Meaningful activity
Focus on a few months later undergoing major surgery , finishing up with a colostomy and a temporary catheter , took some getting used to ,’ she says .
During the pandemic Linda decided to print out her stories and drop them through the letterboxes of some local , elderly people who were isolated . ‘ Some would ring and ask me to write more stories , even suggesting story titles ,’ she laughs .
‘ Eventually , a lady called Jean , aged 89 , who inspired the title , suggested putting them into a book .’
Linda says that her book was written ‘ purely for entertainment ’, but that it is based on life experiences . ‘ One story in the book sees a mature student pursue her dream to become an occupational therapist , despite the trials and tribulations of family life ,’ she says . It sounds very familiar of her own journey .
‘ They are stories that many people can identify with in everyday life : romance , holidays , residential care , fundraising and Gypsy the dog are all included in the book . Not forgetting tales featuring Sophie the occupational therapy student . Happiness and sadness are both part of the book , but that is everyday life .’
Reflecting on her original diagnosis and subsequent treatment , Linda says : ‘ The trouble is , if you get diagnosed with a rare cancer , and there are hundreds , there is very little or no reading up on it . This could be a good thing , because you put yourselves in the hands of the experts and not Google . The downside is that there is little research carried out on rare cancers .
‘ I think it helps if you have a supportive MacMillan nurse . I am very fortunate to have the support of a brilliant one . Unfortunately , not everyone has access to them .
‘ With a rare cancer diagnosis , you are unlikely to find even one person with the same diagnosis to talk to . Even if you did , you may have different treatments , depending on what stage you are diagnosed at . In my case , I just get on with living and don ’ t feel the need to dwell or look for information .’
She adds : ‘ After I got the diagnosis , the worst part was the following two weeks , which were full of scans . Waiting for the appointment , where I received the results from those scans was almost unbearable . But once the plan was set to operate , it was such a relief .
‘ Waiting for the operation , which was delayed for two weeks because of Christmas , was bearable in the daytime , but I hardly slept at night . I had never been in hospital before , apart from having children . The week before the operation it was almost like you just wanted the day to arrive .
‘ I was informed I would be in intensive care for the day after and wouldn ’ t remember anything about it , but I remember chatting to the nurse all night before being transferred to the ward the following day .
‘ Despite the nature of the operation , which left me with a permanent colostomy and a temporary catheter , I felt okay . But it was great to get home after just over a week in hospital .’
A few weeks later , during the first lockdown , Linda began five weeks of radiotherapy . ‘ There were good points ,’ she says , surprisingly , of having to have cancer treatment during a pandemic . ‘ No queues to park , no car parking charges and no hanging around . The hospital was so quiet .’
She muses : ‘ To be honest , despite life-changing surgery , I am glad to be here and try to enjoy every day .’
Linda says that she has since been informed that , because the operation was rare and very complex , it was only carried out because she ‘ had the right mindset , looked after myself and had a positive outlook ’.
Her link to the Joseph Cooper Trust stems from when her husband was chairman of Leicestershire County Council in 2014 .
‘ We met a couple , Tracy and Mark , running a stall at an event we attended ,’ she explains . ‘ Their son Joseph had passed away from cancer aged just 15 . They had set up a trust in his memory , which buys gifts and wishes for children who attend the local hospitals and hospice . The year after we met them , Mark also passed away from cancer .
‘ Since then , we have supported the trust and so it was the obvious charity to donate proceeds from the book to [ and ] the trust , like many others , suffered greatly during the pandemic with lack of funds .’
Having had a career-long clinical interest in palliative care – presenting a paper at the RCOT Annual Conference in Brighton in 2009 and having worked in community hospice care in Essex – Linda says , ‘ this has now become a bit too close to home !’
However , with the experience she has been through , she hopes in the future to use the skills she has gained over a varied career as a locum and self-employed occupational therapist to assist others in her local community , while continuing to learn from training and from others .
‘ I was not upset when told I would have to live with a permanent colostomy ,’ she says . ‘ I prefer to promote the fact that you can lead a normal independent life , despite the stigma that still surrounds having a stoma .’
She ends by reflecting : ‘ I have thoroughly enjoyed putting together my book . From writing stories for a few elderly local residents isolating during a pandemic to understanding the world of publishing and producing a book has been so interesting and therapeutic .
‘ I am now writing a second book and the first story features the Elizabeth Casson Rose . The proceeds from this will be donated to Age UK ( Leicestershire and Rutland ).’
Words TRACEY SAMUELS , talking to self-employed occupational therapist LINDA BOULTER . To find out more about the books and the charities Linda is supporting linda _ boulter @ hotmail . com
© cherrybeans via Getty Images
April 2022 OTnews 41