What a Wonderful Month…

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


What a week…..

What can I say?  This week has been one of the best weeks of my cancer journey.  I was so very privileged to have been asked to write a small speech on Incurable but Treatable cancers for Macmillan’s Biggest Coffee Morning at the Houses of Parliament.  W.O.W! 😮

I am still in shock.  It was such an amazing day and despite being really nervous, I actually pulled it off and even surprised myself at how composed I was.  I really wanted to get the message out there that it isn’t all magical after treatment stops, it isn’t easy to forget that you are living with something that will kill you.

Every glorious, happy event, and moments, you have are tinged with sadness at times “Will this be my last birthday?  My last Christmas, the last time I get to celebrate New Year?”  You try as hard as you can not to live like this however it is never far from your mind.  Being able to say this In the Jubilee rooms at The Houses of Parliament was an absolute honour.  It still feels like a dream.

Being able to spread and promote awareness and the actualities of living with a terminal cancer is such privilege.  I have often wondered why I am still here?  Why haven’t I died?  Whats so special about me?  I think I now know why?  It is to help others, support others, be kind and compassionate towards others.  To make this life the BEST life I can and in serving others, I have found that.  WOW I am so fortunate to still be here. ❤️❤️

Anyways….As  I am sure you have all seen the Speech at the Houses of Parliament so I won’t waffle on too much about it. (if you haven’t where have you been lol?)   Other than really say a HUGE thank you to #Macmillan for allowing me to be there (still can’t believe it), Thank you to Lynda (the CEO of MM) Ben, Colin, Lucy….. for looking after myself, Tim and my Bestie Viv.  It was really lovely to meet everyone and if I have missed anyone out it is because this stupid brain of mine doesn’t remember a lot these days, so sorry.

Its horrid getting old isn’t it?  I think you know you are getting old when you have to “Google” how to spell words you know, you know how to spell but you just can’t remember how this very second!!!  THIS is happening a lot to me recently. 😱

Oh gosh where was I? Oh this wonderful week.. I keep watching the speech and thinking I just cannot believe that that lady standing there so confident, holding a room full of people with something she has written herself…..oh bl##dy hell thats ME!!  I just can’t believe how much I have grown, how strong I am, how funny I am?   Have you ever really sat down an thought about who you actually are??

I then held a conversation with a Lord for goodness sake.  Yes me, the foul mouthed sailor and I managed to express where my words had come from and why, without using swear words.?  OMG I just can’t believe that that is me, but it is isn’t it?

Please believe me when I write and say how overwhelming it all is and to actually be making a difference.  ITS FLIPPIN’ AMAZING! I don’t want to come across as bighearted because I’m genuinely not… Never In a million years did I ever think my life would have such a positive effect on others ❤️ this makes me happy

I had a lovely email from Colin yesterday asking me to speak at the annual “Britain Against Cancer” Conference in December….. OMG OMG OMG! OMG I am soon excited, nervous, in shock… how amazing.  What an honour.  Obviously after squealing and jumping up and down, I replied and said “Yes”.  Someone pinch me now.  He also said that he had never seen a reaction to a speech like mine… WOW… something I wrote actually had a huge effect on those people in that room.❤️

Also this week the #DyinginDignity campaign came out and I am heavily involved in this.  You are all going to be sick of the sight of me soon sorry!  So basically I want the choice on how I get to die.  I believe that we should be allowed to end our own life if our quality of life will become unbearable.  `for instance: with a terminal or life limiting illness in which we could suffer when actually.

This is hugely important to me, and to many others… please support us if you can and if you are against it, well that’s good too as this is a democracy and we are all allowed to have our own opinions.

I have just watched an advert and it was a cancer related one. I have a question… Why are we being patronised? I know they are trying to show us “cancer people” as people not as statistics but really… we aren’t all sad and upset. We aren’t all doom and gloom. More people now than ever before are living with a terminal diagnosis! Show us how we really are; laughing & joking, going to work, cleaning the loo’s because life has to go on with cancer.

Some of the adverts are so cheesy I really dislike them. Saying that I doubt I could think of anything better. Just an observation. I do love the little boy in the “Head, shoulders, cheese on toast” advert, he is a little sweetheart and I’m so glad to see a follow up advert showing that he is doing so well. ❤️

Well I think I have waffled on enough, thank you all for your lovely support and love… it makes such a wonderful difference to my life 😘

Love & hugs always 💜

Anita

#kickingcancersbutt