Leanne's 1000 Miles 2021 - ALK Positive UK

Team: 1000 Miles in 2021
Team: 1000 Miles in 2021
1000 Miles 2021 - ALK Positive UK · 1 January 2021
Hello
As if life is not crazy enough, I have decided to take on a challenge,
in 2021 I plan to run 1000 miles.
I have decided to raise money for two charities close to our hearts.
Drew and I are members of ALK Positive UK (Drew's type of cancer). This
is an invaluable forum which provides us and others a voice at pharmaceutical
forums, parliament, research, emotional and practical support during very
difficult times.
I will be also raising money for Cancer Research UK to ensure the work
they do can continue. We live in hope that one day cancer is a manageable illness
and through research and trials our hope will become a reality.
The Covid-19 pandemic has led to delays in treatment, increased deaths
and holds on research, which means raising money for a charity who supports
people living with cancer, carers and families is even more pertinent than
ever.
I am sure my feet will hurt and my legs will feel like lumps of lead
during this challenge but it will never amount to the discomfort[LM1] , pain, uncertainty and emotional roller coaster which someone living
with cancer has to deal with.
Our story so far…
Drew was unwell with a cough which would not go away, lack on energy and
chest infection like symptoms, after much encouragement he started to visit the
doctor. In May 2019 he was diagnosed with stage 4 lung cancer. It is life
limiting and at this point Drew was given six months to 2 years. The diagnosis
came as a complete shock to us as he doesn’t smoke and has not been exposed to
carcinogens. Thankfully the cancer cells have an Anaplastic lymphoma kinase
(ALK) mutation which allows for a targeted drug treatment to reduce the size of
the tumours. Drew was prescribed Alectinib which worked well but it was only 10
months before we saw progression in the cancer.
At the start of the Covid-19 lockdown we were told
the news that we had been dreading, the build-up of fluid in Drews left chest cavity was due to the cancer
progressing. To alleviate fluid in Drews chest, an indwelling chest drain was
inserted into his chest and it would likely have to stay in until December 2020.
The day after the procedure he had an allergic reaction which resulted in
blisters and swelling all over his body. During this time, we were not in a
great place. Over the coming days we drained a litre a day from his chest, whilst
waiting for the recently approved drug Lorlatanib to be prescribed. Once the
drug was prescribed, we had a nervous few months until the next CT scan as the
chances of a positive reaction was only 50%. Thankfully within a few days we
noticed a reduction in the volume of fluid being drained which was a good sign
that the drug was working. At the end of June we received good news from the CT
scan results that the tumour in his left lung has reduced. Towards the end of
July the drain had dried up which irritated the lining of Drews lung, it was
painful and prevented him from breathing properly. At the end of July 2020 we were
taken in early to have the drain removed. Since having the drain removed Drews
breathing has improved and the pain has largely gone.
Since May 2019 it has been a tough time with many
ups and downs. Without the help and support of the nurses and doctors of the
NHS, the research for new drugs and support from ALK positive a difficult time
would have been impossible for us.
One in two of us will have cancer at some point in our lives, so please
give what you can. If you would like to run with me, that would be amazing or
if you see me, cheer, toot your horn and encourage me to keep
going!
Anyone with lungs can get, cancer.
Thank you so much for your donation.
Love Leanne
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