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 ūüėĪ

 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 ‚̧ԳŹūüėė XX

Im sick of this Cancer too!

At first , when you are diagnosed with any type of cancer, you will find amazing support.  People will come out of the woodwork, and send flowers and balloons to show their care. (I flipping love balloons) You will have soon much support and love, it will be mind blowing.

Once you have surpassed your ‘prognosis” people seem to think you are “cured” ¬†or in “remission” and that you don’t need any support anymore. ¬†They think you are fine. ¬†This is NOT true. ¬†It seems to get harder the longer I live. ¬†There seems to be more emotions to deal with, not only yours but your close family and friends too.

They have all been on this hellish journey with you, they all expected you to be dead by now, but you aren’t so where does that leave them? ¬† Of course they are happy that you are still alive and breathing, but this isn’t how it was supposed to be was it? ¬†What exactly is gong to happen now? ¬†“Who knows” is the answer.

We are living in limbo land, no mans land, the abyss….. You have to make some sense of it, somehow……

The Hubs is having a hard time right now, he is short tempered, he doesn’t have a lot of patience, he is struggling. ¬†Helping him to see that there is a problem has had its downfalls. ¬†He began to drink too much, even on a school night, he became someone I didn’t know as never having seen this side of him.

I would ask him what was wrong, and he honestly told me that he didn’t know, he was just enjoying ‘drinking”. ¬†I feel it was an escape for him, an escape from this never ending ¬†hell that we have found ourselves in. Too scared to plan for the future, as the future isn’t promised to me. ¬†Too frightened to speak about what was really on his mind, incase he upset me. ¬†This perpetual circle, going round and round and round….

If does seem funny, as my life is now filled with purpose and meaning. ¬†I have found my place in the world, for now. ¬†His life is not how he expected it. ¬†How do you cope with being told your wife is going to die…. and then she doesn’t? ¬†That has to mess up your mind at some point. I don’t think he is sat there with a voodoo doll and pins, and I know he is so grateful that I am still alive, it just doesn’t take way from the fact that he was told he would be spending his life on his own, the outlook was grim.

Its funny how your diagnosis can have such a traumatic affect on others. It isn’t just about me, its about everyone who knows me. ¬†Who cares for me, who loves me. And whilst some can deal with it, others can’t. ¬†I have to accept that.

I recently reconnected with a friend who I haven’t seen for over a year and a half. I always though that I had done something wrong. ¬†I hadn’t, it was that she couldn’t cope with any more sadness in her life, having lost a few members of her immediate family, and distanced herself as she didn’t think she could cope with me dying as well. ¬†It made me so sad to hear this. ¬†She had to do what was right for herself and I totally understand her reasons.

So back to the Hubs.. he reached out to his boss, and is waiting for counselling. ¬†It seems silly that I’m doing ok at the moment, and he falls apart now. ¬†Yet for two and a half years he has remained strong, he has remained at my side. ¬†Through all the health issues, the Raynaud’s, the Erythromyalgia, the moderate heart failure, the pancreas and the liver not playing nice, these are all reminders that Im not well. ¬†These all impair my life, which in turn affect his life.

We have the reminders that the cancer WILL come back, small cell is sneaky, fast growing and aggressive. ¬†The PET scans every 3 months so that when it does come back, we can jump on it fast. ¬† My stoma and bag serve as a reminder of what we have both been though. ¬†I cannot imagine what it must of been like for the Hubs, having to watch me go through something that he couldn’t help with.

One thing that I am so grateful for is that we talk. ¬†It may take some time but we do eventually get there. ¬†He is able to tell me how he feels, how helpless and lost he feels. How it isn’t fair.

Cancer isn’t fair! ¬†We look to the future with a small amount of hope and faith….