Anthony - Interview 16

Age at interview: 65

Age at diagnosis: 56

Brief Outline:

Anthony's wife, Martine, was diagnosed with pancreatic cancer in 2003. She was treated with chemotherapy and radiotherapy. She had more chemotherapy in 2005 and 2008. A scan found that cancer had spread to her liver. Martine died peacefully in August 2008.

Background:

Anthony is a retired education officer. He is now a part time hospital chaplain. He is a widower and has two grown up children. Ethnic background/Nationality: White British/South African.

More about me...

One day in November 2002 Anthony’s wife, Martine, felt unwell. She had pain in her abdomen, which she thought might be IBS or gall stones. Later that evening she had more severe pain, so the next week she went to see her GP. He referred Martine to the hospital for an ultrasound scan, which she had five weeks later.

 

In January 2003 Martine saw a doctor at the hospital, who told her that the scan showed that she might have a tumour. He arranged for her to have a CT scan and also a biopsy of her pancreas.

 

In February 2003 Anthony and Martine were together when they received the bad news that Martine had pancreatic cancer. The surgeon told them that the tumour had probably been there for a while and that lots of veins had grown all around it so it was impossible to operate. The tumour was situated at the head of the pancreas and was an adenocarcinoma. The result of the biopsy was a great shock to Anthony and Martine and naturally they were very upset. At first Martine felt that God must be punishing her and she felt angry about her illness. Anthony was able to reassure her that God is not like that.

 

The surgeon told them that Martine should see an oncologist, who would treat her with chemotherapy and radiotherapy. Martine did not want too much detailed information about pancreatic cancer and she did not want to know her prognosis; she just wanted to know what she should do day by day to improve her condition.

 

Martine started having chemotherapy with a drug, gemcitabine, just before the radiotherapy started. Then both treatments were given at the same time. She had 30 sessions of radiotherapy. The chemotherapy went on for about nine months. Then Martine was told that her tumour had shrunk and that her blood markers for the cancer were down.

 

Martine did not suffer any serious side effects of the chemotherapy, but it affected her blood, so quite often treatment was delayed until her blood results improved. She took an antiemetic to prevent sickness and she did not lose her hair. She did have occasional rashes on her body, and she felt very tired. Martine liked the foot massage that was offered during the sessions of chemotherapy.

 

Martine found counselling (which involved listening) quite helpful for a while, but she did not like cognitive behaviour therapy. She had tremendous support from her husband, Anthony, and from her grown up children. Anthony found it helpful to look at the forum on the website run by Pancreatic Cancer UK. Martine did not want to look at it.

 

After this treatment finished Martine found she could live a fairly normal life. She could eat most foods but did not eat large meals. She did not have to take insulin.

 

After about two and a half years, in 2005/06, Martine had to have some more chemotherapy because her blood markers were going up again. Her condition improved. In about February 2008 Martine’s blood markers rose again. In June she had more CT scans and the medical team decided to start chemotherapy again. Scans revealed that the cancer had spread to Martine’s liver, so the doctor decided she should have two types of chemotherapy. Anthony and Martine went to France for a holiday, and when she got back to the UK in August she started both types of chemotherapy. Martine had a strong reaction to the combined drugs and she got high temperatures. She was also in pain. Martine went into hospital for a few days and then went home. About two weeks later she became very ill and went into hospital again. She lost consciousness and soon afterwards she died peacefully with her family around her.

 

Martine had a wonderful funeral and cremation. The church was full of family and friends. Anthony spoke at the funeral. Martine’s ashes are in the garden at the crematorium.

 

Anthony and Martine always felt supported by the medical and nursing staff at the hospital. They found great comfort from their faith in God. They also found support from their Catholic church. Anthony’s experiences at the hospital inspired him to train as a hospital chaplain. He still grieves for Martine and misses her intensely, but her illness brought them even closer together, which he sees as a blessing. He has learnt that it is important to make the most of every moment of every day.

 

Anthony was interviewed for Healthtalk in 2010 

Anthony was with his wife when her surgeon told her the diagnosis and explained why it was not possible to operate to remove the tumour.

And then we were called in for an interview with the surgeon who said, “We’ll give you the results of everything, and the diagnosis”. As it turned out it was a fateful date; it was our 25th Wedding anniversary. But we went to the hospital together, and saw a surgeon and there was a nurse there as well. And he said that, “You’ve got cancer, and it’s pancreatic cancer. And I can confirm that it’s definite, the biopsy shows that.”

 

He was a man who wanted to explain and we were very grateful because we, neither of us had any idea, we’d not heard of pancreatic cancer before. And he drew us a picture, which was actually very useful. Because he showed how there’s a great big vein that goes through the pancreas, and that the tumour was quite, I don’t know, quite near to, reasonably substantial. And that it had been there for some while, and that lots of veins had grown all around it because it was blocking the portal vein. So he said, “You know, that means I’m afraid we cannot operate. There’s no question of it because once a tumour has got this multitude of veins around it, it’s out, it can’t be operated on anymore.”

 

And it was a complete shock that to us. And both of us, we did really didn’t know what was going on at that point. And we were quite upset and quite, quite, found it very difficult.

 

Anthony's wife, Martine, had inoperable pancreatic cancer. After the diagnosis she started chemoradiotherapy. Anthony described what it involved.

I think after that things moved fairly fast in that we were handed over to, from the surgeon to a radiologist, oncologist. And they said straightaway, “We’re going to move you to two things, you’re going to start a course of chemotherapy”, I think there’s a, there’s a drug that’s always used for, and called gemcitabine, “and also you’ll go onto radiotherapy”. 

 

And then we learnt all about the process of having planning, I think it’s called, where she had to go and have these little marks, little tattoos put on her. First when the word tattoo was used, we had visions of great big marks on her body, which she was a bit worried about, but they were only just dots actually.

 

And then she went for the planning and she had these tattoo marks so that when she was lying on the, the big machine with the radiotherapy, whatever it is, the gun, they knew exactly where to focus it so it was straight on the tumour, on the pancreas. 

 

And she never felt anything, during the sessions of radiotherapy. As the radiotherapy went on she got tireder and tireder, but how much was from the radiotherapy and how much was from the chemotherapy, we don’t know because it was joint.

 

When Anthony's wife was ill they found that travel insurance had become very expensive. When they went to France the insurance excluded illness associated with cancer.

On that, the bit that, where it always hit Martine, and we found very difficult was travel insurance. Because you do want to travel, specially if you get a terminal, a diagnosis like that and you want to go to other countries, either to see people or do a visit, to see somewhere you’ve never seen before. But you’ve been warned, the moment you apply for this, for any travel insurance, either they will refuse it straightaway when you say pancreatic cancer, or say, “Oh yes we can do that, but we need to ask you a little questionnaire.” And the questions are intrusive, like, “Is your, has your cancer been diagnosed as terminal?” And Martine, she never wanted that word. She said, “I don’t want to know that. That’s precisely what I want to block out.”, and that’s precisely what the insurance company insisted on getting an answer to. And at that point I would, or usually it was on the phone, I would say, “Can I answer on behalf of my wife?” And then they’d talk to her and say, “Is it alright if your husband answers all these questions?” And she would leave the room. And then I would do the rest of the questionnaire to, to get the insurance, because we did want to travel, and we needed the insurance in case.

 

And was it very expensive?

 

Not hugely, well we eventually took the decision not to insure for the cancer. Some of the insurance companies will say, “We will give you insurance excluding your present condition”. And because we were always going to France, and we were with either friends or family we felt confident enough to say, if suddenly she got worse we could bring her back, or we knew local people enough. So it wasn’t hugely expensive because we excluded the, the cancer from the, but if you include it, its, it was going to be very expensive indeed.

 

As a carer Anthony found it very helpful to look at internet sites such as Pancreatic Cancer UK. It was helpful to read other people's stories.

Certainly as a carer I did find it useful and found it very helpful to look on the pancreatic support sites. Clearly I hope this video will be on this one, and will be a support to people, but other ones like the Pancreatic Cancer UK, the stories on there I did find helpful. And being able to follow different people’s treatment, you felt there was a community there because as I say there’s, there’s no such thing as a Pancreatic Support group, they just don’t work, unlike breast cancer or prostate cancer, where I think they’re very important. So you do need to look to see where you will get help, and I certainly got help from them.

Anthony thought it was not necessary to keep people alive with 'extraordinary means' but his Catholic faith would not allow him to consider the option of an assisted death.

Did you ever discuss the subject of assisted dying? Because that’s been in the news a lot lately?

 

It has been in the news a lot, yes. No we didn’t. One of the things I suppose again from our Catholic faith is that it’s, assisted dying is a big ‘no’. We had discussed it in terms, because it’s always coming up on a, in other, some of the other people felt is not worth living. But this is where Martine’s friend, the one who’d been through the holocaust was such a strength to her, because she’d seen so much death, and said, “No don’t worry about that. You know, you’re dying. Make the most of the now.”

 

So yes, no we never got into a discussion. If she’d had years and years of acute pain, would we have talked about it? I think we probably would have talked about it because it’s natural, because she went through ups and downs. I mustn’t say faith always is a steady keel, it isn’t. And sometimes when the markers had gone up dramatically again, we’d go back to the Chapel and she would say, “Look I don’t think I’m on good terms with God today. We’ll leave the praying for a couple of days.” And she’d, because there’d be all these human reactions, but for those, not despair, but you know when she was really despondent, she never suffered from depression any long term. She’d get periods of great down, but just for a couple of days.

 

But you said assisted dying would be against your religious faith anyhow.

 

Yes it would, it would be, and yes, that’s right, but equally what is not against our faith is keeping alive with extraordinary means. In other words, if it’s clear that the treatment, to continue it was, is going to lead to great suffering and distress, you’re not bound to continue the treatment, you can make the decision I’ll stop the treatment.

 

Yes, and make the decision not to resuscitate as well?

 

Yes, yes exactly. As long as food and water are always available, the normal means of life, then that can, and equally we never actually had a need to discuss it, but things like morphine, painkillers, if it had reached the point that she was in such pain that she needed levels of morphine which had the other effect of shortening her life, that’s allowed as well, because there’s no intention to kill, but the treatment might hasten death and as I say that, that’s perfectly normal.

 

Anthony and his sons were with Martine when she died. They stayed with her for over an hour afterwards. The staff helped in every way.

We brought her in, A&E was very slow on Sunday nights, but she was admitted that evening, and the Monday she got sicker and sicker, and she started to go down and I got, one of my son’s was here, the other son was in, in France. And I told the son here that you know, do come, and he came, and eventually I think it was probably the Monday night, at suppertime we realised that she was really going down because they kept saying her blood, not her blood, her heart rate was going too fast now, and all sorts of things were happening. And they were saying her organs are in danger. 

 

So as it happened I had sent a text to my other son in France, and he, he made it back, he got back I think at lunchtime on the Tuesday. And at that stage her heart was racing, and she was starting to really go down, and was going in and out of consciousness, but quite peaceful, in one, in that sense. And we just sat with her, holding her hand for the rest of that afternoon. 

 

At one point you know I went and talked with the; there’d been a doctor there, an oncologist who Martine related to very well, I talked to her and she said, “You must prepare herself, I don’t think she’s going to survive this.”

 

And it was about 7 o’clock that night, she just stopped breathing, very quiet and, we’d agreed beforehand, a no, no rescuss agreement, that if her heart stopped that was it, because you know it had, it had, she’d have been through so much at that point.

 

At first they said, “Oh no she’s going to be alright,” but then they realised she was just going down and down. And so her, in the end it was very peaceful and quiet. We’d got, some friends came in, who were shocked because you know, she’d, everybody just heard, “Oh she’s back from holiday and started her treatment.” And then for most people, suddenly, Martine has died. So it was a great shock. Thank goodness the boys were there, for them I think it was the most important thing that they were holding their Mum’s hand when she died.

 

And she died peacefully.

 

And she died peacefully, that’s right. And, I mean, they gave her all the painkillers she needed.

 

When Martine died did the hospital support you?

 

Yes, when she died, in a number of ways the hospital supported us, and supported me. Perhaps the most important thing was there were a couple of nurses on duty that night, and they each took it in turn just to come in, close the door, stand there with their head bowed, and then walk out again. There was a sign of recognition that somebody has died, because we, after she died we probably spent an hour, an hour and a half in the room. We were in a room, a separate room. 

 

And then I went out and I spoke to whoever was the nurse in charge, and said, “What happens now?” And she gave me that leaflet and said, “What happens is that Martine’s body is taken down to the hospital mortuary, and then tomorrow morning, you must go to the bereavement office, and there you hand this piece of paper in, and then they give you another piece of paper.” 

 

After Martine died Anthony went to the hospital bereavement office, where a woman told him that he could go to the local authority's register office to register Martine's death.

After she died, yes. Yes, after she died, the way it works in the hospital is they give you a piece of paper which you’re to take to the bereavement office, and when you leave the room [where the person died] they bring a special kind of guard, and it goes in front of the room and you can see that it says, “Absolutely no entry.” And the nurse explained to me, the mortuary, the people from mortuary will be coming up shortly with a special trolley, and in great dignity her body will be taken down to the mortuary. So you knew that the room would be held sacred while her body was still there. And that was a comfort to me that they took such care to make sure that you know, that the dead person’s body was respected.

 

It was the next morning I went to the bereavement office and said, “Here’s the piece of paper”. And I think they knew straightaway [what had happened] because as I said, that was where I was in such tears and used up half their box of tissues. But they went through and explained the next step after that, because the certificate had been signed by a doctor that it was a natural cause of death, that there was no need for any post-mortem or anything, and that they could release the body.

 

So then I went down from the office in the hospital to the office which is in the local council buildings. And there you have to fill in some more forms and then go and see somebody. And it’s quite formal, you have to say, “I am the person reporting the death, this is my relationship with the person, this is where they died, and I affirm it’s true.” And you have to say that very formally.

 

Then you have to pay them some money, and then they say, “Go outside and wait and I’ll fill in the certificates”, because you need a number of certificates. And certainly people have said to me, and it’s advice I’ve passed on, don’t just get one death certificate you need six or seven because if there’s any insurance policies or anything to do with the transfer of the mortgage, or all those sort of practical things…. Get a death certificate to send, an original death certificate. Because then each one you buy is an original. You know there’s not just one original. But these companies don’t want photocopies, they want originals. And so to actually have originals on the buff paper, signed, is actually quite important.

 

Is that the registrar of deaths?

 

That’s right, yes. Yes that’s right. There’s the registrar, the local council registrar of deaths.

 

So they sign the formal certificates. And you can buy as many as you like of the, you know they cost six or seven pounds each I think. But it’s worth it, because very often you know each time you send them off, if you send a photocopy they’d say we have to have an original before we can activate anything on the financial front so you do need a number of those. 

 

And they [people at the register office] are very supportive too; they do know how difficult it is. Admittedly it’s one of those places, it’s like some of the wards, it’s both entry and exit because it’s also the place of registering births.