I found a lump in my groin area at the end of September 2001. I thought it was probably a hernia. But something made me go to the doctor the very next day.

After blood tests and an x-ray proved inconclusive my GP sent me to my consultant rheumatologist as I have suffered from the rheumatic condition called Ankylosing Spondylitis since 1990.

As those who have experienced cancer will know …the usual procedure of various tests followed: ultra sound, MRI and CAT scans and then finally a needle biopsy test result indicating that I had Lymphoma.

I was first told I had cancer on the 3rd of December 2001 at 10.30 in the morning. A date I will never forget as it was my brother Neal’s birthday and Mo and I had both taken the day off work to do our Xmas shopping. I had been waiting for the results of a needle biopsy for nearly 2 weeks and asked the Radiologist to phone me as soon as he got the result. He phoned as promised and told me I had Lymphoma.

I didn’t know what this was, so I asked what treatment I would receive. Chemotherapy and/or radiotherapy was the answer.

Not knowing anything about cancer and on hearing the word ‘chemotherapy’ I thought that I would die. My vague knowledge at this time was that cancer = death.

When I came off the phone I was shattered. My first thought was that I had been robbed. I would not see my son who was 18 months old at the time grow up. It seemed so cruel ….at 36 I felt I was far too young to die and that this sort of thing happened to other people not me….

I had had a bad feeling ever since Peter found the lump – I just couldn’t shake the feeling that it was something serious. I remember having conversations with a friend who is a GP. I kept asking for her assurance, saying things like – ‘Your lymph glands can enlarge for all kinds of reasons, can’t they?’ Of course, the answer to this was always yes, but at the back of my mind I think I knew that it was more than that. The hardest thing at that stage was how long everything seemed to take – and yet I know that compared to other people, Peter’s disease was diagnosed very quickly. As time went on we started hearing words like ‘biopsy’ and ‘stem cells’ – words that triggered alarm bells. Yet still we tried to convince ourselves that it was nothing serious. I think we just couldn’t face it before we knew for certain one way or another.

I stood in the kitchen as Peter took the call. He sounded very calm and so I thought maybe everything was ok after all. He finished the call and all I remember him telling me is that he had Lymphoma and that the treatment was chemotherapy and that it was cancer. I remember hugging him and just sobbing ‘this isn’t what we wanted to hear’. It seemed like the end of our world. Rory was just a baby – he wasn’t going to know his daddy and I was going to be a widow at 33. We knew nothing about Lymphoma or its survival rates. We just knew that it was cancer and that cancer killed people.

However 30 minutes after this diagnosis by phone, Mo and I went on the Internet and found out some basic facts about Lymphoma. It was clear I was not necessarily going to die from the cancer. Treatments were pretty successful and even if the disease returned at a later date, more treatment could be given.

That day I will never forget. Dark clouds and driving rain seemed symbolic. We were in total shock and were unable to talk to our parents till later that afternoon. After finishing finding some info on the internet, what next.?

What do you do when you find out you have cancer and that you and your wife are unable to see your own parents till later in the day?.

Well …..we went for a swim and a jacuzzi and then we went to the Imax cinema. It was an extremely surreal and strange day.

When we went and told my parents and brother they had obviously suspected the worst. I tried to be calm, but when I met them I broke down and hugged my Mum. Telling your Mother you have a very serious illness, which could be fatal seemed contrary to the natural order of things.

But after the emotion had subsided and the cups of tea were made. (Why do people make tea when there is crisis?) ….we were able to give them some basic facts that we had got from the internet which helped reduce the shock and make the situation look more hopeful.

Peter’s family were obviously shaken to the core, but I’ll never forget my own mum’s reaction. The whole thing seemed so cruel. We went to tell her that evening after picking Rory up from the childminder. We told her that it was Lymphoma and she hesitated, then smiled, a smile of relief, thinking it was some kind of infection, nothing serious. When we corrected her she was just devastated and kept saying she wished it were her instead

I am naturally an open person, and this has got me in trouble at times, but this way of being helped me deal with the initial shock. I told practically everyone I know what had happened and often at length. But I did find myself almost apologising to people when breaking the news, and telling them in the next breath that I was definitely going to be ok and would be fine.

Telling my daughter Natalie who was 15 and ½ was not as difficult as I had imagined. She lived with her mother and stayed with Mo and I regularly and was in her GCSE year at school so I didn’t want my Lymphoma to hinder her progress.

I sat her down and explained what Lymphoma was, what the treatment entailed, my odds of recovery, which fortunately were good, the fact that my hair would fall out and that it would be hard and I would get sick but that I would get better.

She handled it very well and through this experience the two of us became much closer. She would text me good luck every time I went in for a chemo and when I returned from the hospital. She visited Mo and I much more regularly than normal and was a great support and maybe this was because she didn’t worry on the same level as an adult would.

Unfortunately results are not always as they seem as I was diagnosed with Lymphoma on the 3rd Dec then on December 24th I was told that it looked like I was ok, as the biopsy came back non-malignant. When quizzed, my consultant haematologist was somewhat skeptical, but did say that occasionally needle biopsies can give false positive results.

Christmas that year was a very special and poignant time and we celebrated our good news with family and friends. We had been shaken to the core by the prospect of Peter facing cancer – our priorities had changed and a new perspective was thrown on our lives. We had gained a fresh insight into what was really important to us - and yet we weren’t going to have to fight the battle. I kept feeling that we had got off really very lightly.

Then came January. Peter was contacted by his surgeon’s secretary to say that he wanted to see Peter once more. Again, I had convinced myself that this was nothing to worry about. It turned out that there was a shadow on Peter’s CT scan that may just have been scar tissue from the surgery, but his surgeon said that if it was him, he would want to know for sure.

So two weeks later Peter had his second lymph node biopsy. All through this roller coaster I had myself convinced that really there was nothing to worry about, that Peter’s lymph glands had swollen for some unexplained reason and that the outcome of the second surgery would be the same as the first – non-malignant.

I was visiting Peter in hospital a couple of days after the operation when his surgeon came on his ward round. I’ll never forget his words. He asked Peter how he was and when Peter replied that he was very sore, he said there was a good reason for that, that the tumour had been very hard, that he had had to cut very deep and that his consultant haematologist would be in touch soon with regard to treatment. There was a pause, we looked at each other and Peter then asked his surgeon if he thought it was Lymphoma after all. He replied that he hoped it was, as the alternative would be a much more worrying (a sarcoma or a secondary cancer). I was devastated – this was an all time low. I just felt lost, it was almost as if the diagnosis 2nd time round was a lot harder to bear. I had psyched myself up to face cancer the first time - I was just drained of energy second time round.

We had to wait a couple of days to get the full biopsy result and when Peter’s consultant haematologist delivered the news over the phone that it was Diffuse Large B Cell Lymphoma I actually let out an internal cheer – better the devil you know and I knew we could beat this one!

As Mo has said our life during these months was a roller coaster with some big lows, highs and then lows again.

However, once my consultant haematologist was firstly satisfied that I had lymphoma and that it was a specific category which would respond to treatment, then we knew finally what to expect. I was also still fortunate that the cancer appeared to be only Stage 1A (i.e. that it was localised in one area and I still had no symptoms)

The next thing was to get an idea of what chance I had of getting into remission after I completed the treatment. As you will know Drs don’t really like to give such promises but after some pressure my consultant haematologist pronounced that based on the facts and on his experience he expected me to get there. This was important to hear and helped my resolve.

When the day for treatment arrived I was nervous. I didn’t know what to expect however part of me had been itching to get started for days, the sooner I got started the sooner I would finish the treatment. I remember looking through the calendar and working out that winter would be gone and summer would arrive when therapy was due to finish….

When the day came and it was explained to me what would happen and how long it would take, I suddenly felt I didn’t want Mo with me in the day ward. It was now just me and the drugs and the disease. I couldn’t face Mo watching the nurses pumping the chemicals into my body, particularly as I didn’t know how I would react or feel. I just wanted to be alone and anonymous, and this became a pattern which evolved throughout my treatment.

After the first treatment was finished and Mo arrived around 5.00 I was so delighted to see her and felt so glad to be alive and to be with my best friend even though I felt so utterly grim.

The day Peter started Chemotherapy was another low point for me. In many ways we had been impatient for the day to come, to get the process started. But of course, the reality was a little scarier than that. More than anything I just wanted to feel that I could help Peter through it all, ease his burden, take away some of the anguish. But at the end of the day I guess that chemotherapy is something you just need to face on your own. When it came to the day we had to wait around a bit, the pharmacy had made a mistake with the drugs or something. And Peter sent me home – he just needed to be on his own, which was fine except that that left me totally on my own too. I had taken time off work, Rory was with his child minder, my family were not expecting me to be free and were tied up doing their own things and every one of my friends that I tried to phone was out. I remember sitting in our living room and just feeling very alone & pretty miserable. I just didn’t want to be in this place – but I didn’t have anywhere else to go.

But something good comes out of everything, as it was on this day that I first lifted the phone and contacted UCF. I got speaking to Karen and she informed me about the Lymphoma Support Group. I was keen to go, as much for my benefit as for Peter’s. I was definitely feeling the need for support at this time.

During all of this my Mum was called in for a routine mammogram. Then she was called back for a re-check and it happened to be on the day of my second chemo.

This was a particularly nasty session as I had started vomiting once I had returned home that evening and this went on and on and on till the next morning when I was re-admitted for an I.V. drip with anti sickness drugs.

Anyway my Mum and Dad had been minding our wee lad whilst Mo brought me home from hospital. As I sat in bed and vomited, I knew something was not right. I finally confronted Mo once my Mum and Dad had gone home and she told me that Mum had been diagnosed with breast cancer.

It doesn’t really get more bizarre than this; me vomiting in a bucket after my second chemo treatment, whilst I learn my mum now also has cancer. I remember thinking is someone out there in the spiritual and mystical ether taking the piss?

My younger sister Laura who lived in England and was very supportive said when she found out:

‘I know I am really upset, but this is like something out of the Trisha show.’

I was 33 when Peter was diagnosed. Our little boy Rory was really still a baby, only 18 months old. We had originally thought we would have 3 or 4 kids, closely packed together. But when Rory was about 7 months old, we discovered that he has hemiplegia, a physical disability affecting the motor movements on the right side of his body. We decided to hold off on no. 2 until Rory was a bit older, to give us a bit more time to concentrate on his needs. So the realisation that Peter’s treatment would potentially leave him infertile was another big blow for me. We went to the Regional Fertility Clinic in the Royal to discuss our options and I was upset to learn that we only had a 1 in 4 chance of conceiving even with IVF. I don’t mean to sound melodramatic or ungrateful or to blow it out of proportion. I knew what was at stake and that the priority was Peter’s health first and everything else second. But it was especially hard for me to accept that even if (when) we got through all this, our lives would not return to ‘normal’, that things had changed permanently, that we might never have another child. As a woman in my early thirties, this just didn’t fit in with my life plan.

Over the past few years many of my friends have had more babies and have completed their families. It hasn’t yet happened for us and this has been hard at times. But any time I start to feel sorry for myself I remember how lucky I am to have Rory who is now 4 years old, has just started P1 and who is in the very privileged position of spending time with his daddy every day and of knowing how much he loves him.

There are times when the long weeks of chemotherapy seem to go on forever and ever. The cycle of being hit with chemicals, then gradually recovering, then being hit again, then recovering starts to drive you nuts.

But a constant during all of this time, who unintentionally acted as a central focus for my will to recover, was my little son Rory. As I mentioned he was just 18 months when I was first diagnosed and had just started to walk a few days after this.

The fact that he didn’t know what was going on and he was just an innocent little kid, gave me more perspective in handling cancer.

Because of my lymphoma I spent so much time with him during the particularly momentous times in his development. If I hadn’t had lymphoma this wouldn’t have occurred. I would have missed out on a lot and would not have had such a close relationship with my son.

My parents were a great support to Mo and me, doing practical things like looking after Rory and by just being there.

However when my Mum got ill we became the 2 sufferers in the family. This was in some ways too difficult to handle. It was hard for my Mum as she was diagnosed nearly 3 months after me. We were all worn out by dealing with me and it was very hard for my Dad. However my mum & I were able to act as kindred spirits and when I was up to it I went with her to her radiotherapy sessions.

My Mum though felt her cancer wasn’t as serious as mine. She tried to downplay it, as she didn’t have to have chemotherapy only radiotherapy.

I suppose her way of dealing with this situation was natural, as she was acting like a mother by putting her son first.

My two sisters who live in England were also a great help. I was close to my younger sister Laura, who was in her early 20s, and her help came as no surprise. My older sister Caroline was a year older than me and we had drifted apart over the years.

Lymphoma really did bring us back together. She phoned me really regularly and I remember her saying ‘This hasn’t just affected you, you know, it has affected all of us’ This really struck a chord and her unfailing support has meant we are now very close in the way we were when we were younger.

I was also fortunate to have a brother in law who was a pharmacist. Having someone ‘medical’ in the family was a great help.

He worked out various supplements to aid my immune system. These helped me as the chemo proceeded. Patrick was really affected by my illness. To see his wee sister’s husband with a serious potentially fatal illness was a great shock for him and his family.

The experience of this made an impact on Patrick and his wife Diane in a number of ways. Firstly as anyone who runs his or her own business will know it can completely engulf your life. He has now changed the way he works and sees more of his family.

He was also inspired to do some fundraising, and this needless to say was for the Ulster Cancer Foundation. His goal is to raise £10,000.

Approaching 40 he started getting into long distance running and now remarkably has run two Belfast marathons, the Lisburn half marathon and tomorrow the Great Northern Run. He will run the New York marathon this November!

There are times when the long weeks of chemotherapy seem to go on forever and ever. The cycle of being hit with chemicals, then gradually recovering, then being hit again, then recovering starts to drive you nuts.

But a constant during all of this time, who unintentionally acted as a central focus for my will to recover, was my little son Rory. As I mentioned he was just 18 months when I was first diagnosed and had just started to walk a few days after this.

The fact that he didn’t know what was going on and he was just an innocent little kid, gave me more perspective in handling cancer.

Because of my lymphoma I spent so much time with him during the particularly momentous times in his development. If I hadn’t had lymphoma this wouldn’t have occurred. I would have missed out on a lot and would not have had such a close relationship with my son.

My parents were a great support to Mo and me, doing practical things like looking after Rory and by just being there.

However when my Mum got ill we became the 2 sufferers in the family. This was in some ways too difficult to handle. It was hard for my Mum as she was diagnosed nearly 3 months after me. We were all worn out by dealing with me and it was very hard for my Dad. However my mum & I were able to act as kindred spirits and when I was up to it I went with her to her radiotherapy sessions.

My Mum though felt her cancer wasn’t as serious as mine. She tried to downplay it, as she didn’t have to have chemotherapy only radiotherapy.

I suppose her way of dealing with this situation was natural, as she was acting like a mother by putting her son first.

My two sisters who live in England were also a great help. I was close to my younger sister Laura, who was in her early 20s, and her help came as no surprise. My older sister Caroline was a year older than me and we had drifted apart over the years.

Lymphoma really did bring us back together. She phoned me really regularly and I remember her saying ‘This hasn’t just affected you, you know, it has affected all of us’ This really struck a chord and her unfailing support has meant we are now very close in the way we were when we were younger.

I was also fortunate to have a brother in law who was a pharmacist. Having someone ‘medical’ in the family was a great help.

He worked out various supplements to aid my immune system. These helped me as the chemo proceeded. Patrick was really affected by my illness. To see his wee sister’s husband with a serious potentially fatal illness was a great shock for him and his family.

The experience of this made an impact on Patrick and his wife Diane in a number of ways. Firstly as anyone who runs his or her own business will know it can completely engulf your life. He has now changed the way he works and sees more of his family.

He was also inspired to do some fundraising, and this needless to say was for the Ulster Cancer Foundation. His goal is to raise £10,000.

Approaching 40 he started getting into long distance running and now remarkably has run two Belfast marathons, the Lisburn half marathon and tomorrow the Great Northern Run. He will run the New York marathon this November!

I think that one of the things that is hardest about being the partner of a cancer patient is feeling that you have to hold it all together for the other person. You have to be strong and there are times when you just don’t feel strong. Peter described himself as being at the eye of the storm, that he had a calmness and inner peace during the period when he was undergoing treatment. He was very focussed on one thing only – beating cancer. It was different for me, as I had to try to deal with everything else as well, the practicalities of life. Plus I was just so worried about Peter – I believed he was going to get though it, but being human, there were moments when I had my doubts.

The dynamic of our relationship changed. Whereas we had always been a pretty equal couple, I now found myself becoming Peter’s carer, looking after his physical & emotional needs. I had a lot of support and was lucky in that the company I worked for gave me some unpaid leave. But I had no one to unburden myself to – my family and friends all knew Peter and so on some level or another were emotionally involved in what we were going through. Whereas in the past Peter had been my confident, my friend in need, the person who picked me up in a crisis, I now had to deal with a lot of things on my own. I remember days when I just felt like my life was spiralling out of control and when the simplest tasks – doing the housework, cooking dinner – just seemed beyond me.

I realised I was struggling and sought out help. About half way through Peter’s chemotherapy I started seeing a counsellor. To use his kind of speak he “helped me make sense of my world”. Through talking to him I realised that I didn’t have to feel bad about finding it hard, that it was hard, but that it was still ok. One thing he said to me stuck with me and will stick with me for the rest of my life. I was describing how, in contrast to how I had envisaged things, my life had changed dramatically over the period of a year and a half. My child had a disability and my husband had cancer – and that really, we were a bit of an imperfect family. He turned this round and said to me that it was when you accept imperfection that life really becomes perfect.

This has become a motto for my life and I think it is one of the really positive things that I have gained through Peter’s cancer experience. Despite what we tend to think in an age of cosmetic surgery and instant credit, where you can get what you want when you want it, many things are still way beyond our control. So I don’t have an expectation anymore that life will be easy. This is not a depressing thought – it is actually liberating because it allows me to really live in the present and take things as they come.

The day we learned that I was in remission, we spent 30 minutes grilling our consultant…particularly Mo. Obviously this was due to being reluctant to believe something was true, unless this was absolute, that it was 100%.

I was so worn out physically and mentally that I didn’t really feel much. All the months of fighting had taken their toll and whilst part of me was relieved and glad the other part of me felt strangely detached. As time went on I know that this became hard for Mo.

One of the mistakes I made was going back to work too early. By doing so I prolonged the time till I was back to something approaching ‘normality’…whatever that is.

I work in a family company and when I got ill my younger brother Neal had to deal with the shock of my cancer together with carrying on working and running the business. Despite having some good work colleagues around him, he had to take the strain all alone and it was very hard for him. I was always his big brother and our lives had for a long time been entwined. We were very close. Luckily his grit and help from friends, and an increase in alcohol consumption helped him to cope.

I asked doctors when I should go back to work, and many said there was no exact answer to this question. It depended on the person.

I had done some work when I was going through treatment though it was very hard to focus properly.

I started going back to work part-time gradually in July the month after finishing chemo. I was doing 20/25 hours a week by September/October and it proved too much. The following February I had to take time off work and then gradually build up my hours again. It is only when I got closer to my second remission anniversary that my energy levels really began to return. I took a daily siesta for well over a year from the time when I finished chemo.

This stop start had a great impact on family life. Fundamentally once the worst is over, it is natural that people then wish to move on. But I found it hard at times to establish my own new equilibrium.

Also my inability to perform properly at work, my lethargy etc all affected my mood and general disposition. I am generally an optimistic and enthusiastic person, but during this period I was very up and down.

I have much more energy once more. I am alive and am now 2 years and 3 months in remission. I have seen my Mum get better, my son go to primary school, my daughter go to university, and been able to spend a lot more time with my wife who is my best friend.

As many of you will know, it is not easy to get through cancer.

From the outside one would think that the end of the cancer journey is when you hopefully get told you are in remission, but that is not always the case.

The aftermath….picking up your life again can be much harder than the shock of discovering one has cancer and the treatment itself. But as time goes on we all start to find our own equilibrium once again…..

I have to stop myself sometimes when talking about Pete’s illness as I almost feel as if I went through it myself. I don’t mean this to sound insincere or in anyway to trivialise what many of the people in this room have been through. It’s just that when cancer touches the life of someone very close to you, then it’s inevitable that it touches yours too. I know now, over 2 years down the line, that you can’t continually live your life on the knife-edge that you do when there is so much uncertainty in the future. Gradually some of the ‘normal’ stresses and strains creep back into our lives. But a part of me has changed for good.

If I ever had any uncertainty where my priorities lay, I don’t have anymore. To use that often-quoted saying: my headstone is not going to read “Here lies Maureen McAlindon, who wishes she had spent more time at the office.” So although I would not wish it on anyone, I am glad to have learnt these things at this stage in my life.

When Ruth (Campbell, Head of Care Services - UCF) asked us to speak at this conference we were happy to do so. Preparing for today has really made us realise how far we have come, as we have had to dig deep and almost struggled to remember a lot of the detail of what we went through and to recall how we felt at the time.

You could blame this on poor memory (or Peter’s ongoing ‘chemo brain’), but I think it is actually a positive thing as it shows how much life has got back to normal, albeit a new kind of normal.

There is life after cancer. We try as far as possible to live in the present tense, and not to put things off for the future anymore.