Carla's story

My dad was diagnosed with lung cancer and a brain tumour in July 2018. I’ll never forget hearing the news from him and how everything changed in an instant.

Once we were given the diagnosis, things seemed to go downhill really quickly. It was a hard balance to strike between trying to support dad and finding a way for me and mum to process the news ourselves.

Our family suddenly felt like a really lonely and sad place. We didn’t know what to do and we somehow felt trapped inside the walls of how dad’s diagnosis would limit him and change everything about our lives. We really needed help with what to do next. 

Carla and her parents, Su and Robert

Working at St Margaret’s, I knew that they would be able to offer help and support to my dad. At the time I didn’t realise just how much and how the help we were given wouldn’t just give hope to dad but to all of us.

Dad wasn’t initially so unwell that he needed to be in the hospice, but at the same time he was struggling at home. All of the medications, along with his mobility issues, made things really difficult. His brain tumour meant that it was hard for him to keep his balance, and his lung tumours meant that he suffered with breathlessness. I can’t imagine how scary it is to feel like you can’t breathe, but I could tell dad found it frightening and it was stopping him from doing the things he wanted to do.

Without that help, things would have been really overwhelming

When the St Margaret’s Community Nurse visited, she was able to help with dad’s medications and answer the questions mum and I had about them. She was able to see if any extra medication was needed to help him and also to talk about practical things.

Dad was referred into the hospice for physiotherapy and breathlessness support, and aids were fitted in the bathroom at home to give him the independence to shower and wash alone. He was such a proud man and I can’t describe to you how much it meant to him just to be able to do these things for himself.

Robert with a big smile on his face

Mum and dad also had help with paperwork, financial planning and signposting to other services. Whilst finances are important, it really is the last thing you want to have to focus on when you are put in this situation, so having support to get it done quickly and right was really helpful.

Sometimes the nurse from St Margaret’s would come out to see dad while mum was at work. This really set her mind at ease and gave her a chance to do something that was part of her normal routine without having to worry about dad being left on his own.

Mum also had phone calls from the nurses at the hospice several times, often to check that she was ok too. This meant that if something frightened her, or if she had a question about his medication, she always knew that there was someone she could call for support. Without that help, things would have been really overwhelming because looking after dad was a really huge responsibility. 

Carla's dad, Robert, showing off his brilliant sense of humour

As things progressed with dad, he found being ill more and more difficult and frustrating. He liked to be outdoors and active, but he was really limited by his breathlessness. It was around this time he started going in to the breathlessness clinic at the hospice and receiving support from a physiotherapist.

Dad kept his brilliant sense of humour and had us all smiling right up until the end

On the very first visit to the hospice, he was given a walker and some sticks. He was really quite stubborn at first and determined he didn’t want to use them, but when he did, it really changed things for him. The walker folded down into a seat and had a basket to carry all of his things, so he was able to get around on his own and could take a rest whenever he needed to.

With the help of the breathlessness clinic, dad was able to get his breathing under control. It was causing him so much anxiety, feeling that he wouldn’t be able to breathe properly any more. He was taught breathing exercises, which he practiced to keep himself calm and in control, and was given a fan to use as part of a technique to keep himself in control of his breathing.

A young Robert at the seaside

All of this meant that we were able to take a family trip to Weston-super-Mare. Dad was a lifelong fisherman and, although he wasn’t well enough to go on a fishing trip, he loved the sea. To be able to take him on a trip meant the world to all of us. We never thought he would be well enough to be able to walk around and enjoy the trip, but he did. It’s one of the best memories I have of spending time with dad before he died.

We spent time talking about planning ahead with the Community Nurse. Dad was really upset at the idea of us watching him die, and I had a lot of questions about what this might look like and if it would hurt for dad. It was scary and there were a lot of things I was frightened to see, but with the support of the Community Nurse we were able to talk this through and process it so that we all felt more prepared.

Mum and I know that St Margaret’s are still here for us

Carla and her dad

Dad developed some complications and was admitted to Musgrove Park Hospital, where he died in October 2018. He had worked there for many years and quite enjoyed all of the visitors he had in his final days. During this time, mum and I continued to be supported by St Margaret’s working alongside Musgrove. I called the hospice’s 24-hour adviceline just for some reassurance over the weekend because I was frightened and overwhelmed at how quickly things seemed to be happening. The reassurance I received meant that I was able to comfort dad and assure mum that although it was scary, it was normal.

Dad kept his brilliant sense of humour and had us all smiling right up until the end. Although the last year has been difficult, mum and I know that St Margaret’s are still here for us and always will be if we need someone to talk to.








 

 

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