Wednesday, March 01, 2017

Little short of miraculous

Hi

I have been shut out of my own blog for a while, but now I have gained access again I think even passing strangers might like to know that the resounding silence in here is not because I am DEAD .. which is what you might assume of silent cancer patients.

Au contraire, I am very much alive and my oncologist has signed me off - after a ten year relationship he has finished with me,

Happy Days,

Tuesday, January 07, 2014

More surgery

Hi
Long time no post.  Life has been pretty  "normal" so I don't feel the need to blog when I am just getting on with things ( as best I can despite my left-overs from the treatment regime)  .. it is generally all good, but really not that interesting to keep a diary of!

But right now I am sitting at my desk, totally housebound by more abdominal surgery.  This time it was to repair an incisional hernia where my previous surgery had opened up inside my abdomen.

I sort of thought it would be quite routine, but it turned out to be an 8 inch cut with over an hour in surgery and  then I got rather a nasty post-op complication with lots of internal bleeding and swelling.

I am not over that yet, still sore, still swollen and still very tired, possibly aneamic? Anyrate I am seeing my surgeon again tonight, to see if she needs to aspirate my abdomen again.  She took 300 ml of fluid from just under the surface last week.  I feel better now but at one point one of the docs at the hospital told me the repair had broken down and I got into a major stress about that.

My surgeon has reassured me that she is confident that the mesh she put in is still in place, so hopefully it will all settle down and be better than pre-op.

This stressing made me think how good I had become during the 6 years of my treatments about not worrying about the future, I literally used to just compartmentalise and not look forward very far at all.
I had developed my own way of way of "living in the now", and avoiding the anxieties that looking forward can generate.  It seems that if you aren't always doing that you can get out of the habit, and I was wallowing in a sea of stressful "what ifs"... over the festive period.

This experience has reminded me to keep on with the mindfulness, to keep a sharper eye on my mental health and not allow my life to get sucked up with too much forward looking and fear again, about anything.

It is not good, ever!

This is my fifth cancer-related operation.  I hope it is my last.  I am mostly doing the internet / TV and tapestry at the moment.  This is my fourth tapestry ...   they are a good occupation for me when I can do little else.  I am forbidden to do any gym until March! ARGHHHH

Happy New Year, to anyone who might be reading ... according to my page views some ppl still are!

Monday, May 06, 2013

Beating Bowel Cancer Charity

I am a volunteer moderator for a forum run by the Beating Bowel Cancer Charity.  

Recently I was given an award, presented as part of their Patient Day in London on April 27th 2013.

It was a great day and a time to enjoy being with friends from the forum and also learning more about this disease.  I will post more about what I learnt in another post. 


This is me with the other two award winners, the Chairman and CEO of the charity and the lovely Floella Benjamin! 



Me n the Chairman and Floella ... 




Some of  the forum gang: Jill, me , Hazel, Brian, Mary, Ailsa, front row, Ange and Jane





Losing Friends

The trouble with being involved in a cancer charity, either as a patient or a volunteer is that you lose your mates to this disease.

RIP to the lovely Alison Helen whom I met through the BBC (beating bowel cancer) forum and in real life.  Her rapid decline and quick death came as a terrible shock to many of us and her energy seemed so undimmed even to the end.  I keep crying because I keep wanting to talk to her and the gap where she used to be is still very sore.  It must be awful for her family.


It is hard to explain to people who do not use forums etc just what an amazing job Alison did in reaching out to strangers around the world dealing with bowel cancer. She was extraordinarily kind and supportive.

And very few of the people who benefited from her help will have realised how much medical trouble of her own she was dealing with at the time. Her surgery, her chemotherapy, her repeated stoma blockages, her fall and rib fractures, the delays with the specialists, misleading promises, to name but a few of the things she was dealing with over the last two and a half years.

She was always so stoical about it all and never sought pity for herself. Even this year, when things have deteriorated so quickly she scarcely gave her forum buddies any clues as to the gravity of her situation. A shame, really, because one thing with cancer, you do get warning of the end, and can make sure your loved ones know how much you love them. I would have liked the chance to be more explicit to her about the high esteem we hold her in.

I think she DID know. I hope she did. Let part of her legacy be that all the special people in your life DO know how much you value them. Never be afraid of saying 'the last goodbye' too soon.

----------------

RIP to Alison Mitchell whom I first met in the Macmillan forum, and cherished as a wise and wonderful poet and also as someone who had survived bowel cancer for many years.  I think in the end she managed 10 years.

RIP to two of my friends who were in chemotherapy with me in the Nuffield but who both died before Christmas last year.  Both of them had had this disease for a year or two before I met them and I always thought they were inspiring because the soldiered on with repeated treatments and stayed alive ... for then at least .  But no longer ...



Monday, November 26, 2012

November 21st 2012. A dark day.

Today I went with my mum to hospital.

She was told that she has an abnormality in her colon.

So now we know that me and my mum are in the same boat. It makes me sad to think of her facing the treatment etc which this disease brings in its wake. We don't know yet exactly what her treatment programme will be. She has to have more tests yet.

I am so sorry that you have to go through this, mum and I hope I can use my own experiences to help you deal with it all.  I love you very much.


Tuesday, November 06, 2012

Facebook

Rather gutted to find that lots of my photos have gone from here thanks to some "improvements" in how facbeook deal with photos ..

What a shame.



Friday, May 11, 2012

New Scan, New Challenges

Well there is good news ...the lesion on the right lung has not changed and there is nothing new to report on this 6 monthly CT scan result ..

I hate to be too euphoric in the same way I hate to get too miserable with bad news .. but I think a little YAY might be in order here ..

YAY!!

Brightly coloured in honour of the wonderful anti-cancer regime and its trade mark turmeric .. my life is being extended by this regime ... no question

YAY!!

So I need a new challenge .. in the past I have taken time in remission to do up this shed, renovate our home in Stoke and establish a forum for anti-cancer materials. 

Now I have started to look for a few more mountains to climb ...


Onward and upward, people, onward and upward ... and anyone who hasn't switched to the anti-cancer lifestyle, whether you have a diagnosis or not, I would just ask you, why the hell not?

Find out more here:
My Anti-cancer Forum

You know it makes sense ..

Sunday, April 08, 2012

Lung Op recovery

Update on healing .. it all went pretty well, but I still get some sensations of pain around the front of my ribs, which are worse, even "quite bad" when I am tired ... it is 3 months since the operation now.


I did my physio breathing and stretching exercises religiously, as instucted; my breathing and movement now seem perfectly normal again and I have resumed cycling at least on the flat, with occasional hills, which also seems OK most of the time .. although I am noticeably slower and need more rest after exercse than I used to.

In fact I feel pretty weedy quite often, which maybe related to the ongoing effects of all my treatments, but could be exacerbated by a persistent throat virus which I have been labouring with for a month now .... it is getting better but I suspect still debilitiating me like a flu type thing .. it takes me a while to recover from anything like that nowadays, perhaps becaase my white blood cell count has never really recovered to normal after the chemo (which finished two years ago!)

Not withstanding any of this we just had a lovely break in Paris just now, and I walked a lot.