Saturday, October 20th marked the start of International Brain Tumour Awareness Week, and to recognise this, Paula, one of our brilliant Online Community users, has agreed to share her story and experience.
Well, where to begin ... I’m single, 46 years old, and in February 2018 I saw my GP who thankfully, due to his quick thinking and concern SAVED MY LIFE! He rushed me into hospital where within 4 hours I was told I had a brain tumour, suspected to be malignant. I was immediately referred to Kings Hospital in London and rushed in to meet my surgeon who advised the tumour would be removed March 7th (I couldn’t be beforehand as there was too much swelling in my brain – they did confirm I have one, so I should be grateful for the small mercies I guess!
I remained within Medway Oncology unit for over a week, where I was treated amazingly I would like to add (I know they often receive terrible reports).
After a few days at home before my surgery, I was unfortunately taken unwell and rushed to Kings Hospital slightly earlier, however, the surgery went ahead and due to the wonders of modern technology my tumour was removed, measuring a whopping 3.5cm x 4cm x 4.5cm. My family, friends and I then deliberated on a name (and trust me, there were many which couldn't be used), but we finally decided on ‘Paddy’ as in ‘Take Me Out’ and Paddy McGuiness.
Unfortunately, a few days post-surgery I was then advised that the tumour was a grade 4 ‘glioblastoma multiforme’ – basically it’s malignant, aggressive, incurable and can come back very quickly.
After taking time to heal from the surgery, I commenced an intensive period of radiotherapy on April 16th, every Monday to Friday alongside daily chemotherapy, taken by tablet at home. Unfortunately, the chemotherapy was stopped a couple of days early as my blood platelets kept dropping below a safe level, and this has sadly continued to be the case.
I’m having to go in regularly for blood tests and meetings with my Specialist Brain Tumour Nurse and Oncologist – yes, it's a pain and it’s draining, but I think such close monitoring is a good thing, and I’m now awaiting a date for the next cycle of chemotherapy to begin – if my platelets play ball that is and rise to a safe level. My prognosis will not be further discussed until the end of treatment, so it’s a waiting game now, I’m literally living day by day.
It goes without saying that my world and that of my closest friends and family has been completely turned around. I’m losing hearing in my right ear, my short-term memory, concentration and thought process has all been affected, as has my vision, mobility and energy levels. I’ve also had to surrender my driving licence and have become completely dependent upon friends and family to support me in so many areas of my life – this has been incredibly difficult for ‘Miss Independent’.
I’ve been absolutely blown away by all the support I’ve received; the visits, messages, shopping trips, lifts etc. These have helped just as much as all the drugs and treatment I’ve received.
One of the most supportive services has been my local hospice. I attend sessions every week and feel like it’s become my ‘safe haven’. The hospice has allowed me to access hypnotherapy, reiki, chiropody and massage treatments as well as a weekly arts and crafts group I now attend. It's unbelievable that only 8 months ago I was running around the country as a social worker, and now I look forward to what we’re going to make at my group each week - without it I would be completely lost.
A very dear friend recently secured a place in a half marathon – shame she can’t bottle some of that energy up for me! She asked if I’d choose a charity to raise money for, so we agreed on Heart of Kent Hospice. I feel she’s helping me say thanks, and one of my goals is to be at the start and finish – it’s good to have goals, otherwise I’d go stir crazy!
You see, when you are faced with each day not knowing how wobbly you are going to be, how blurred your vision is going to be or what your energy levels are going to be, it's difficult to plan. All I can say is I continue to fight Paddy with all my strength, and I live each day as I can because you never know what's around the corner.
Questions about brain tumours? Why not join our brain tumours or glioblastoma multiforme brain tumour group and start a discussion today.
