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’s New Pussycat?

The days are getting colder, the daylight is beginning to not-so-much, creep, but it is definitely running away from us.  It was pitch black at 7.30pm yesterday.  Autumn’s definitely arriving.   You leave the house at 7.30am.  You can see the webs that the spiders have made overnight.  You can see your breath when you breathe and the air con in the car is switched onto “Sauna” settings.

And then: it warms up like you are back on holiday in the Bahamas.   It gets to 10am, you are stripping off those layers.  “Good God whose idea was it to wear a jumper and a hoodie?  And why on earth did I think tights were a good idea?”

Well played Autumn, you have us all wanting to carry around summer clothes and we just don’t know whether to wear the mittens Great Aunt Elsie gave us last year for Christmas!

One minute you think you can spot the Abombinal Snowman and the next minute, you are in the freezer aisle at Tesco’s, with the door open to their ice cream.  Then around 4.30pm, there is a sudden dip in temperature and you are rushing for your hoodie and gloves again. (I am sure that this should count for part of our 30 minute daily exercise routine)

I have had such an amazing last few months.  I count my lucky stars to be this fortunate in life.  I have made new friends and reconnected with old ones.  It has been truly wonderful.   I have learnt a lot about myself recently too, I feel so honoured to write my blogs for you all and Im genuinely still amazed that anyone reads it.

The book is coming along nicely.  Im really happy with how it is coming across and I’m sure there isn’t another book like it out there.  Unique, funny and real.  Thats how I think I would describe it. (with sooooo much swearing because sometimes only a f#ck will do) and according to a well know Indian Guru, Osho, it is the most versatile and beautiful word in the world!

Yesterday I went to a Macmillan “Living with Cancer and Beyond” event.  I can honestly say it was such a wonderful few hours, with some dear friends.  I also managed to do my HoP speech, in front of around 50 other people.  It went really well and I was honoured to be able to share it with other Cancer Sufferers.  The only thing was my bottom couldn’t stop shaking, it was like it had a mind of its own.  I shall have to work on that.

If you get the chance to go to one of these Macmillan events, please go as its such an informative morning.  There are stalls and stands with lots of information, some about free therapies and we even found some wonderful ladies who gave us some Reiki.

Only 27 days to go til I get to go to Parliament. I shall be in the Jubilee room and giving my speech on “Incurable but Treatable Cancers.”  I feel really honoured to of been asked to do this and Im really hoping that I will do myself proud and not manage a spectacular social pau faux! 😱 Time will tell.

A HUGE thank you to #Tesco who had my lovely dress made for me, so that I shall dazzle the MP’s when doing my speech. I really cannot thank them enough, I shall feel like a princess ❤️

Obviously the super snuggly #Lidl socks will be replaced by my stylish boots 😂😂 (£2.49 and they are sooooo cosy… popcorn socks)

Its nearly time for #Urologyawarenessmonth to end.  It has been my pleasure to try and help spread awareness for all things urology.  We still need to get the message out there that whatever issue you are suffering with, you don’t have to do this alone and there is help out there.  I have spent a lot of my life being embarrassed about my issues.  Please don’t be like me, get some help.

I have a PET scan on Monday, I’m not that worried as I am sure I would  know if the evil cancer was back.  So fingers crossed for yet another clear scan.  Obviously the anxiety is still there as I have to turn up early for a cannula and then there is the waiting for the radioactive stuff to go round my body.  All in all its a 4 hour round trip and then I’m confined indoors for the rest of the day. Oh! not forgetting nothing to eat and no coffee in the morning, still it will be wonderful to hear Dr S say “all clear again”

Anyways…. have a wonderful day whatever you are up too!

Love & hugs always 💜