My heartfelt thanks to you for caring and being motivated to stop this cruel disease.
My wife was an outgoing, fit, active, an excellent dancer (ex dance instructor) and a vivacious lady who had a heart of gold.
In January 2009 she had a blackout and was later diagnosed with a low grade Glioma. This was treated with radiotherapy. She made a good recovery.
In February 2015 three new growth hotspots caused decreased mobility in her right leg and hand. She was given daily Lomustine which appeared to stabilise her condition.
During October 2016 her mobility became significantly worse due to the increased hotspot growth. She tried a Phase 1 trial to no avail and was given a few weeks to live as no further therapies could be offered. We started a Low Carb, High Fat, Zero sugar diet which stabilised her.
In February 2017 she was given one cycle of Temozolomide. By this time she needed a wheelchair for mobility. The therapy did appear to stabilise the disease but in March her bone marrow had been affected and she was treated with transfusions. She was very strong, determined and fit and she recovered from this. But the decision was made that no further treatment could be offered at that time. She was given 2 months to live. However, during April and May her general condition had improved such that she could walk around the home with little assistance.
By June 2017 her speech and mobility were degraded causing us all distress. I searched for any more options to try. There were none. By the end of June I had to help dress her as her right arm was numb. But she could still get up and down the stairs with my support.
During July 2017 she lost the ability to stand so I had to carry her to the toilet and back, and we made the lounge our bedroom. Also, her ability to swallow became compromised and I had to help her with her food. Her speech also degraded and she spent more time dozing. By the end of July she lost the ability to speak. Heartbreaking for us.
1st August 2017. A blessing. Penny had the inner strength to be able to enjoy her 66th birthday! An inspirational milestone achievement. During August 2017 her energy was waning and I had to help her eat her food. She choked on a small piece of melon and had to be taken to hospital. Recovered from this but I made extra sure that she ate safely. By the end of August she was sleeping most of each day and made no vocalisations at all. Very distressing for us. #
2nd September 2017. Penny no longer able to feed herself.
3rd September 2017. Penny falling asleep whilst I was feeding her.
4th September 2017. At 0600 Penny's left hand had tremors so I held it tightly and she pulled it to herself. I got up 0730. Penny did not wake up. Ever. Her daughters and I sat with her in the lounge every hour of every day making sure she was comfortable and being talked to and held. During the night time we set up a rota so that we could get some sleep with one of us always with her. This was our pleasure and honour to do but it had a huge emotional drain.
Friday 15th September 2017 at 2130 Penny passed away still in a peaceful sleep.
May she rest in peace.
We are determined to help stop this evil disease affecting others as it has affected us. No-one should suffer this in the future. Please make a donation to this cause no matter how small.
Thank you
