Penny Brohn UK

Help change life with cancer. For good

Lyndsay’s story

Lyndsay started volunteering with Penny Brohn UK's marketing department to overcome the grief of her husband, Nick's death.

I turned to the things that I knew and felt comfortable with and one of those was Penny Brohn UK.

My social confidence has returned and I now feel at ease talking, laughing and joking with others. This is as a result of the nurturing culture at Penny Brohn both within my immediate team but also the wider Penny Brohn community.

The Davis family on holiday

Getting diagnosed ... again

It was 23 December 2013 and we were attending an appointment with the Oncology consultant regarding my husband’s prostate cancer that he had been diagnosed with two years earlier. This was to be his final appointment on the basis that he was now in remission. A great Christmas present.

However, that wasn’t to be.

Towards the end of the appointment, and really just as a throw-away comment, Nick mentioned that he was looking forward to the Christmas break as he had been feeling very tired. We had put it down to the fact that he had continued to cycle to and from the hospital for his chemo appointments. He had also noticed that he had little cuts on his skin that weren’t healing and he had unexplained bruises appearing.

The consultant didn’t hesitate and immediately took bloods. We were to collect the results the next day from our GP.

The following day, Christmas Eve, 2013 – I will never forget it.

We were so unconcerned that Nick visited the GP on his own. I was busy preparing for family to arrive for Christmas. Nick returned home to tell me that he had Acute Lymphoblastic Leukaemia (ALL) and he was to be admitted straight to hospital.

The immediate hours in hospital thereafter are a little hazy as we came to terms with what we had been told. We were given lots of information, we asked endless questions, we were visited by multiple doctors doing a variety of tests and treatment was started immediately.

But one of the things I do remember is the moment I told our children. My legs collapsed from under me as I struggled to get my words out. That day changed all of our lives.

The prognosis for ALL was not in Nick’s favour. The immediate aim was to get him well enough to receive intensive chemotherapy. A PICC line was fitted. We knew little of what lay ahead, thank goodness. This was to be a very different experience from the prostate cancer.

After just over a year of chemotherapy and a multitude of illnesses, it was clear that a more aggressive approach was required. The hospital confirmed that Nick’s twin sister was a match (not necessarily the case despite being a twin) and the process to do a full bone marrow transplant (BMT) began. Whilst the medical staff outlined the risks associated with this procedure, we really had no other option if Nick was to survive, so we went ahead.

Whilst the BMT itself was pretty straightforward, the side-effects were huge as his body struggled to accept the ‘foreign’ bone marrow. Many major organs such as his lungs, his skin and his bowels were chronically affected. We remained hopeful and optimistic and the professor and his team gave us no reason to believe otherwise.

However, in November 2015 he contracted another serious lung infection but this time it proved to be fatal. Nick had survived ALL for almost two years. I no longer had a husband and my children no longer had a father.

'Penny Brohn provided a safe space during Nick's treatment'

Throughout the two years that Nick was in treatment, I was his main carer. Of course, our kids were always available and visited frequently but they were getting on with their own lives at university, etc.

He spent many hours, days and weeks in hospital often in isolation. We were keen to try to continue life as normal so I carried on going to work whilst at the same time caring for Nick when he was at home.

But one of the things I always struggled with was leaving him on his own. This was where Penny Brohn became invaluable. He would organise to visit, sometimes just for lunch, sometimes for a specific service such as a massage. Whatever it was, I could relax as I knew he was in good hands – mixing with others who were also going through their own cancer journey or talking to professionals who ‘got it’. He wasn’t alone.

I know that being a cancer patient is isolating but equally so, it is for the carer. In my case, my kids were hundreds of miles away and my husband was in hospital for the majority of time. My spare time was entirely dedicated to hospital visits, before and after work.

Penny Brohn provided a safe space to talk and relax. The doctors, nurses and staff were wonderful but they are just too busy.

Food is a big part of our family life but there were periods of time when Nick struggled to eat due to multiple mouth ulcers or he was, unusually, disinterested in eating as he had lost his sense of taste. The fantastic nutritional advice and the cooking demos were also a big attraction.

Throughout Nick’s illness I had probably been suppressing my emotions and then when he died I continued in that way, kidding myself that I was coping. I carried on working but after about six months everything got too much so I left my job.

I spent the next few months sleeping, crying and hiding from the world. Not only was I now a widow, but I had been robbed of the future we had planned together and I was completely lost.

It was as a result of intensive grief counselling that I started to rebuild and look after myself. I wanted to feel useful again but felt useless. I had difficulty making eye contact without welling up, I struggled to communicate and to make simple decisions.

I turned to the things that I knew and felt comfortable with and one of those was Penny Brohn UK.

Starting to volunteer with Penny Brohn UK

Firstly, I was fortunate enough to have time to offer.

Our experience of Penny Brohn as client and supporter had been so positive that I wanted to give something back. Having visited the National Centre on a number of occasions, I was comfortable with the calm but positive and encouraging environment which was important to me at a time when I was lacking in confidence.

I was very conscious that with the rise in the number of people affected by cancer, I could help a charity that has widespread benefit.

Despite the fact that I was just offering to volunteer, going for an interview made me pretty anxious but I needn’t have worried. I was made to feel very comfortable. The interviewing staff empathised with my situation and explained how volunteering could be mutually beneficial but were careful to check that I was emotionally ready. The reality was that the interview gave me a boost.

I volunteer one day a week in the Marketing Department where I have been given the opportunity to learn new skills. On the flip side, I can see how my skills and experience are able to make a valuable contribution to the charity.

At least of equal importance, my social confidence has returned and I now feel at ease talking, laughing and joking with others. This is as a result of the nurturing culture at Penny Brohn both within my immediate team but also the wider Penny Brohn community.

I feel truly valued and part of my team despite being only a one day a week volunteer. The whole experience has been and continues to be emotionally enhancing.

Volunteering at Penny Brohn has given me a renewed sense of achievement and purpose. It has enabled me to help others whilst at the same time feeling good about myself.

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