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.
Hi Elaine and Chris,
Haven’t heard from you for awhile and I see there were no updates here at your site. Just wanted to know how things are going and to assure you again of my thoughts, prayers and hopes for you.
Much love,
Jerry
Dear Elaine and Chris,
The more I read the madder I get. Why are we not treating the modicum of human dignity and respect we justly deserve by hospitals and by doctors and their staffs? Why is it so many of them look at us and see dollar/pound signs? I am appalled by the way you have been treated but I think I can say with some veracity that you would get no better treatment on this side of the Pond. I can understand your bitterness, frustration and, yes, despair. I am inwardly pleased that you have not given up. You teach us all a lesson by your courage in the face of hardness and cruelty.
Much love,
Jerry
Hi Elaine,
Haven’t heard from you in a while and wanted to be sure that things were improving, please God! Our thoughts and prayers are with you during this trying time.
Much love,
Jerry
What a catalogue of dreadful treatment ….. thoughts with you and your family
Hi Elaine, mandala here.
Well Elaine – what to say…….I just want to hug and kiss it all better.
Reading your TES thread and this site I’m constantly struck by your dignity and stoicism. You are an inspiration, Elaine.
The stuff about the NHS is truly horrifying. It is terrifying how you – we – are at the whim of individuals for our basic needs.
Dear Elaine,
I think by and large we put too much faith in science, technology and medicine. It is we who make ourselves well, in the main. I think it is criminal that countries such as ours will not permit alternative therapies for cancer. Here (U.S.) you can be locked up and fined if you dare suggest any alternative to surgery, chemotherapy or radiation. I am aghast at how our drug companies and Medical Assoications have a total lock on how one MUST be cured. Of course the great irony is that they aren’t.
The weather is nice here in Pennsylvania (for a change). We can expect more rain later in the week, but I’m happy to say that Doreen and I went bike-riding today along the towpath. I think I sent you some pictures of it. Hope you got them. And I hope this “off-topic” paragraph helps to shade some of the unrelenting misery you have been going through.
Much love,
Jerry
I have just found your link on TES and had a read. I am gobsmacked! This is all so wrong although i guess you dont need me to tell you that! I really hope you get this sorted out and see the light at an awfully long tunnel!
My hopes and best wishes
xx
Hi Jerome, Lindsay & Jack. It doesn’t surprise me in the least that doctors are terrified of hospitals – they know what’s covered up. A doctor acquaintance of ours was absolutely frantic with worry when her small daughter had to go in for a routine tonsillectomy, probably because she knows all that can and does go wrong.
Medicine isn’t an exact science much as doctors would like us to believe that they have it all organised as such. I can accept that. But bureaucratic procedures can and should be far easier to make efficient and I am very angry about the inefficiencies I think have occurred with my case as I don’t believe that keeping track of a patient who is being treated between 3 consultants and 2 hospitals should be all that hard.
I also get enraged when I think of how efficient I and other teachers are routinely expected to be. For example I received an excuse that my liver scans last year hadn’t gone to the Leeds hospital because of an illness of the consultant and an absence of her secretary. Well illnesses and absences of staff happen in schools too but would anyone accept that as a reason for their child getting to school in the morning to find no one to supervise them for the day?
This latest debacle in Elaine’s “Cancer Follies” makes me wonder about medical bureaucracy and related administrative incompetence in general. As an American now starting through screening for prostate cancer in a system supposedly less constipated than the NHS, I am also enountering screw-ups in the transmitting of information. Since I see similar gaffes (and of course, cover-ups) in our American government’s bureaucracy as well, I’m tempted to condemn bureaucracies in general and urge those who are abused to make as much noise as Chris has.
Good on ya, Chris! And for Elaine, as the Greeks say, “Perastiká”–get well!
Elaine, my thoughts are with you, I am absolutely disgusted with the NHS for the treatment you have had a lack of!! If there’s anything I can do, let me know. Much love, hugs etc to you and Chris.
Dear Elaine,
Thank you for inviting me to this blog-site. I had read in Time magazine a few months ago an article about why doctors are petrified of hospitals — even the most wonderful of them. Remember Murphy’s Law: Anything that can go wrong, does . . . . After reading the article, I began to think that hospitals and medicine (in general) may prolong the agony of distress some months, but do nothing for the quality of life. I suppose that is not totally true, but after reading your comments I am left with that awful feeling. Be good to yourself and trust your body.
The annoying thing is Marion that in their private practices they are running businesses and you can bet your life that they’re far more efficient and approachable in those situations. When I had my cardiomyopathy 10 years ago I finally had a private appointment and was bowled over by just how different a consultant’s manner was when I was paying him directly.
I don’t know whether if I’d been seen when I should have been if the outcome (which I still don’t really know) would have been any different. I have since read for example that the burning I kept talking about is one of the symptoms of cancer – it’s because of mucus which burns in a way that poo doesn’t. As all my friends and family know I have been complaining about this ever since I got home from the hospital the first time. I informed all the doctors but the best I got was that it was a result of the chemotherapy. Surely, they must have known?
Another aspect that makes me angry is the feeling I have had since the bowel operation (not the liver one which was performed excellently and caused no trouble) that the medical staff haven’t been listening to me. I felt at times as if they thought I was some neurotic woman making things up for attention. In fact, it was this factor which made me not chase up my lack of appointments as quickly as maybe I should have done.
Writing it down like this has made me realise that I’ve been made to feel as if my cancer isn’t a life threatening illness but something partly in my mind. Hard to explain unless you’ve been through the process yourself.
Like everyone I’ve known for some years that the NHS is in crisis but I still expected to get the best treatment available if the worst happened which of course it has. Nye Bevan must be turning in his grave.
Makes one wonder if these consultants had to run a business, how long would the business last before it went to the wall.
Brings to mind again what I was forced to ask a NHS consultant once – ‘What is the difference between God and a consultant?’ He didn’t know. I had to tell him ‘God doesn’t think he is a consultant.’
Thanks Joy & Colm. Don’t know if the letter will make a difference or not. For example the consultant said he was going to do my colonoscopy personally but didn’t even though I saw him around. And the appointment that’s been arranged is with his Registrar. Ever got the feeling someone might be avoiding you?
This is a great idea. Thinking of you both. You know where I am if you want/need me.
Elaine and Chris
I had no idea of what you’ve had to go through in the last year. It sounds awful. I hope your letter will make a difference. It’s so difficult to know what to say, but my thoughts are with you, and if there’s anything at all I can do, please let me know.