Up Shit Creek

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?

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?

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.

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.”

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.

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.

See Memories/anecdotes page

We had a useful meeting with our GP this morning, Dr. D who is going to look into getting other opinions for us. He definitely thought we should hear what an oncologist has to say, as well as a colo-rectal surgeon. But he felt it was very likely more surgery would be needed, and soon. We described Elaine’s anxieties about whether a  colostomy would work any better than the ileostomy did, and about the atmosphere in the ward at Calderdale. Of the multi-disciplinary hearings, he said that at one time the patient could be present if s/he wanted to be. We both thought how useful that would have been to us. On the other hand, there might be a reluctance to talk openly and honestly if the patient were present.