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Blog Posts

8
Aug
Patient Support
From the Perspective of a Carer

At the end of last year my mum was diagnosed with bowel cancer. I can’t imagine how scary it must have been for her to be going through it, but I do know how terrified my brother and I were. All of a sudden someone who seemed fit and healthy wasn’t anymore and we had to make changes to support her.


Cancer is such an emotive word, it immediately creates fear; having a support network is so important during diagnosis and treatment, for everyone.


Working at a company like Medical Research Network I’m lucky to have a lot of people with medical knowledge and experience around me. Any words, terminology or procedures that I didn’t fully understand or that I was worried about I had people who I could ask and who would take the time to explain them to me. They were also amazing as I could speak to them about the kinds of things I should expect mum to go through and when she started chemo, if her symptoms were normal.


There were an overwhelming number of appointments at the start of mum’s treatments, CT scans, MRI scans, appointments to take bloods, to check if she was fit enough to undergo an operation, chemotherapy; and because she lives over 2 hours from me or my brother it was even harder. We all spent a lot of time trying to juggle work, personal lives and making sure there was always someone with mum during her treatment.


Pretty much all of mum’s appointments took place at one of three different hospitals which was a bit of a logistical nightmare. Making sure we could get there and more importantly get parked and still get to her appointments on time wasn’t easy (and often didn’t happen). Once she started chemotherapy we were able to go to an offsite remote unit (essentially a giant converted truck) in a retail park which gave us a lot more flexibility for travel and parking.
She was also able to have nurses come out to her house to check she was ok and answer questions she had about treatment, symptoms and just how she could go about getting on with life.


After eight months of treatment mum got the all clear last month. She’ll now be checked every 3 months for the next year to make sure she is still in remission and we can look forward to the rest of the year without having to plan for more appointments and treatment.


Of course, in all these situations the patient is the most important person in the equation, but it’s important to remember that families, friends and carers are all affected too. We all have to press pause on our lives to make sure the person going through the treatment has everything they need and that takes a toll on everyone involved. We must focus on the patient, but give a thought for the carers too, it’s not an easy journey for any of us.


For support for patients or carers the World Health Organization has a great list of groups that can help: http://www.who.int/genomics/public/patientsupport/en/

 

Posted by:
Zara Broadfield
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