Wow, I have been blessed and have been so busy recently, so many wonderful things to look forward to and to take part in. I am so fortunate that I have been able to raise awareness of bladder cancer and Neuroendocrine cancers.
I spoke at the All Party Parlimentary Group on Cancer at the absolutely amazing Methodist Hall in Westminster. WOW such a breathtaking building, with a sweeping staircase. I felt I needed a ballgown to be able to just “float” down those stairs.
It was such a wonderful experience and a huge thank you to Macmillan for asking me to speak at the event. I really feel honoured and humbled to have taken part, and if my words just touched one person and helped to change perceptions of the incurable/terminally ill cancer patients then I think I will have done what I set out to do. (Obviously raising awareness of bladder cancer at the same time)
What made my speech so special was that My Aunt and Uncle were there too, along with Tim. I wanted to make them proud of who I am and what I am doing. I guess its a bit like when you were little and took part in the nativity and your parents came along… thats how I felt.
This month has also brought the Dying in Dignity campaign as well. Featuring Yours Truly. I know that this is a very emotive subject and that we all entitled to our own opinions and that we all have differing opinions. I fully support #assisteddying as the thought of dying a horrible painful death from cancer is just too much to bear.
The campaign has gone down well and hopefully people will see that I am just a normal person, with an incurable/terminal disease who would like to take control of my own death and to be really frank I cannot understand why the law hasn’t been passed. I do understand that safeguards need to be in place.
Im pretty happy with the responses I have received from joining this campaign and they have been mostly positive. I guess there are always going to be people who say that assisted dying is “suicide” which it is not. For me it would just give me a reassurance that in my final days/hours I won’t be sedated and kept sedated until my body dies of starvation and dehydration.
I guess to sum it the last month up, it has been informative and exciting. who knew that out of something so terrible as a terminal cancer diagnosis, something so good could happen.
Oh and let’s not forget the Daily Mail article….. I hang my head in shame!
Now… its nearly christmas and I push my focus onto my friends and family, whom I love so dearly. Im super excited this year as our son and his family are staying with us over the festive period, This means that “Nana Nita” gets lots of practise with the gorgeous Kane and Rowan.
Its also my birthday on Monday (17th) and usually I am so so so excited about it. This year, not so much and I am not sure why. Perhaps it could be that I don’t want to acknowledge that time is passing by although I really have no problem with being 48!
48…. I really cannot begin to believe that I am nearly 50… It seems just like yesterday that Ashleigh was born and I was in my 20’s and now my baby boy will be 25 on the 27th December. Where did all that time go? We blinked and life changed.
I am so so thankful to still be alive, to still be here, living and breathing and although most days I am in pain, I am having a great life. Its manageable and on the days it isn’t manageable I have pjs days. I am determined not to let any of my illnesses define who I am. I am not my illnesses.
Erythromyalgia is absolutely awful. It affects my muscles, my hands and feet, makes my skin feel like I am on fire. This is getting me down right now, hopefully we will get the medication right soon. My hand and feet swell and get red hot. They hurt to use them.
My feet also get red hot and swell, but this year we have the added bonus of having Raynauds’ as well. It seems my illnesses are contradictions of each other. So I also get numb fingers and toes but my feet feel still feel hot, its the toes and the fingers that go white and numb.
The photo below was just from getting the milk out of the fridge, my fingers turning numb and white. My palms have red splodges on them which is the erythromyalgia 😱
Last year I had chilblains too. Chilblains!! I had no idea what they were until the Consultant told me, I knew my toes hurt badly and just thought I had knocked them. Anyhoo, enough of the moaning and whinging.
I would like to say a huge thank you to you all for supporting us over the last 2 and a half years. Seems amazing to think I have lasted this long when the diagnosis wasn’t that good. Thank goodness for chemo/radiotherapy and bladder removal.
So from my family to yours….. We wish you the most Wonderful Christmas ever and a fabulous New Year.
Love & hugs always
Anita ❤️😘 XX