Ian

Ian talks about his diagnosis of Hodgkin lymphoma, the challenge of treatment and the very positive effect it had on his life. He has shared his story to support our Spring appeal so that we can achieve our goal of helping more people affected by lymphoma.

Ian with his family
 
I was diagnosed with something I knew nothing about; it was a total bolt out of the blue. As a single father, I suddenly faced huge emotional and practical challenges.
Ian

Help us give hope, care and support to people affected by lymphoma

Looking back eight years, I was 43 and working as a primary school teacher. I didn’t think too much about my health until I started to experience a strange sensation of pressure in my throat, almost as if someone had their thumb on my windpipe. 

I put off going to the doctor for as long as possible. When I did eventually get round to making an appointment, I was given a diagnosis which didn’t feel right to me. I did nothing more about it, satisfied in the knowledge that I had at least been to the doctors. ‘Job done, now just move on.’

However, a few weeks later I felt a lump on my neck near my collarbone which raised significant alarm bells in my head. I went back to my GP and saw a different doctor who referred me to an ear, nose and throat (ENT) consultant. The lump, a lymph node the size of a chicken’s egg, was removed so that a biopsy could be carried out.  

I was diagnosed with stage 3 Hodgkin lymphoma

Hodgkin lymphoma? How was it that I could be diagnosed with what transpired to be the fifth most common cancer in the UK, but yet I’d never heard of it. How was that possible?

My thoughts immediately turned to my children, who at the time were just 4, 5 and 7. I was a single parent, their mother and I having divorced a year or so earlier. We share custody, with them spending half the time with their mother and half with me. 

I now needed to address some serious, but very pragmatic issues. Is this going to kill me? (It might). Will I be able to work? (If health allows, but sadly it didn’t). How and what am I going to tell my children? (That was rather less straightforward).

In the end I decided to tell them I was poorly but made a conscious decision not to mention the ‘C’ word. My concern was that they would go to school, tell their friends ‘daddy has cancer’, only to be told ‘my grandpa had cancer. He died.’ I thought they could do without having to deal with that. So I decided to keep it to: ‘I am poorly and I am going to be given medicine that will make me worse before it makes me better.’ My 7-year-old daughter asked: ‘What’s the point of that? Doctors are supposed to make you better, not worse.’

Within four weeks of my diagnosis I was being treated with ABVD chemotherapy. I did extensive research into the potential side effects of my treatment and came to the conclusion that I would cope fine. Fatigue? I had young children, so thought I knew what that felt like, and I couldn’t imagine sickness being a problem. In my mind I planned to carry on working and that life at home would carry on as before. Little did I know!

My ability to cope with the chemo was ‘pathetic’. My body simply couldn’t cope. As well as the usual permanent nausea, heartburn, ulcers, and overwhelming pain all over my body, the delivery of the chemo caused enormous pain in my arm. As a solution to that particular issue, after an aborted attempt to have a PICC line inserted, I had a Hickman® line fitted. Whilst this relieved the pain in my arm and made the delivery of the chemo and other drugs easier, it made cuddles with my children challenging, frequently uncomfortable and often impossible. My priority very quickly became the need to protect them and keep our little unit safe from the outside.

 
Being the father I wanted to be was becoming increasingly impossible and it broke my heart to think about what they were going through.
Ian

My consultant told me very early on in the process that I would often feel like I’d been ‘hit by a truck’. She was wrong! The simplest task made me breathless. At periods during my treatment cycle any kind of movement became practically impossible. I often couldn’t get up the stairs, and felt utterly drained of all energy. My body couldn’t cope with the sickness at all. Parenting became a task of Herculean proportions. I felt utterly useless. 

I soon settled into a recognised pattern of sickness, fatigue, pain and uselessness. I felt really rough for about 7-9 days after chemo, and then slowly improved for a couple of days before having to go back for more treatment. My life became a well-rehearsed regimental cycle – hospital, chemo, feeling awful, repeat.  

Halfway through my six months (twelve sessions) of treatment my salary was reduced by half as I had reached the threshold of time off sick. This created significant insurmountable financial difficulties. I couldn’t afford to feed my children and I was twice faced with the very real prospect of eviction from my rent home. 

I was put in a position where I was forced to return to work far sooner than my consultant, and more importantly my body, was ready for. I tried to go back but felt far too ill; it was just impossible. My struggle eventually resulted in me being dismissed from my job as a primary school teacher because of my inability to perform to my usual standards as a result of the chemo and its significant aftermath.  

One of the things that I found really helped throughout the whole process was keeping a journal. I was never really someone who kept a diary, but I thought it would be something to do during my chemo sessions, so I started a journal on day one of my treatment. Initially, it served as a record of what I did and how I felt, on a scale of 1-10. I found writing things down very cathartic, and would really recommend it. It was a good way of recording my thoughts, feelings – physical and mental – and, in the absence of having anyone at home, a way of being able to vent on the bad days. 

I never regarded having cancer as a ‘battle’ or a ‘fight’, as people are often expected to. For me it was always a journey. To help with that I gave my cancer a name – Patrick. This was a journey Patrick and I would travel on together. We were inseparable. Patrick became an intrinsic and fundamental part of my life. One I was desperate to get rid of, but my companion nevertheless.

 
My life has changed, my priorities have changed, I have changed. 
Ian

As someone who has suffered from severe depression and experienced overwhelming dark thoughts for decades, I can honestly say that my lymphoma experience has been an epiphany for me. My life has changed, my priorities have changed, I have changed. There are things I just don’t worry about any more. Lymphoma had made me realise how much I have to live for, as a dad and now as a husband.

In many ways, bizarre as it may sound, having cancer was the best thing that ever happened to me. Patrick saved my life. 

It’s now 8 years since my diagnosis and I am in full remission. About two years ago, I decided to look back on my journal and it brought back all the feelings and experiences I had at the time, many of which I had forgotten. I wasn’t too sure what to do with them at first, but I decided to organise and structure my notes and a book grew from there. I took a term off work to dedicate my time to it, getting it finished and published. It took far longer than I anticipated but the result was my book - The Adventures of me and Patrick: A Cancer Journey with a Difference.

I hope that the tales of my journey with Patrick offer an honest, insightful and humorous account of the reality of cancer from someone who has lived experience. My hope has always been that reading my book may be of some benefit to those who are on their own journey or those supporting someone through the process and for those suffering with mental health issues.

Ian and Patrick have a Twitter account, set up to try and raise awareness of issues faced by people with cancer, those on their cancer journey and those facing mental health issues @MeandPatrick 

The Adventures of me and Patrick: A Cancer Journey with a Difference by Ian Fry is available on Amazon.