Deb - Interview 30

Age at interview: 40

Age at diagnosis: 38

Brief Outline: Deb was diagnosed with acute myeloid leukaemia after developing a fever with cough and tiredness. He was treated with 5 courses of chemotherapy, intrathecal (spinal) chemotherapy and an allogenic stem cell transplant. He is in remission.

Background: Deb is a business consultant. He is married with two children aged 10. Ethnic background: Indian.

More about me...

Deb came to the UK on business for a few months but during this time he developed a cough and fever and felt tired. His GP suspected a chest infection and prescribed antibiotics. With no improvement after five days Deb returned to the GP who gave him another antibiotic and ordered a chest x-ray. Deb was still not improving so he went to Accident & Emergency. They admitted him and did blood tests and a bone marrow biopsy. He was then told he had leukaemia.

A Hickman line was inserted and treatment started the next day as any delay would have been life-threatening. Deb had four courses of chemotherapy with periods at home in between. One day he woke up at home to find his jaw had gone limp and he couldn’t speak properly or keep his food in his mouth and he lost his sense of balance. He went to the hospital where they discovered that the leukaemia had spread to his cerebrospinal fluid. He was given additional chemotherapy into his spine, which caused him a great deal of pain.

 

A bone marrow transplant was then suggested and one of Deb’s brothers was found to be a match and came over from India to donate his stem cells. The transplant was delayed while Deb had to have a fifth course of chemotherapy. Deb had found the side effects of chemotherapy worse with each successive course so this fifth one was very difficult to tolerate. He was very sick and couldn’t eat or sleep. His temperature went so high he had to be cooled down in an ice bath. He also developed a severe abdominal pain due to constipation. The transplant then went ahead, preceded by high dose chemotherapy and total body irradiation. After a month he was allowed home. He was very weak but slowly recovered his strength with the help of physiotherapy. He began working from home and later returned to his workplace full time. Deb is grateful that his employer continued to pay his full salary throughout his illness.

 

Deb and his wife received a lot of help from colleagues and the local community in looking after their children but eventually decided the children would be better off living with Deb’s parents in India, where they have remained so as not to further disrupt their schooling. Deb is not allowed to travel to India until his immune system has matured sufficiently for him to withstand vaccinations against tropical diseases.

During his chemotherapy Deb attended a business meeting; he didn't tell the client about his illness and felt uneasy about hiding his hair loss with a baseball cap.

Did any of the treatment make you lose your hair?

 

Yes, chemotherapy it started with, yeah. I was having no hair on my head.

 

What about the rest of your body?

 

Nothing there. No hair.

 

How did you feel about that?

 

I, yeah, didn’t exactly, no, well it started with like, I remember that once I joined back the office after my third chemo, there was a client meeting, there was a business meeting in a place about an hour by train from here. I went there and I was very, yeah, that was the only time I was very uneasy to face the business clients in a meeting, in a professional meeting with no hair. And I was wearing a suit and I was wearing a cap. So I could not find any other hat. I mean that was during summer so there was no winter, no cap or a winter hat or anything available in the stores. All I could find in one corner of my house is a baseball cap. So I went there and that was a time which I felt kind of weird. And I did not tell anyone neither my company or myself told the, or could tell the client that this guy is having this problem. My boss from India who was there in that meeting he told that, “You don’t have to come here. We’ll manage.” But I said, “No, no I’m okay. I can travel. I can go there. I’ll go and that will make me feel better.” So he allowed me but it was kind of weird, yeah. That was the only time which I felt. But the rest of the time in the hospital you see everybody is in the same condition so you don’t feel anything bad about it.

During an infection Deb's temperature rose dangerously high and the doctors feared he might die so they cooled him down in an ice bath.

There was a time when my temperature went up to 39 degrees Celsius and in the night nothing was working and the doctors and nurses on the night shift they were very, very upset. They were very, very worried. They called other doctors and then they decided if the temperature goes up another degree then probably this guy is going to, we won’t be able to save this guy.

 

So they were talking all this and then I was listening to everything and then I said, “So can’t you have any medicine? What the hell are you doing? So what sort of doctors you are? Don’t you have any cure?” They said they can’t. So I remember that in that time also I was literally shivering but they stripped me off and then put me on a lot of ice to reduce my temperature. It was like I was shivering, I was shouting, “Oh, I can’t.” Because I think I was literally shivering with it. They put me down and then wrapped me with an ice blanket and everything. So it happened.

Deb had a severe pain in his abdomen which doctors thought might be due to an ulcer or tumour but an MRI scan showed it was caused by constipation ' a side-effect of chemotherapy.

But that was the fifth chemo and that pre-transplant period was absolutely terrible for me. And suddenly the doctors found that there was the severe pain in my stomach and the lower belly. They took me to a different, endoscopy and other tests then there was I think an MRI scan. They couldn’t look at what exactly what it was, having a high temperature, it was continued for about two weeks, a severe pain in my stomach. Then they thought there might be some ulcer or tumours in my intestine. So a group of surgeons they visited me. My immunity was absolutely zero because I had gone through that high chemo, my white blood cell count was nil. My red blood cell I think was, my haemoglobin was very, very low and there was no platelets in my system. So during that time how to do the operation? It was very dangerous and was life threatening but fortunately the doctors some time they found out it was not something serious. It was just because of this constipation, it was a stool which got stuck in a place.

A physiotherapist helped Deb to regain his strength and fitness. He joined a gym and went swimming - it took about a year to feel normal again.

And I was still then I was very, very weak so I requested my hospital, the consultant to refer me to a physiotherapist so that I can build some strength in my lost muscles. They helped me with that. I went back to my local hospital, started undergoing a programme under this physiotherapist. The physiotherapist was also very nice. After some time I joined the local gymnasium, went for swimming and all this. It almost, it took me about six months, about a year after the transplant to regain my strength where I could start working as a normal person.

Deb did some work from home before returning to his office, which helped to prepare him mentally and prevented him worrying about his health. He was proud of what he achieved in that time.

But anyway, I just started working. I started reading books, maybe story books and also started reading what is happening in the industry. I started writing again. I started helping my company out and my colleagues who were in the project, who were in India, advising them with a lot of new concepts. So I started working from home and I found that, working, keeping myself busy it actually helped me a lot to keep my mind away from all the bad things. If you don’t do anything then probably a lot of bad dreams come, that if something happens to me what is going to happen to my daughters? What is going to happen to my wife, my parents? My parents are still alive so definitely they wouldn’t like to see their son dying when they’re alive. So all these things I kept on thinking, so rather than keeping them, those things are not kind of healthy things, which I felt, so I kept myself busy with other constructive stuff. And then once I started seeing my articles had been published in some very famous industry journals that gave me a lot of mental boost. And during that time then slowly, slowly I started recovering my strength. I kept on visiting the hospital pretty often. Then that frequency also reduced.

 

During that time there was a call from Zurich, some European conference in software architecture was being held in Zurich and they selected one of my papers to go and present there. But at that time I was pretty weak but I had a consultation with the doctors that, “I have written this paper and then I want to go and present it in Zurich in Switzerland, so is it okay?” And they had gone through some tests and they checked my health and then ultimately they decided that, “Okay, you can go.” So I and my wife went to Zurich. I presented the paper, and incidentally that paper won the grand prize of the conference. That was kind of good. And once I went and came back to the hospital, in the next visit, I told them. I called up the nurses and then the transplant centre and told them, “This is what has happened.” And they were very, very happy, and so next time when I visited the hospital they said, “We all cheered for you. It’s kind of a success for us.” I said, “Definitely I owe my life to you all.”

 

Then this thing happened then I joined full-time to my company and I started working full-time. Initially I kept on working to the local office where I could just walk from my home. Initially I used to take a cab to go to the office or a bus. And then I started walking to the office, slowly a bit, started building the strength.

After having chemotherapy injected into his spinal canal Deb experienced pain in his spine that resisted all painkillers.

They started giving my chemo immediately. Initially, it was, I think once, I think three times a week. That was a pretty high dose at a very, very quick succession. And as someone who has gone through it is also I remember that is very, another painful episode, of course not as much as a bone marrow extraction, but they drill a hole in the spinal cord and then they put the chemo. Then once they started the treatment I was having another phase of difficulty. I had a typical meningitic pain, what the doctor said to me, because a large number of leukaemic cells started dying in my system and they were rubbing against the nerve and they were almost flooded in my cerebrospinal fluid. So there was not being, I mean there was very, I don’t exactly know what they meant, I can’t remember what exactly they told, but it is something like the body sends out all these rogue cells from the cerebrospinal fluid to the blood and from that discharges out, outside the system, which is a very slow process.

 

Since there was a lot of dead cells, my nervous system was not functioning properly so I had this problem. Then I couldn’t move from my bed. If I somehow, if I could try to shift my side and then it was giving me terrible pain. The pain was at times it was so severe and so shrill pain. It was absolutely difficult. I used to start crying and then, not crying exactly, start shouting, “What the hell is happening to me?” And so long I was, “Okay, and what is it?” But the doctors they kept on injecting a lot of painkillers and then a lot of medicines for this kind of pain. And mostly nothing worked. I had to go through the pain. I couldn’t sit up. I was lying in a flat bed. I couldn’t eat. I couldn’t drink for most of the days. Most of the medicines they used to inject through my Hickman line and that was kind of a difficult thing. I mean in the night I couldn’t sleep because of that pain because I couldn’t turn. My whole spinal cord was paining like anything as if someone is hammering in my spinal cord, I mean putting some nails in my spinal cord. It was terrible.

 

So I continued like that and I remember that there used to be some days where they used to give me some medicine that is some morphine-based medicine but which even after injecting those medicines also I couldn’t get to sleep. It used to put me some slumber and then I woke up usually. And there was also a time like in the day you can take only four or five of those kind of painkillers. Now after four and five also I did not have any other option so that was a terrible time.

 

But anyway, I got over with that and after that I came back after that one is over and I went down through that cycle of this treatment that is injecting chemotherapy in my cerebrospinal fluid for another two months consecutive.