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.

We’ve just added a piece about the curtain battles to the Memories/anecdotes page.

We’ve just created a new page – see right menu – describing examples of recovering against the odds. Examples of people recovering from doomladen medical opinions will help strengthen Elaine’s resolve.

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

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

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

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

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

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

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

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

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.

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.

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.

We’ve started this blog to help Elaine through the coming challenges. As well as sadness and worry, we hope there will be inspiration, passion, imagination and humour. Please add your comments. Elaine and I will try and use this blog to keep our friends and contacts up to date. Chris

It looks like Elaine’s cancer has returned. She had CT and MRI scans on Monday – we don’t yet know the results. Yesterday, she had a colonoscopy and the doctor who performed it said it was his opinion that there is evidence of the “return of the disease” – again we won’t know for definite until the samples have been analysed. It probably means another two week before we know the prognosis and possible options.

We now feel that Elaine should have been seen much more regularly than she has been.

Letter sent by me (Chris) to the consultant, copied to the chief executive, and our GP.

Dear Mr S,

I am writing this two days before we know Elaine’s prognosis in respect of the scans and colonoscopy she is about to have tomorrow and Tuesday. Many of the matters I raise below will not have been within your area of responsibility but I am outlining them so that you can understand Elaine’s frame of mind.

At the outset, I would like to express our greatest appreciation and gratitude for the NHS and the kind and sensitive support and expertise we have received from the nursing and medical staff.

However, I am writing to express some of Elaine’s worries and concerns. She is very, very anxious because of some of her experiences last year at the 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

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.

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.

Post operation care

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.

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.

When Elaine had visitors and wanted some privacy, objections were made by the Ward Sister 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.

The liver

Elaine was told that something was seen on the liver by Mr. S that was probably benign but should be checked. On her discharge at the end of February she heard Mr S 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 S 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.

Acidic burning defecation

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.

Bowel blockages

Elaine has had several admissions into hospital with these and has had several of them which she has managed at home.

Follow up

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 hasn’t happened. Her last and only colonoscopy was in January 2005. She was not given any information about how many times she could expect to be seen in Mr S’s clinic.

We now understand that the protocol for her type of illness is three monthly consultations which she has not had.

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 L. She informed L 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.

Wednesday, 24 May

At the re-arranged appointment, Mr S finally took the “acid defecation” seriously, and made an examination where he saw something bleeding in the bowels

For the past 10 days, Elaine has been in a state of terror, fearing the worst. It has led to her seriously contemplating suicide as she now has little trust in the system and a horror of a permanent stoma which may not work as the last one didn’t. No-one should have to go through what she has been put through in the past ten days; surely the NHS is mature enough to be able to offer some kind of support for people waiting like this, or to move procedures so that the waiting is minimised.

But much of the fear has been caused by her earlier experience, outlined above.