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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.

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

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.

Exploring options

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.

The appointment

The consultant’s secretary has now phoned back with an appointment for next Wednesday afternoon, so finally things seem to be moving a little quicker. She said that the consultant may not be there himself as “he has a conference in the morning” but that they are having a multi-discipline team meeting about Elaine tomorrow morning.

Rays of hope

P, the stoma nurse from the hospital, has just phoned. She has been really terrific throughout, ever since Elaine’s first appointment – compassionate, caring, concerned and optimistic. She told Elaine that “We’ve got it early this time. We’ll get rid of it. I still think you are going to live to be a very old lady.” P reassured Elaine that if she had to have a colostomy bag, it would be far easier for her to manage.

P also said she would chase up the appointment.

The phone and doorbell have been ringing all the time with friends giving their support, and we’ve hardly told anyone yet. Thanks so much.

Getting the appointment

Elaine has phoned the hospital, and spoken to the consultant’s secretary, asking about when the appointment would be. The secretary was helpful but very vague. When Elaine explained that she had been told by the doctor conducting the colonoscopy that there seemed to be a return of the cancer, the secretary asked, “Were you told there would be another appointment?” She is going to inquire and get back to us. There was absolutely no sense of urgency on her part. We had the phone on speakers, and have recorded the conversation.