Mark - Interview 44

Age at interview: 41

Age at diagnosis: 35

Brief Outline: Mark was diagnosed with chronic myeloid leukaemia after having various symptoms. Treatments included interferon and oral chemotherapy. A planned stem cell transplant was deferred after his blood counts improved. He is in remission but still feels unwell.

Background: Mark is a voluntary charity secretary. He is single and has no children. Ethnic background: White Welsh.

More about me...

Mark was experiencing aching limbs, tiredness, excessive sweating, headaches and breathlessness. His GP could find nothing wrong and his blood counts were normal. Some time later Mark went to the GP about an aching shoulder and had another blood test. That evening (a Friday) he was visited at home by a haematologist who examined him and gave him some tablets to take over the weekend saying he should go to the local hospital on Monday for tests. The doctor suspected chronic myeloid leukaemia and told Mark he could survive for up to five years. Mark was shocked and felt that his head was swimming all weekend. He told his family and his sister came over to be with him.
 

At hospital on the Monday he was told about all the possible treatments and was referred to a specialist hospital where he had a bone marrow biopsy and told he might only live six months. He felt physically exhausted and emotionally drained by the experience. He was put on hydroxyurea chemotherapy capsules and interferon, which he learned to inject himself. He felt ill from treatment side effects so could not work and he became depressed because of the uncertain prognosis and money worries.

 

After a while Mark’s doctors decided to try an autonomous stem cell transplant preceded by high dose chemotherapy. So he was given injections to boost his stem cells prior to harvesting them but not enough were collected. Before he could harvest more he became critically ill with influenza and spent a few days in hospital. He recovered and harvested more stem cells but was told they were not completely free of leukaemia so would only buy him time while they searched for a transplant donor. No suitable donors were found and Mark sought a second opinion from a specialist in London. Mark’s parents had offered to be tested from the outset but had been told that parents couldn’t be a match. However, later they were tested and, very unusually, Mark’s mother was found to be a match and had her stem cells harvested and frozen.

 

During this time Mark’s blood counts began to improve so the need for an immediate transplant receded. Since then Mark’s blood counts have continued to improve although he still feels unwell and has been diagnosed with chronic fatigue syndrome (also known as ME), chronic fibromyalgia and irritable bowel syndrome (IBS).

 

Mark decided to get involved with charity work and set up a local branch of Leukaemia Research with three other patients, which gives him satisfaction to know that he is helping others as well as himself. Mark has tried many forms of complementary therapies including healing and has also had counselling. He has drawn strength from the support he has received from family and friends and has adopted a positive attitude to life whilst accepting that whatever will be will be.

Although his leukaemia is in remission Mark still feels unwell; he can't be sure what is caused by the leukaemia and what is due to his other health problems.

My counts are very, very good at the moment. I was still feeling quite unwell, and one of my concerns was that - and it was a bit paradoxical – I’d go to the doctor and the doctor would say, “These counts are looking very good”, and then I would have to turn round and say, “Great, but I am experiencing this, this and this”. I began to wonder why it was perhaps that I wasn’t feeling better than I thought I should in relation to my counts, but that was because of a lot of other things. I didn’t know if that was because I was still suffering anxiety or some depression, which would then have a physical effect, which I knew was possible. But when I was diagnosed via a counsellor with the Chronic Fatigue Syndrome, which had been questioned prior to my ever being diagnosed with leukaemia which just goes to show how things go round about and how you can get confusing pictures, or confusing diagnoses, if you like. That did help to explain quite a bit, that who is to say what is causing, which ailment it is that I am suffering from. But even suffering from the Chronic Fatigue Syndrome on top of the leukaemia, I’ve got Irritable Bowel Syndrome, I’ve got lots of other health issues, it still doesn’t mean that you can’t keep going and do what you can to be positive about it.

Mark had been sceptical about complementary therapies but since his CML* diagnosis has found several beneficial; he wonders whether the healing sessions have helped to eliminate his symptoms.

Also from the very beginning I have been open to any other forms of therapy, if you like, and I have tried most of the alternative therapies, things I might have been sceptical about prior to that, but when you’re in that sort of situation you are open to any sort of suggestions. And I have tried aromatherapy, reflexology, hypnotherapy, crystal therapy, I found them all actually to be of some benefit in different ways, as well as some counselling. But also some research that was done by my parents came up with the name of a world renowned healer, and I have been visiting him since 1996, first of all every other month, but now only twice a year. And who is to say why it is that I am better at the moment. I am still here, it could be from what the doctors were doing, I was told that sometimes when you have a bad infection and you recover from it, which means your blood cells are fighting back, that can do you a lot of good. Or it may be from the healing that I am receiving, I don’t know. But whatever it is I am keeping at it to make sure that it keeps on.

Mark had much emotional support from his family and friends. He says the best thing people can do to help is to be available to listen, and to be there, even in the middle of the night.

I was very lucky that I come from a very close family, and my sister and I in particular are very close. All my friends gave me a lot of support and you really do need that at times like that. They can’t understand exactly what you are going through, they may feel helpless, but whatever sort of support they give, be it a phone call, a visit, or just a few words of encouragement, they are very, very important, they all go towards building some sort of positivity when the outlook looks really bleak.

 

I think the best thing that anybody can do to help you when you’re in this sort of situation is to listen, and that is just the best thing. You just want somebody that you can talk to at will, at length, about the most benign things, and sometimes about the most stupid thoughts that you’re having, and sometimes irrational thoughts. Because I think initially your perspective goes out of the window and certain things seem vastly more important than they really are. And I think on the initial point of diagnosis, if you are being given bad news and they are saying the outlook isn’t very good or your time period could be short, it’s the immediacy of everything that you feel as if, I was more worried about how I was going to sort everything out. How would I sort out about a will and what would happen to the house after me, and who was going to have what, and things that really speaking nobody else is thinking about except you, which is an added burden, an added worry that you don’t really need.

 

So those around you, if they are just prepared to offer words of encouragement, sympathy yes in some ways, but more positivity, support, and just the ability to listen, to let you say whatever you want to say, whether it makes sense or not. And whether they tell you, “Oh you shouldn’t be saying that”, or, “You shouldn’t think it”, or “No, you’re being stupid”, and, “Don’t be silly, you’re still going to be around”, whatever it is, just listen as a sounding board and to just be there for you.

 

It’s nice when you’ve got somebody who you know that if you did wake up in the middle of the night and you’re having some unpleasant thoughts, or you just need to hear another voice, or there’s something on your mind, that you could just ring them up, even if it’s in the middle hours of the morning and you know that’s going to be okay. And I would think that that’s the biggest help that those closest to you can give.

Mark's consultant put him in touch with another leukaemia patient; talking to someone who understood how he felt was a great comfort.

But what I did find was that when you are first diagnosed the worst part was not being able to speak to somebody who is experienced in what you are experiencing, and I found the greatest help was when I commented on this to the consultant he asked a patient who had a different form of leukaemia if they would give me a call, and this lady gave me a ring, and I felt that that was the biggest benefit of all, actually talking to somebody who knew exactly how you felt, from the point you were diagnosed, the fear, all the unknowns, the feelings of what is happening to you, going through the testing and the different treatments, because however close people are to you they are not actually in your shoes at the time and they can’t really help you in that aspect. And I found it was a great comfort talking to somebody who knew what I was going through. And I’ve in turn now done that for quite a lot of other people. A lady locally who found that she had breast cancer rang me up and said can you tell me what it is like having chemotherapy and the side effects? So it’s a good help to be able to speak to people who know exactly what you’re going through and you can support each other in a lot of ways.

Before his CML* diagnosis Mark had various symptoms including excessive sweating both at night and during the day, and shortness of breath on exercise.

It started when I was having all sorts of different symptoms' aching limbs, very tired, night sweats, day sweats, headaches, which had followed on from a period of having a bout of depression, and I thought it was still physical symptoms manifesting themselves from the psychological side. But as it went on it didn’t seem quite right, but the doctors couldn’t find anything in particular that was wrong. In December 1995 I actually asked if I could have a blood test, which they did, and they did a full blood count and nothing was found to be wrong. By August 1996 I was still getting very tired. I had been to the doctors and said about the sweating and was actually flippantly told that it was summer time and that’s to be expected. But the extent of it obviously meant more than that.

 

I was off work for 2 weeks in August 1996, and having injured my shoulder I went along to the doctors to see about it, where he gave me an examination and decided to do a full blood count, I believe because he thought it was something to do with my heart. And I had been unable to carry out any decorating that I wanted to do that week, and also my father had been in hospital having back surgery, and the cafeteria was on the top level of the hospital in [city] and I found I couldn’t get up the stairs without being totally out of breath and soaking with sweat.