Jamie’s Hodgkin’s Lymphoma

Today Chemo Chic is pleased to present a moving blog by  Jamie, describing his own experience of cancer.

I quit drinking alcohol in December 2000 at the age of 33, and so began an exciting new chapter in my life. One that was full of new-found hope, of freedom from alcoholism and its rapacious consequences, of excavating buried dreams and visions. It was a new decade, a new millennium… a new me. I began taking care of my body by eating well and going to the gym. I started hanging around with sober people, sharing laughter and sadness, frustration and joy.

From the beginning of that year though,  I had begun to experience intense night sweats. I would wake in the morning and my bed would be drenched. It was like someone had thrown a bucket of water over me as I slept. I had to change my sheets daily. I had also been experiencing itchiness on my skin, particularly on my legs. A lot of this I had put down to drying out from alcohol, allergies or whatever. I never thought to visit the doctor. I have always been healthy and sporty, even through my drinking days.

One day in March 2001, I was doing my usual workout in the gym. I lifted a weight over my head and felt something snap in my lower neck. It didn’t hurt but it was a strange sensation and resulted in an immediate boggy, lumpy area  where the neck meets the collar bone. It was weird, like someone had stuffed a few small soft balls under my skin.

My initial thought was that I had pulled a muscle and I didn’t give it much attention. I was certain that it would disappear of its own accord but after a few weeks of covering my neck with turtle-necks and scarves (it was that noticeable) I began to get a little worried. Vanity was my main concern, if I’m being honest. Cancer never crossed my mind.

At dinner one night I got into a heated debate with my friend. I was expressing myself passionately when he suddenly stopped me and asked. “Jamie, what is that on your neck?” I gave him my gym story and said that it was probably a herniated muscle, not knowing if such a thing even existed.

My friend was concerned though and made me promise to visit the doctor within the week.

And so began a comedy of errors and dramas that would almost have been funny, were they not so profoundly frightening. My doctor outlined that my lumps were “interesting” and that we should begin tests to find out more, and in particular to rule out cancer. He arranged for some tests.

They began with an ultra sound scan which was inconclusive, though it did show that I had “nodes” that were larger than normal. These might be benign…or not. Further physical examinations revealed similar “lumps” under my arms, and in my groin area. It was agreed that we should extract a sample of the cells to be examined under the microscope. This procedure involved sticking a needle in the lumpy neck area and extracting some cells. It didn’t hurt, but  somehow the test was botched and the results remained inconclusive.

It was decided to remove one of the nodes entirely from my groin/leg area. I was given an appointment to go to the hospital one morning on the following week, be operated on and go home that same evening.

I arrived at the hospital and was shown to a bed to wait. The nurse left me and I noticed my file on the bed. Of course I opened it and read the contents. The words “suspected hodgkins lymphoma” jumped into my brain and sent my head into a spin. I was totally shocked. As far as I was concerned we were “ruling things out” not “suspecting” anything. I tried to contain myself. I don’t know how I did it but I settled in my bed and got stuck into my book. Denial helped, I’m sure.

A doctor came by and asked if I might let some students examine me under her supervision. I agreed, thinking it was a good thing to give something back to our wonderful National Health Service. She returned minutes later with her young team. She talked them through the examination, asked them questions. I found out that I had a swollen spleen. “And what could this indicate?” she asked. There was a silence. Nobody seemed to know. Then a young Chinese trainee doctor answered.

“Lymphoma?”

The doctor indicated that he was correct and the trainee punched the air as if he had scored a premiership goal and shouted “Yes!”

I will never forget that moment. Not only was the reality of what was happening to me beginning to dawn, but this young man was unashamedly revelling in my misfortune and showed not one iota of genuine care. I was invisible to him, just another body, little more than an animal.

I asked the doctor to take the students away and to come back alone. When she returned I quietly read her the riot act and told her that in my opinion the young man concerned should be severely reprimanded for his behaviour. She apologised.

The surgery was with local anaesthetic and a lovely Irish nurse held my hand as the doctors and nurses tugged, pulled, extracted and sewed at my upper leg. I rested for an hour or two afterwards and got the bus home. I knew lymphoma was bad, very bad. I knew people died from it all the time. My mortality was banging on the doors of my mind for the very first time. My up-till-now invincibility dead in a day.

I returned for the follow-up surgeon’s appointment days later. It was a crowded, busy waiting room. Eventually my name was called and an older man and myself both approached the surgeon’s office. What are the chances of that? Two men with the same name and surname, seeing the same surgeon on the same day at the same time. Surely a good omen, I thought, grasping at mental straws.

“We’ll see the older Jamie Gallagher first,” the nurse said, and I returned to my seat.

Eventually I entered the surgeon’s office and took a seat. It was a very brief meeting.

Surgeon:  “Well, Mr. Gallagher, what has your doctor told you?”

Me:     “He said that we hoped to rule out Hodgkins Lymphoma, I paraphrased.”

Him:   “Well I’m afraid that’s what it is.” (An almost sympathetic pause), “Now your doctor will refer you to an oncologist and you will more than likely begin chemotherapy and possibly radiotherapy, depending on the stage of the cancer.”

I can’t remember much more than that. It wasn’t that the surgeon was cruel. Just matter of fact. Objective. I was grateful to him and the hospital, yet again I felt like a number, like a faceless body, depersonalised… animalised almost. Again I took the bus home.

My life became one big appointment as things went from bad to worse. Full body scans revealed that my cancer was widespread, a stage 3. It was present in my neck, my groin, under my arms and around my aorta. Basically most of my lymph nodes were affected. Stage 4 is when the cancer goes to other organs. That remained to be seen but by this time I was learning to expect the worst from every test result.

I had a bone marrow biopsy (a hole is drilled into the back of the pelvis – sounds scarier than it actually is) to discover if the cancer was in my bones, the marrow being an organ of the lymph system. The first piece of good news in months revealed that my bone marrow was free of the disease.

By this stage I was in complete shock. I was 33 years old and thought I may never reach forty. I began to wonder if there really was a life after death and to hope that there was. It seemed a real possibility that I might die. What if that was it? What if there was nothing afterwards?  Questions way too existential for my little brain.

It was too frightening for me to look up information on my disease on the web. I feared finding more and more bad news. I knew that I had Hodgkins though, and my doctor assured me that it was a treatable cancer with a high rate of cure, though he was never encouragingly optimistic. Fortunately the two men I live with did a lot of research on my behalf and I soon learned that hodgkins is the only cancer that can be cured outright (as distinct from being kept in remission) and I was fortunate that I did not have non-hodgkins lymphoma, a much more virulent and serious illness.

Hodgkins lymphoma is a cancer that has one cell type. If the treatment works, it works entirely. Non-Hodgkins is a group of different cancer cell types. Treatment may work on four out of five cell types, for example, but not on a fifth.

And so my treatment began.  Before I started I was given steroids to increase my appetite and make me stronger in preparation for the barrage of chemicals that I would receive over the next six months on a fortnightly basis. Ironically, my body looked great because of this. I was more muscular than I had ever been, like a proper athlete. That wouldn’t last long.

I had heard nightmare stories about chemotherapy and was filled with fear before I started, but my experience was that it was far more tolerable than I had expected. After my first treatment, I knew that this was something I could get through. After the first one, I knew that I had eleven more to go, and so began the countdown to getting my life back…hopefully.

I decided not to tell many people, only close friends. It helped me to maintain a level of control over my situation. I was due to have a scan mid-way through my treatment that would reveal if it was working. At that point, I decided, I would visit my parents hopefully with good news.

I also decided that I would look as good as I could through my treatment. I wanted to be an A-student, if you like, and impress my treatment team with my attitude and demeanour. But it also helped me to maintain a fighting attitude, helped me again to feel more in control of the situation. I always dressed well going to appointments and was always groomed and fresh.

Naturally I became weaker and weaker and began losing my hair, though I never lost it entirely. Losing my eyelashes was alarming, but ultimately I didn’t care. I cut my hair short, and used fake tan to hide my ghostly pallor. Chemotherapy is a cumulative treatment that builds on itself to attack the cancer, but also attacks everything else in your body, especially white blood cells.

After a few treatments, my white blood cell count was low, but this could be raised by injection. I opted to inject myself at home rather than have yet another appointment. Again, this helped me to feel more powerful over the situation.

I was never really sick very much during the chemo. Just exhausted. After each session, I would usually get the bus home and lie down for the evening and most of the following day. I was so fortunate to have loved ones around me surrounding me with love and fellowship, and cups of tea. I smoked like there was no tomorrow.

The three month point came, and, after a scan, I was given the excellent news that the treatment was working and we were on target for a complete cure. So the finish line was in sight, life was looking good again, and I booked a flight home for Ireland, feeling like a champion.

Obviously my parents and family were shocked with my news and I was so very grateful that I was able to tell them that the doctors were confident of a full recovery. I think they were grateful that I spared them so much worry, and for me it was a good call.

On my return tests showed that my blood was very, very weak. So weak in fact, that I would need a blood transfusion, in order to complete the therapy. A scary idea, but in reality just a very dull process. It took about 4 hours to receive 3 pints of blood. The effect was amazing. I practically sprinted home. Well, not really but it gave me incredible new strength, and I couldn’t help but wonder who the wonderful person was who donated that blood.

As someone who has had chemo, I could not later donate blood, so instead I managed to persuade a dear friend to do so, and she continues to do so once a year. So I returned the blood, by proxy. That was important to me.

As Christmas approached I had my final treatments. After treatment number 9 I remember walking from the hospital to the bus, and suddenly being overcome with the urge to vomit. I couldn’t control it and puked profusely up against the wall. I will always remember the kind woman who asked me if I was ok, and me reassuring her that I wasn’t drunk, that I had just had chemo but would be fine. Funny the things that stick in your mind.

My last treatment was about a week before Christmas. By this stage I was rather thin and I think more gaunt than I cared to admit. My hair was thin, but I had dyed it blonde thinking that would look better. It didn’t. If anything it looked worse.

Christmas came and went, and in January I saw my oncologist to get my final results.

I was never so scared as I was that morning. What if it hadn’t worked? What then?

He sat me down before delivering the news. “Jamie, I’m happy to tell you that we have achieved a complete cure as a result of your treatment. The cancer is entirely gone.”

I burst into tears for the first time since the whole journey had begun. I had kept it all inside and now it came out in a torrent of tears.  I hugged and thanked my doctor and the nurses who had administered my healing. I left the hospital on air and called all my friends and family with the news. I was a champion and would live to fight another day.  I cannot describe what an incredible feeling it is to be told that you have your life back. It felt like a terrific achievement on my part too. I was proud of myself.

Of course I had check ups for the following three years, all of which were clear. The last time I went for one, they told me they did not need to check anymore.

I am one of the lucky ones I know, and I am grateful. What doesn’t kill you, I discovered, really does make you stronger. I will never be so afraid of death again, and the experience has given me a gratitude for life, even in dark days. Life is colourful and bright and to be cherished, and though I still take it for granted some times, it is never for very long. I always have the experience as a yardstick by which to measure the ups and downs of my life today.

I can honestly say it is an experience that I would not change. It is an essential part of who I am today. I survived. I am a cancer survivor and I wear that badge with pride. Though I didn’t know it at the time, it really was a very special gift. – Jamie Gallagher

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4 thoughts on “Jamie’s Hodgkin’s Lymphoma

  1. Gosh Jamie, I found your blog so helpful. I'm 38 and just about to have my last chemo for Hodgkin Lymphoma. I completely understand what you've written. I wouldn't change anything – I'm a better person for my experience of cancer. Good luck to you, Sarah.

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