The diagnosis has also impacted the wider family, as they too are having to navigate the challenges that living with mesothelioma brings. Fran is a full-time teacher with a young family and is having to juggle all this whilst trying to help her parents as best she can. She has shared their story in the hope it will help others in a similar position.
“He wants to be there for as long as possible to help my mum…”
Talking to Fran, what stands out most is the fierce pride and determination of her parents to retain their independence. However, her father’s illness means he is finding it increasingly difficult to cope with the physical aspect of caring. He has cared for his wife since 2014, and she is now almost entirely dependent on him. Fran feels torn between respecting her parents’ wishes, whilst acknowledging that outside intervention is becoming increasingly unavoidable.
Part of her approach has been to throw support behind her father’s desire to have immunotherapy. Access to immunotherapy is not straightforward and Fran and her father have had an uphill battle trying to secure it. Whether or not it should be available on the NHS for most of the UK rests upon the National Institute for Health and Care Excellence (NICE). However, they have repeatedly delayed and pushed back their final decision. Fran has lost count of the number of letters and calls to MPs and doctors she has made.
The hope is that if he can get immunotherapy, they’ll be able to go on a family holiday to Majorca – a place her father has been going to for over 60 years. Chemotherapy would have made the trip too risky, but immunotherapy would make it a possibility. This would be an opportunity the family to enjoy each other’s company and make some lasting memories.
“Medical appointments suddenly doubled overnight. Just getting to them is a massive undertaking.”
Fran says that contacting Mesothelioma UK has been a real turning point. Whereas previously they had been dealing with healthcare professionals with limited mesothelioma knowledge, they now have a mesothelioma nurse specialist. Their expertise has made a real difference, for example, advice on clinical trials, something Fran had been struggling to find out about. It is also through Mesothelioma UK that Fran got support pushing for immunotherapy access, help writing letters and knowing who best to contact.
“Mesothelioma UK has been brilliant. We’ve not got a mesothelioma nurse specialist and had support and advice on pushing for immunotherapy.”
Supporting people with significant health challenges is both physically and emotionally demanding. Not wanting to ignore or remove a loved one’s autonomy is difficult to balance in the face of very real practical concerns. Ultimately though, it is this concern and understanding that makes unpaid carers, family members or friends, so special.
Fran mentions how people sometimes ask how she and her family are, but that she can tell by their reaction that they don’t really want to know the full details. Caring can be a very isolating experience. Making caring more visible as part of Carers Week can go some way to help people feel less alone and, hopefully, reach out to organisations such as Mesothelioma UK to gain support.
If you’re a carer, it’s really important that you look after yourself too. Mesothelioma UK offers dedicated resources for carers including specialist financial advisers and regular Carers’ Hour webinars. Find out how we can help here.