Carol - Interview 37

Age at interview: 67

Age at diagnosis: 65

Brief Outline:

Carol was diagnosed with pancreatic cancer in 2008. She had a pyloric preserving pancreatico-duodenectomy and cholescystecomy followed by chemotherapy. Now she feels well. Her blood markers are rising but scans have not revealed a recurrence.

Background:

Carol was a nurse before she retired. She is single. Ethnic background/Nationality: White British.

More about me...

In October 2008 Carol woke up feeling sick and started projectile vomiting. It carried on so she went to see her GP. The GP took some blood and thought she had an infection so prescribed antibiotics. A few days later Carol was a bit jaundiced. She felt very tired and ill and realised that there was something seriously wrong. Carol’s poo had become pale in colour and her pee looked dark. She was not in pain, though she had some tummy pain when the doctor checked her over. She had lost weight.

 

On 1^st November Carol had a consultation with a gastroenterologist (a doctor who looks at problems with digestion). Carol was admitted to hospital for tests. She had an ultrasound scan, a CT scan and more blood tests. The next day the consultant told her that she had a tumour on the head of her pancreas, which had caused diabetes. Carol wanted more information and she felt relieved that she had a diagnosis, but she also felt shocked and very sad.

 

Carol went home for the weekend but returned to hospital the following Monday to have a stent put in her bile duct.

 

Carol went home again and then had to go to a diabetic clinic for a consultation with the diabetic nurse specialist and dietician. She was told that she would have to inject herself with insulin each day. A nurse visited her at home to see if she was managing the injection correctly.

 

Then Carol saw the surgeon, who told her that he could do an operation called a pyloric-preserving pancreatico-duodenectomy, cholecystectomy and jejunostomy artificial feeding. A small part of the pancreas would be left in place. Carol agreed to the surgery right away.

 

Carol had surgery in December 2008. She had an epidural before the operation to help with pain. The surgery went well. The surgeon said that the tumour had been grade 4 cancer. He said that it was bigger than expected and couldn't guarantee that he had removed the entire tumour, but he hoped that he had.

 

Carol recovered quickly. She had two days in the intensive care unit and then she went back to the ward. Immediately after surgery Carol was fed through her jejunostomy tube. A few days later she started eating small amounts of food by mouth. The jejunostomy tube was left in place for four weeks just in case there was seepage between the stomach and duodenum, or an infection or any other complication. Carol went home after about two weeks in hospital. Before her operation she had organised plenty of help with cleaning, washing and shopping. She felt very tired and needed to rest.

 

In January 2009 Carol started chemotherapy. She was given gemcitabine every Friday for 13 weeks, with one week without treatment. The transfusion took about half an hour. Carol took anti-sickness pills before and after each treatment. She did not feel sick but felt very, very tired. During this time she lost two stone in weight. Chemotherapy finished in May 2009.

 

In February 2009 Carol saw an endocrinologist. He told her that what was left of her pancreas had started to make insulin again so she could stop her daily injections. Carol was delighted to hear that her pancreas was working again, though at first she felt a bit nervous about stopping her insulin. However, she stopped the injections and felt fine. She takes Creon at meal times to help with digestion.

 

Carol sees her surgeon every six months and her oncologist every two to three months. Carol is a bit concerned because her blood markers are going up, which suggests there could be something wrong. However, her CT scans have not revealed any problems. Carol feels very healthy and her life is as normal as it was before she had the surgery. She walks, cycles, swims and looks after her garden.

 

Carol has had wonderful support from her family and friends. She also believes that she's had superb treatment from the doctors and nurses, all within the National Health Service.

We spoke to Carol in 2010 

Carol attended a diabetic clinic where she had advice about diet. A nurse visited her at home to make sure she knew how to inject herself with insulin.

He [the surgeon] didn’t go into any detail at that stage of what it entailed other than he; this particular surgeon did surgery on the pancreas. I didn’t want detail at that point, what, what the surgery entails, although I knew it would have been radical.

 

He then went on to explain about you know I’d always be diabetic if they did surgery, or even without surgery I’d have to have insulin, my lifestyle would be sort of vastly different from what it had previously been…

 

Then things just seemed to be moving from there, I then was sort of seen by the diabetic nurse who was amazing. Told me everything about the diabetes, about taking bloods which I did, I take my blood sugars everyday.

 

So they confirmed then that you had diabetes?

 

Yes because of the type of the position of the tumour.

 

I came home. I then had to wait for an appointment with the other consultant. I came home on the Monday, oh the Wednesday. On the following Monday I had to attend the diabetic clinic where I was met with the diabetic nurse and the dietician. And I was informed at that point I’d have to go onto insulin.

 

So I was shown how to self medicate, I had twenty units of Lantus through one injection daily, advised on the sort of foods to eat, you know I had normal food with some tweaking, you know, some diet sheets, “You must follow this, its, it’s really being sensible.” Three days after I had seen the diabetic nurse she visited me at home to observe me doing the injections,

 

Okay.

 

Which I thought was excellent.

 

It gave me confidence because it, it is a slightly overwhelming, again, suddenly you’ve got to inject yourself. And I thought, “Am I going to be diabetic for the rest of my life?” And all the consequences of being diabetic, it’s not just, it’s everything else obviously with diabetes long term one has to consider, it’s a bit daunting.

 

Carol saw her surgeon twice a year and her oncologist more often for regular check-ups. Her oncologist ordered a CT scan whenever the cancer markers in Carol's blood went up.

What sort of check-ups does he [the surgeon] do when you go and see him?

 

Physical examination, questions about how I feel and my life style.

 

Does he do a scan or anything?

 

Not my surgeon.

 

My oncologist I see every two to three months. Again it’s a good interview, a good examination with my oncology nurse present. I have bloods taken before the consultation, for cancer markers, which can be very misleading and a bit terrifying, because mine are going up and up and up and up. It’s an indicator that perhaps there is something going on, a few cells floating around, I don’t know. It’s not definitive, It’s a marker, it’s a guide. I could be just one of these people who produces these markers without anything abnormal happening. And the scans,

 

Who does the scan? The surgeon or the oncologist?

 

Oncologist.

 

The oncologist?

 

Oncology, oncology deals with all this. I’m scanned when my marker goes up.

 

Okay.

 

Nothing to see?

 

No, nothing to see. And about every two or three months,

 

Is that a CT scan?

 

Yes.

 

Carol felt tired at times but her life was almost as it was before she became ill. She 'listened to her body', took advice from her medical team, and remained active

I was prepared possibly to have a 50% of my life back, my life is almost as normal as it was when I was fit and healthy.

 

Fantastic.

 

Yes I’ve lost weight, yes my eating is not as it was, I don’t want food. I have to keep an eye on what I’m eating. I get a little bit more tired maybe, but I’ve got into the habit of having an afternoon siesta. I do a lot, I’ve continued my walking. I do cliff path walking, I can walk up to about three hours. I cycle up to about twenty miles. I swim. I’ve never pushed myself. I was not driven to do these things. It was a gradual process. You can’t push, you can’t drive. You have to listen and I know this is a cliché but truly if you do stop your body tells you exactly what to do. And I’ve listened to that implicitly. And to what my medical team has advised me, and what I know is right for me in there, in my head.

 

So could you summarise sort of how you’re feeling about life now?

 

I’m delighted to be alive. It’s been an extraordinary, extraordinary experience from the minute I was diagnosed, right through my process of treatment, whether it’s surgery, chemotherapy, the will, the need to survive, it’s been extraordinary and along that route I’ve had extraordinary people in my life, both professionals and others. They’ve always been there but you’re more aware of them. It’s been very difficult at times; it’s not been an easy road. But you get there. I got there because I wanted to get there. 

 

I needed to get there. I’m so delighted and happy, I thank God every day I’m alive and I mean that sincerely. I don’t take it for granted. I try to tweak my life a bit more efficiently.

 

I think a little bit more what I can do or can’t do, for example I’m a great lover of Egypt, I did a lot of sub aqua diving in the Red Sea. I went, returned there in December last year for a holiday. I did not risk taking that risk of diving. I’m thinking just a little bit more carefully of how I risk things in my life.

 

Carol had projectile vomiting, jaundice, pale faeces and dark urine. She was tired and had lost a stone in weight before the doctor diagnosed cancer.

Early hours of the morning I awoke feeling very nauseated and had projectile vomiting.

 

Suddenly?

 

I, that was, that was a Friday. Over the next, over the weekend I had difficulty eating, I was vomiting so obviously I just drank fluids and I had what I called baby food, like ice creams and jelly. Monday I then decided there was something quite wrong. Went to my GP, examined me, considered I had possibly some, some infection in around the area of the gall bladder, prescribed two lots of antibiotics, but before commencing those I had to go and have bloods. I had a blood profile and she phoned me back that evening to say she wanted to see me the next morning. This went on for a week. I would see her or she’d contact me for a week with my symptoms and my blood, blood profile. By the following Friday I’d started to have some jaundice, very, very faint. And my stools started to become putty colour and my urine very dark. I had no pain. I was feeling very nauseated and I was feeling very ill. And I can’t describe in detail what I mean by very ill other than I was fatigued, obviously lacking energy and generally feeling under par because normally I’m a very active, physically active person. And I realised there was something wrong.

 

I saw a consultant who was a gastroenterologist, who put me up on a drip and did various you know preliminary investigations. But people were focussing more on, not focussing more but putting a lot of emphasis on, “Was I diabetic?”

 

Well I wasn’t diabetic, but I had noticed I’d lost weight. Well I would say, regard myself as being overweight before this occurred. However I was a very fit and active sort, although I thought, you know, it didn’t really concern me that much. Lost, I started to lose a bit of weight,

 

How much weight do you think you’d lost?

 

Oh at that point, I would say I’d probably lost about a, almost a stone in a week or maybe ten days.