but he had never seen it himself and neither had the stoma nurses.

When the bag hadn’t been sticking and they reported the condition of my skin he’d believed that I had some sort of allergy to the adhesives so he recommended different ones and different methods of affixing the bag.

He had had it reported to him by the nursing staff on the ward that I was just not trying to manage the bag myself and indeed had fainted the first time I had seen the wound during my first lesson in how to put it on. He didn’t say this directly but the implication was there (which I felt all along as I have said on numerous occasions) that this meant I was somehow nervy. In actual fact there was a good reason why I had fainted.

The night before the first lesson a lady had arrived as an emergency admission. That morning we’d got talking and after a while she told me that she was one of the Ripper’s surviving victims. She said that she didn’t tell many people about it but somehow felt she could talk to me. She told me the story of that awful, awful night and showed me the scars from what he had done to her. Remember I am a week away from a dreadful operation and feeling vulnerable. I held it together in front of her because I felt so sorry for her (she was an absolutely remarkable woman who I became very friendly with BTW) but about ten minutes after I’d had this experience the stoma nurses arrived to take me to the bathroom to have the first lesson. As I stood up from the wheelchair I was in a terrible state, I should have told them there and then I didn’t feel up to it but I gritted my teeth and tried to get on with it, failed and fainted. I didn’t feel of course reveal this woman’s story to them. So I think they presumed I fainted at the sight of the wound and the thought of what I had to do.

The consultant said that I have always “presented as a very nervous and anxious patient” which is of course absolute b*llocks, the same b*llocks which had MrC described as “abusive” by one of the staff nurses when we disagreed with her about my drawing the curtains around my bed. Mr C stuck up for me on that but we didn’t spend too much time on it.

The consultant went on to explain that after a week had gone by where no progress had been made in my managing the bag he and the ward Sister had come to be tough with me as a method to try to spur me into doing it. That was the point I described in my blog when I spent the whole night crying and very nearly decided to kill myself as I had access to my own tablets. Next day I wrote him a rational letter setting out the case that the stoma nurses weren’t able to affix a bag that lasted more than a couple of hours & that I feared going home if they couldn’t do it.

He then (for the first time) came and examined the stoma site and discovered the necrosis of my skin. He actually said that then he “felt awful” and reminded me of how then he’d been every day, did the earliest reversal he had ever done and had given me excellent care. Our letter is also the only complaint he’s had in 25 years. I don’t feel he’s a bad bloke, I never have which is what made it all so hard. I wish we’d taken in a hidden recorder yesterday though.

When I told Kate (my daughter) about me supposedly being a nervous and very anxious patient she was outraged by that suggestion. “It’s obviously him covering his back about why he hadn’t looked at the stoma earlier.”

D Day

We met Mr S, the consultant this afternoon. He confirmed that the cancer has returned, and that there is probably no point in further surgery.

The cancer has returned to the liver, and is also in the paraaotic node. The biopsy taken at the time of the colonoscopy did not reveal any cancer but Mr S is pretty certain there is cancer in the rectum where the join was made.

Therefore, Elaine has to have another biopsy (this Friday) under general anaesthetic to check out whether cancer has returned in that region. We asked why. How would that affect the treatment. He explained that if there was no cancer in the rectum, Mr P (the liver surgeon at Leeds) might decide to operate again on the liver; if the cancer has returned to the rectum, it would be deemed that there is no point operating on the liver. The only point of further surgery would be cure the cancer. If this cannot be done, further surgery would be futile.

The cancer in the paraaotic node could not be treated surgically anyway.

So although, it is now the view that Elaine’s cancer is incurable, it is going to be treatable with chemo. No-one can say how successful this is going to be, or how long Elaine can survive. We will have to discuss chemo options with the oncologist, Dr J.

Of course, we are very, very said at all this news. However, in a strange way, Elaine is really relieved that she is not going to have to be cut around any more, or have to live with a bag.

Elaine still looks great and very healthy, and is now looking at returning to Bristol and finding another path to deal with this plague of hers. As has been said elsewhere on this blog, Elaine doesn’t always follow the script.

We will return to this posting later and develop it some more, and recount our discussions with Mr S about my letter.

Talking with Bristol

Last summer, Elaine spent a week at the Bristol Cancer Centre. This entitles her to free 15 minute telephone consultations with one of their GPs. Yesterday afternnon, Elaine spoke with Dr S. She said that it sounded like Elaine would have to have another operation, and it would almost certainly result in a colostomy. She was able to reassure Elaine that she would find this far easier to handle than she had the temporary ileostomy.

Elaine had feared that she would have to change her diet considerably, away from the healthy one that she normally eats. She was told that the Bristol Centre had a specialist nutritionist for people with colostomies, etc and that Elaine would be able to have telephone consultations whenever she needed to. Dr S said that she tended to think that Elaine’s cancer probably had genetic causes, and that her diet may well have been staving it off for years.

Dr S remembered Elaine and said that she was “in absolutely remarkable condition for someone who was just six weeks from having had major surgery”, that she seemed to have remarkable recuperative powers.

She encouraged Elaine to try and have any surgery in Leeds where she would be treated by a colo-rectal specialist and not have to recover in a general ward.