A lymphoma survivor from York is sharing her story to offer hope to other patients going through a similar experience.
Alison Learwood, 52, is helping Yorkshire Cancer Research raise awareness of the disease as part of Blood Cancer Awareness Month, which takes place throughout September.
She said: “I want to make people realise that cancer isn’t always a death sentence. For me, cancer has been one of the most positive experiences I’ve ever had. I now help other patients at my local support group and I’m involved in research projects as a patient representative. I try to do whatever I can to give something back.”
Alison was diagnosed in June 2013 with diffuse large B-cell non-Hodgkin lymphoma – a cancer of the lymphatic system that develops when blood cells called lymphocytes become abnormal.
She had previously suffered from depression, and at first her symptoms were mistaken for the illness. However, after she became extremely unwell and unable to tolerate food she returned to her GP, who decided to carry out blood tests.
Alison said: “At first I agreed that it was probably just stress and depression, but as my symptoms got worse I began to worry. I felt absolutely wiped out.
“When I went back to my GP in April she examined my stomach and told me she could feel something unusual. She took blood samples, which indicated that there was something wrong with my kidneys.”
Following a second set of blood tests, Alison was admitted to hospital as an emergency. Alison’s level of creatinine, a waste product that is removed by the kidneys from the blood stream, had become dangerously high.
She said: “Even though they admitted me as an emergency, I didn’t expect to stay in hospital long so I only packed a small bag. It never once crossed my mind that I might die. It didn’t horrify me or send me into a panic. I felt relief that something was finally being done to help me.
“The doctors carried out more tests, and eventually I was told I might have lymphoma. I had to ask them to clarify whether that meant cancer, as I didn’t really know what it was at the time. To be honest, I had a lovely time in hospital. The people were lovely and we had a laugh together.”
Doctors discovered that a tumour the size of a melon had been putting pressure on Alison’s ureters, causing her kidneys to stop working properly. Alison was told she could go home while her medical team waited for the results of a biopsy. She was asked to return to hospital for a full surgical biopsy, and it was following this that they finally gave her an official diagnosis.
“They asked me to return to hospital, and I packed a bigger bag this time,” Alison says. “I had my first chemo session on my birthday. As far as birthdays go it was quite unusual. They looked after me and even gave me a birthday cake, so overall it was quite a pleasant experience.”
Alison was treated with a combination of drugs called R-CHOP, which includes four chemotherapy drugs and a monoclonal antibody drug called rituximab. She had her first round of treatment in hospital, and then underwent seven more sessions as an outpatient.
She was admitted to hospital on two more occasions; once when she became infected with shingles and a second time when she developed a urinary tract infection. She also suffered from Clostridium difficile, commonly known as C. diff, while her immune system was low.
Scans showed that the tumour was shrinking, and in December Alison was told that there were very few cancer cells left. She was assessed for radiotherapy on Christmas Eve, but in the end she was unable to undergo further treatment due to the close proximity of the tumour to her kidneys.
Despite this, all remaining cancer cells died, and in March 2014, a year after she first started experiencing symptoms, Alison was told she was in remission.
She said: “Strangely, being diagnosed with cancer gave me an opportunity to see that all my anxieties were insubstantial and not worth worrying about. This time I was genuinely unwell and there were amazing people around to look after me for a while. I could let go and focus on getting better.
“With depression, you often feel a lack of self-worth. After my cancer diagnosis, I found out that people really did care about me. The anxiety that I used to suffer has gone now.”
Alison joined the York Haematology Support Group in November 2013. She is now a regular member, attending meetings once a month at Huntington and District Working Men’s Club. The group, set up by local leukaemia survivor Carol Miller, holds talks by guest speakers and trips to research institutions.
Alison is also involved in many research projects, including a Yorkshire Cancer Research funded study led by Dr Peter Knapp, Senior Lecturer in Evidence-Based Decision Making at the University of York’s Department of Health Sciences and the Hull York Medical School, which is investigating why patients with suspected cancer do not turn up for urgent appointments.
Alison, an immigration adviser at the University of York, said: “I’ve benefitted hugely from advances in treatment and the support of medical staff. You can just go away and never think about it again, or you can get involved in some way. I know that not everybody will be as lucky as I’ve been, but I think it’s important for people to know that cancer is not always the end of the line.
“Cancer isn’t something you would wish on your worst enemy, and given the chance, I probably wouldn’t go through it again. But I decided there was no point in feeling sorry for myself. I chose to crack on with it and have as much fun as humanly possible.
“I’ve met some great people and learned a huge amount. I just enjoy life more now.”
To find out more about the York Haematology Support Group, please call Carol Miller on 01904 330705 or email firstname.lastname@example.org.
About non-Hodgkin lymphoma
- The most common symptom of non-Hodgkin lymphoma is a painless swelling in a lymph node, usually in the neck, armpit or groin. Lymph nodes, also known as lymph glands, are pea-sized lumps of tissue found throughout the body.
Other symptoms can include:
- night sweats
- unintentional weight loss
- a high temperature (fever)
- a persistent cough or feeling of breathlessness
- persistent itching of the skin all over the body
- persistent tiredness or fatigue
- an increased risk of infections
- excessive bleeding – such as nosebleeds, heavy periods and spots of blood under the skin
- Last updated: 25/09/2017
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