Louise Smith
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How a cancer diagnosis affected me

Louise Smith
Posted by
15 Jun 2017

Impact on family and friends of a cancer diagnosis....part of my Impact Day speech

Ten years ago my life was at the most settled it had been for a long while. I had decided to leave teaching a couple of years before and became a GP receptionist. My children were now young adults, and two had left home and were settled in their working lives. The youngest was due to take his GCSEs.

Then early in 2007 I started to have palpitations followed, a couple of months later, with a terrible itchy rash, then increasing breathlessness. Despite visits to my fantastic GP and various tests, plus a week long stay in hospital, I remained undiagnosed.

In November 2007 I went for a second opinion at New Cross Hospital in Wolverhampton. The cardiologist had found something on an echocardiogram which he could not explain and I was admitted immediately. Further tests were carried out that day and I was operated on a few days later.

I had an unusual presentation of Hodgkin’s Lymphoma-a huge mass which filled my chest cavity and was pressing against my heart. It was also attached to my lungs and some blood vessels. I was lucky as nothing showed in my lymph glands. I was a 51 year old woman, so not your typical Hodgkin’s Lymphoma patient.

In January 2008 I started a 6 month course of ABVD to ensure all was cleared up. Within a couple of months of finishing treatment I started to find lumps in my neck- my cancer was back.I had several regimens of treatment, during which the cancer seemed to be retreating, but then would come back again. The answer seemed to be a bone marrow transplant, but not even the six siblings tested were a match. Instead my own stem cells were harvested at Russells Hall Hospital, Dudley, in November 2008, while treatment to keep the cancer at bay continued at New Cross.

I eventually had my own stem cells transplanted at Heartlands Hospital, Birmingham in March 2009. I had radiotherapy in August of that year and since then have remained disease-free.

Impact on my family and friends

A cancer diagnosis affects people in different ways. I was just so relieved that at last someone knew what was wrong with me, that it wasn’t just in my head, and that someone was going to look after me. I went into a bit of a treatment bubble...looking after myself and my family was most important.

Some of the close male members of the family became very angry. My mother was very emotional. My younger son, who was still at home, noticed each time I started scratching, signs of another relapse. My daughter was getting married while i was undergoing ABVD. I left buying my outfit until a month before the big day, thinking I might lose some weight although I never did.

The day we went shopping I had terrible fatigue and was having to drag myself around. It was proving difficult to find an outfit for someone less than 5’ tall that didn’t have a low neckline. Eventually we found one that covered my operation scar and Hickman line, but cost more than the bride’s outfit! Up until then I had not bothered with my wig, but had brought it with me to try with my outfit.

When I put it on I burst into tears, pulled it off and flung it into the corner of the changing room. My poor daughter had to console me as I kept shouting that it did not look like me. I have some fantastic friends, in particular one group, some who worked with me when I was teaching, others whose children, nephews and nieces I had taught. We go out for meals and weekends together.

During my treatment they visited, and also tried to include me in nights out, making sure that I had a lift to and from venues, and arranging outings closer to home.Two of them took me to try on some hats they had seen in a charity shop which they thought would go with my outfit. Some of them also took me to have a make-up session before the pre-wedding dinner, and paid for me to choose some new make-up.

The wedding day was perfect, despite me having a panic attack before the ceremony, and I even made a speech. Before I was ill I played the organ every week at my local Church. I had a couple of visitors from the parish each week when I was home. I also found during this time that many friendships were strengthened. Some friends we had not seen for years made a special effort to visit from different parts of the country, and I was inundated with cards, letters and flowers.

Thank goodness for email as Gordon was able to send updates to our many friends and family, and he printed ones I had received if i was in hospital. It meant that he didn’t have to spend so much time on the phone and could relax sometimes. Our three children and son-in-law were a great support to each other and to us. We have always shared a great sense of humour, and that was especially important at this time.

I don’t remember the way I felt during treatment, as much as the laughs we had then. I was not allowed to wallow. One story is when our older son was stopping for the weekend, as he often did, and had gone to fetch the Sunday paper. He had left me making a full English breakfast for us all, but when he got back I was not feeling too great so asked him if he would finish making it. He went into the other room and in his best disgruntled voice complained to his father and brother, “Do you hear this? Just because Mum has cancer she thinks she can get out of cooking our breakfast!” Of course he took over and we all had a good laugh.

Another occasion was when my husband and I were having a conversation about funerals and I mentioned that I would like a wicker casket. He was sitting at the computer at the time, and went very quiet. I looked over to see what he was doing and he had only googled ‘wicker caskets’. He got a light slap, and then we started a conversation about what would happen if we ordered one, which finished with us imagining our postman delivering it on his back and laughing so much we had tears running down our faces. The topic that seems to come up with great regularity is the emotional effect on all of us.

Many who are now disease free have survivor guilt. I know I do, especially when I hear of a young person being treated or dying from cancer. I’ve enjoyed my life, and although I hope I will be around for a few more years, I have had more experiences than many.We have fatigue, days when we struggle to get the day started.

My younger son got very upset when he returned from school one day to find me still in my PJs, when I was starting treatment. From then on I decided I had to be downstairs before he went to school, and dressed when he returned.We have panic attacks and anxiety, especially when those blood tests and check-ups are looming.

After two years being accompanied everywhere I had to learn how to go out on my own, cope with noisy environments and cross roads, all made more terrifying as I had lost much of my hearing. Some are able to work through their treatment, or return to work in some capacity. In my case I suffered terrible depression as I had finally accepted that I was unable to return to work due to being unable to do many of the tasks I had done before.

My younger son had also moved to Manchester, and I was frustrated that my recovery seemed, to me, to be taking too long. I would burst into tears anywhere for no reason at all. It is difficult to accept that everybody else’s lives seemed to have carried on, when mine, and my long-suffering husband’s, had stopped.

My GPs were fantastic and I was on medication for a while. I was offered counselling by my consultant and GP, but in both cases there was a long waiting list. I did go to two sessions but found that I had found other ways of coping by then.

Cancer can also put a huge strain on the closest of relationships. Like any couple we have had our ups and downs and tried our best to support each other, but a prolonged period of being the main support for the family and seeing your partner change personality, as well as having to deal with more intimate problems, could have broken our relationship, as it does for one in three. Thankfully we managed to work through our problems and are an equal partnership again.