Aley - Interview 37

Age at interview: 33

Age at diagnosis: 31

Brief Outline:

Aley was diagnosed with biphenotypic acute leukaemia (BAL), a mixture of myeloid and lymphoblastic leukaemias, after donating blood. He had no symptoms. Two courses of FLAG-Ida chemotherapy and an allogenic stem cell transplant put him into remission.

Background:

Aley is an administrator. He is single and has no children. Ethnic background: Pakistani.

More about me...

Aley was training to run the London marathon and was in very good health. He went to donate blood but was told there was something wrong with it and he should see his GP. The GP did a blood test and phoned him the same day to say that he should go straight to hospital where a haematologist was expecting him. He went there and was told that he may have leukaemia and he would be kept in for investigations and treatment. A bone marrow biopsy confirmed the diagnosis as biphenotypic acute leukaemia (BAL), a mixture of myeloid and lymphoblastic leukaemias.

 

Aley was started on FLAG-Ida chemotherapy and told that he would need a blood transfusion from a sibling donor. At this stage Aley had not told any of his family back in Pakistan that he was ill. He decided to keep it a secret from his father, who was ill himself, and broke the news to his brother in stages and then to his sister. Both were tested and found to be a match and it was decided that his brother would come to London to donate his stem cells.

 

Aley’s chemotherapy was administered through a Hickman line and on the first day the line started bleeding and it would not stop. The line had to be removed and he was given transfusions of platelets. He had two courses of FLAG-Ida, which worked but severely reduced his appetite and he lost a lot of weight. His replacement Hickman line became infected and delayed his transplant by two weeks. Before the transplant he had three days of total body irradiation. During this time he was fed by a tube but it came out when he vomited, so once again he went without food for a few days. He remained in hospital for a month after the transplant and was then discharged home to recover.

 

After the transplant Aley’s brother visited him again but could not stay long because their father was taken ill and he died shortly afterwards. Aley lives alone and managed with no support as he didn’t ask anything of his friends. He felt at his lowest at this time. He had a couple of infections, including shingles, which he found very painful for a month, so he was in and out of hospital. He is currently suffering from a chronic Graft Versus Host Disease which causes him very dry, itchy skin all over his body, which has not been relieved by moisturising or steroid creams. He is expecting to start ultraviolet light treatment for that soon.

 

Aley adopted a very positive attitude throughout his treatment and amazed the health professionals and his friends by making jokes and laughing a lot. His muslim faith has been a support to him and his illness experience has taught him to understand life better. Although he is in remission Aley feels unable to trust in the future.

Many of Aley's friends supported him when he was first ill but he knew that some wouldn't keep that up through his long illness; he does not resent those who drifted away.

Friends, as I said to you, I have a lot of friends, at the beginning a lot of friends used to come. They brought a lot of reassurances for you, they said, “Don’t worry about anything, don’t worry about anything, we will go through it together”, you know. But in the very beginning I knew that it’s not going to last very long, because everyone has their business, everyone has their life to lead. So I didn’t expect much. Some of my friends helped me a lot.

 

A lot of my friends did not expect me to be here with them today, to be very honest. And they are being honest with me and it’s a very good thing. One of my friends said to me that it is a very long journey. “I don’t know how many people you will find at the end of it”, because a lot of people are there in the beginning line. So I say, “No, I know, because I’m the one who has to go through all by myself.” I said, “I know it. But whoever wants to leave and who wants to join me that’s up to them. I have no grief. I have no complaints whatsoever. You will still find me, even if you join me in the middle of it, you will still find me friendly with you. I understand that”.

Aley was diagnosed with biphenotypic acute leukaemia (BAL), a mixture of myeloid and lymphoblastic leukaemias, after going to give blood. He had no symptoms.

On October 2006 I decided to donate blood. And at that time I was in very good health, I was running, I was having a very healthy diet and at that time I had intentions to run a London marathon in 2008, so that’s what I was preparing for. And I got an appointment for fifteenth of October, which was not convenient for me because it was a fasting month and as a Muslim we can’t donate blood when we are fasting. And so what I did I cancelled that appointment to 31st October. And when I went to donate blood they drew a little sample of the blood before they took it, and they put it in a kind of liquid and it’s supposed to float. And it did not float and they said the haemoglobin level was too low. And I was very embarrassed at that time because I had a very good diet, I was in a very good shape as well. And they said they had to take a sample and send it away for further investigation.

 

The next day I received a call from the blood transfusion centre and a doctor said to me that I had to go and see my GP because they found something weird in my blood. And I booked an appointment with my GP. The next day I went to see him and the doctor from the transfusion centre said that he was going to fax the report straight away. But my GP lost the report and he advised me to go and have another check up, another blood test. So I went on the following day for another blood test and on the 9th November at 7.30, I remember exactly, I was watching Channel 4 News, my doctor rang me and he said to me, ‘Whatever you are doing go to that London hospital.” So I asked him, I said, “Is anything wrong?” He said, “No, nothing is wrong, just go and see a haematologist who worked there. They are expecting you.”

 

So I put some extra clothes on because it was quite… cold. And I went to see the doctor. And I went to emergency and they asked me what is wrong and I said, “I don’t know.” And because it was a very busy A and E they didn’t like it. But to be very honest I didn’t know what was wrong. So a doctor came to see me and he asked me what I was there for. I said, “Well I don’t know. My GP asked me to come and see you.” And he said, “Well, we don’t have any record of you here.” I said, “Well, he asked me to come and see the haematologist.” Anyway, he called the haematology department and there was a junior doctor, on-call doctor or whatever they are, and she said, “Yes, we were expecting him just ask him to..” And I think she had mentioned it to the doctor that we think that he has got leukaemia. And the doctor came back and the smile he had before was gone. And he said to me, “Just have a seat and the doctor will be with you shortly.”

 

Anyway, the doctor came and she said to me that they have a suspicion that my blood is not up to a level and I might have a leukaemia.

 

And I never had any symptoms whatsoever about my leukaemia. That is very unusual because the first thing you have you have out of breath if your haemoglobin is low. That’s what I learnt later. But I was running at that time. You know, I never had that symptom. I never had any symptoms in fact.

Aley broke the news to his brother in Pakistan in stages so as to prepare the family for the bombshell of his acute leukaemia diagnosis and to protect his elderly father from the truth.

And at that time my father was poorly ill back home and he was going for his angiography on 16th of November. And I was calling him every day from my hospital bed and started asking him, “How is it doing?”, and pretending to him that I am calling him from work. I didn’t even tell my brother or my sister or no one. So my brother, and my father went for the angiography on the 16th of November and the report came back on the 18th of November and the doctor suggested that he might have to put an angioplasty for him, which would be a good idea, but apart from that everything was fine. So I said thanks God.

 

Then the following day I called my brother. He is older than me, three years older than me but we have got very good, I am tight with him, I mean we are very good friends as well. So I said to him that I think I am going to see the doctor because I’m not feeling very well. And he said, “What’s wrong?” I said, “Nothing is wrong. When I run, after five miles I feel breathless.”

 

And I never had any symptoms whatsoever about my leukaemia. That is very unusual because the first thing you have you have out of breath if your haemoglobin is low. That’s what I learnt later. But I was running at that time. I never had that symptom. I never had any symptoms in fact.

 

So he said, “Okay. Let me know what happens.” And then two days later I called him and said, “I’ve been to the doctor. I think they are asking me to go and check my blood.” He said, “Okay. How are you feeling?” I said, “I’m feeling good, how’s father?”, and this and that, you know. And at that time I already had my first cycle of FLAG-Ida and I was going through a very rough time, nausea and I stopped eating things, like that. But anyway, I never mentioned it.

 

On 28th of November I called him and he was with the family - he’s got three small kids. I said, “Can you go to a quieter place, you know, because I have to speak to you.” And then he said, “Okay.” Then he went upstairs. Then I asked him that, “Sit down”, you know, “because I need to tell you something.” He said, “I am sitting.” I said, “Okay.” I said, “Well, my blood report came and my bone marrow is not working very well.” And at that time I knew that back home they don’t have a great clue of what leukaemia is and what bone marrow is. Well that’s, I found it pressure releasing, you know, thing that if you have to, like, drop a bomb, you’d rather make them prepared that bomb is coming. So that’s why I used the things like that to make him realise that something is not good.

 

Then he asked me, “What is this?” I said, “That’s the bone marrow is the thing which makes your blood, and your red cells and your white cells.” He said, “Okay. So what’s going to happen?” I said, “Well, I think I have to be in the hospital for some time.” He said, “Is it anything serious?” Then I said, “Yeah, I have got a cancer.” And it was nothing on the other side of the phone, you know, for at least twenty seconds. And then I said, “Listen. I want you to be strong because you already have a dad poorly ill and you have a lot of responsibilities.” (My mother passed away quite some time ago.) So I said, “You have to be strong and you have to just listen to me and follow what I say to you and do not go to any corner doctor, do not go to any doctor over there and speak to them about this because I will be giving you all the reviews, all the reports and everything. What you hear from me will be the truth, and that’s it.”  Because I know back home doctors what is their mentalities. 

But anyway, so I said, “Then I have to call my sister and all.”  And he said, “Don’t call her, don’t tell her, she will die.”  I said, “Don’t worry about her.  I have to let her know, you know.”  Then I called my sister.  She’s older than me as well.  And I spoke to my brother-in-law first.  I said, “Oh, there’s something serious. I just want you to support her in this.”  And she loves me a lot, you know.  We have a very, very good, apart from one, you know, we have a very, very good family love each other.  Oh, he went to the room, you know, and he asked me what happened.  I said, “Well, this is the situation and I want you to to give, support her, you know.  And he said, “Okay.”  And then I spoke to my sister.  I told her that as well and then it was like she had started crying, that was the expected thing. 

Aley's treatment would definitely cause infertility but he was more concerned about curing the leukaemia than planning his future life; having banked his sperm comforted him.

Before you started treatment did your doctors talk to you about how it might affect your fertility?

 

Yes they did tell me and they have to store your sperm for if, because I do not have any children. I was not married as well. And that’s why they delayed the treatment for two days because they have to store the sperms. And I had an appointment with the radiologist on the 14th of February, which was Valentine’s day, and she said to me that you will not be able to be a father for the rest of your life. I said, “Well, is there any chance?” She said, “The chances are next to nil because you’re going to have full body irradiation.”

 

It didn’t affect dearly to me, it was not a very big matter at that time for me. It shouldn’t be a very big matter for anyone at that stage, because at that stage you wanted to kill the cancer within you and then think about the life. Because if you started thinking about a five year plan at that time it’s not very practical. When I told my brother he was deeply upset about it. But I said, “I still have a chance, they still have the sperm”. I said, “I can still have a family. It’s not bad, you can be positive about that.” So it does come back to my mind sometimes but you lose some, you gain some. That’s the chemotherapy.

Aley will have his white blood cells extracted and treated with UV light to counter the rash he has developed due to GVHD. His skin feels dry, itchy and tight and creams give no lasting relief.

I’ve started having this skin problem from April, May last year and I started complaining about that as well. And they didn’t take any action until last month when they have taken the sample of my skin and they sent it over and then that’s how they found out that I’ve got a chronic GVHD. And they sent me to the dermatology department, which is in another hospital, and the doctor has advised me to go through a treatment called extracorporeal photophoresis, which is a blood treatment with the UV light. So what they do, they take out your blood, put back the red cells immediately, and the white cells – lymphocytes - they treat with UV light and then they put them back. It’s a treatment done every two weeks for two days for six months in each year. And then hopefully, that’s the safest treatment, otherwise you have to take other tablets or cream or steroids or whatever, which is not very ideal.

 

Oh, I’m looking forward to that… The same thing is happening with my skin right now. It’s getting quite irritated but I’m hoping that the treatment will sort it out and it will be… They say that after treatment some people are very happy than others so probably I can get my colour back, which I have a very beautiful colour you know. And all my hairs, my skin is not supporting them, so all my hairs are falling off as well from my body, not my head, and so I hope to have them back as well. So hopefully in six months time I’ll be better than today.

 

So is your GVHD skin thing, is it like a rash? Does it itch?

 

It’s not like, you can say it’s like a rash. It’s just it’s very dry and it’s all over the body. It’s like a spots thing, like a cheetah, so I’m two different colours. In one inch you have got a darkened skin and the second inch you have a lighter skin, so it’s like that, dark and light, a contrast on the whole body. And because I had the full body irradiation and the chemotherapy it does get affected on your skin area. You do get a very, very tight skin and very, very dry skin. But on top of that because of the GVHD it’s my lymphocytes, I think, the white blood cells which support the skin are not working, so that’s why it is very itchy. Rashes, it’s not red rashes but it’s two different colours, dark and light. That’s what it is, but apart from that it’s not a very big deal, but I can’t stretch it. Now I can’t do exercise because then it hurts. I can’t go for swimming as well because I can’t stretch my hands. So it’s getting tighter and tighter around my body. It’s shrinking, so… But I’m starting the treatment in January so hopefully by the summer I’ll be able to wear sleeveless or short sleeved shirts. But right now I can’t do it because it shows off.

 

Do you put anything on it?

 

I do, I've used all the creams available on the market. All the creams, expensive to economical, whatever. The only thing I’m using is Deprobase, which is not even working. It gives me a relief for hardly ten, fifteen minutes. It’s a very, very greasy cream but it’s not working. The dermatologist gave me a steroid cream but when I put it on for a week I felt more uncomfortable so she asked me not to use it, so I stopped using it. Apart from that, that’s the safest treatment, you can say, and otherwise you have to be on steroids, and steroids have got their own side effects, you know what I mean, so you’ll become a shocker for side effects. You don’t know what’s happening, kind of thing.

Aley was single, his family were all in Pakistan and he found it difficult to deal with his illness alone; at times he felt very low and tried to speak to his GP about it but couldn't access him.

The only thing that was very, very hard for me was to go through it all by myself. I did not have any emotional support. And after the transplant I felt very low. I felt very, because I was alone, I was literally lonely, very, very, how can I explain? It’s a very hard thing to put into words, but I was left alone completely. Obviously, my family was not here and then I had to support myself, as my brother, as my sister, as a family member, in one way, and then talk to myself and tell myself to calm down and support myself.

 

In the hospital and right after the transplant for at least four months I literally had nothing to do but to lie on the bed, listen to the music maybe sometimes, but watch the ceiling of the room. I literally had nothing else, nobody to talk to. Nobody to come and ask have I eaten or not, you know, things like that. Friends, some of my friends were very good but of course you can’t put everything on someone else, so you have to be… But emotionally I did get very, very low after the transplant. I think that was a time when support would have been vital for me but of course I didn’t have support so I supported myself. Maybe it’s very easy for me to say it right now, but it was a mission. It was a very, very hard thing to do, telling myself that, “Don’t worry. I’m going to be all right”, when I know that I might not wake up tomorrow. I was so poorly, used to be very, very poorly ill. Couldn’t even go out for two minutes and I had to go out buy the groceries, come home.

 

And I went to see my GP once, on those days, and my GP was not there so I tried to book an appointment, which you can do in the NHS, you can book a next day appointment. And the receptionist said that she can’t book me. And I was feeling so helpless and so hopeless or whatever. I said, “I’ve just been transplanted.” And she said, “On the screen it doesn’t say that you have any priorities over others, you have rejoined the queue.” At that time I felt, “What should I do? Where should I go?” I said, “The tablets I take, they don’t allow me get up at 7 o’clock to give you a call and book the appointment.” I said, “I cannot get up before 10 o’clock. Your appointment system closes at 8.45”. She said, “I can’t do anything about it.”