Stewart’s story

>>Stewart’s story
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Stewart was diagnosed with cancer shortly after his father passed away. Penny Brohn UK helped him deal with his grief and shock at being diagnosed. Stewart and his wife, Marlene, really appreciate that they can receive support together.
“I was feeling very low before coming to Penny Brohn UK but felt lifted when I arrived and it was everything I was hoping for.”

In September 2017 my father passed away. A few days later I went to my GP about a lump at the top of my hip but I didn’t get an appointment for a biopsy until November. The results of the biopsy showed that I had chronic lymphocytic leukaemia (CLL). The doctors told me that my condition was chronic but controllable. A CT scan showed that it was at stage IV as it was above and below my diaphragm.

The doctors at the hospital initially told me they would monitor my condition and that they would ‘watch and wait’. But in 2018 I had a biopsy on another lump and after it had been removed another one appeared. I went on holiday to Cornwall and found it increasingly difficult to walk around and became quite poorly.

When I came home I saw a different doctor at my three month check-up who requested another scan and biopsy. Four weeks later I returned to the hospital and saw my original doctor who said my condition had transformed to diffuse large B-cell lymphoma. The doctor prescribed six to eight sessions R-CHOP chemotherapy. The chemotherapy affected my immune system and I developed sepsis and was treated in an isolation room in hospital for four days where I was reverse barrier nursed.

By the start of 2019 I hit a real low point. The doctors said the chemotherapy wasn’t working and it was stopped after three sessions. The doctors discussed stronger chemotherapy and spinal injections. I then received an appointment at another hospital and met a new consultant who wanted to do more blood tests and a biopsy to look at my chromosomes. The results showed that I had the TP53 gene mutation which stops chemotherapy working as effectively. The cancer had not mutated to a high grade but had become more aggressive.

The new consultant at the BRI started me on a course of three tablets a day and within a fortnight they started to work and most of the external swellings I had had gone. The new tablets make me feel very tired and cause similar but lesser side-effects to the chemotherapy but I am starting to feel stronger.

After my diagnosis I went to a talk which had been organised by Macmillan. At the talk I met Dr Catherine Zollman, the Medical Director at Penny Brohn UK. Dr Zollman spoke enthusiastically about the charity and encouraged me to visit its National Centre.

I came to an Introduction at Penny Brohn UK with my wife, Marlene, and immediately found it very helpful. I was apprehensive about talking about my diagnosis and apart from talking to my three close friends I am quite private about how I am feeling. But coming to Penny Brohn helped me to open up and I also found I benefitted from listening to other people in a similar situation. I was feeling very low before coming to Penny Brohn UK but felt lifted when I arrived and it was everything I was hoping for from talking to Dr Zollman.

Marlene and I then attended the two day Living Well course at the National Centre and some of the Healthy Cooking demonstrations. I particularly like the end of these sessions where I can taste the delicious food that Victoria, one of the nutritionists, has demonstrated cooking! I have had two consultations with Eleanor, another Penny Brohn nutritionist, who was really helpful advising me about my diet. We also had a telephone consultation after I started my chemotherapy.

Penny Brohn UK has helped me deal with my grief from losing my father and the shock of my diagnosis so soon after. I have been having counselling with Katie who has helped me greatly with the emotional fallout from losing my father and having cancer. I have been able to open up about my feelings and my diagnosis. I also have a greater understanding of cancer. On one of the courses we watched a video of Dr Zollman explaining what cancer is and how our immune system works and can be supported.

Marlene and I love to visit the National Centre and walk around the gardens and have a cup of tea. I enjoy the peaceful surrounding of the gardens and the sanctuary at the centre. I am a keen photographer and have taken some beautiful photographs of the gardens throughout the seasons. Marlene also benefits from coming to Penny Brohn UK and we really appreciate that we can come together. We have also attended a chi gong session and meditation session at the National Centre.

Penny Brohn has been a huge help to me through all the stages of my cancer.

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2019-07-30T16:54:34+01:00
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