Tuesday, 29 November 2016

What a difference a day makes

In February of this year I wrote this post:

Apart from some pretty heavy duty insomnia, memory loss and impaired mental function I'm actually doing OK for someone who is approaching their 'expire by' date. So I thought I might try to apply some logic to my current situation, partly for my peace of mind, and partly for some clarity for those who read this blog. 

So from November 2013, the sequence of events has been as follows:

10th November 2013: Find lump
12th December 2013: The glamorously named 'Lumpectomy' takes place
24th January to 7th March 2014: Chemo one to three - FEC (what felt like interminable sessions of intravenous poison administered via giant syringes)
28th March to 9th May 2014: Chemo four to six - Docetaxel (as above but with added baldness and agonising muscle pain)
21st June 2014: End of three weeks of radiotherapy - like water off a duck's back
15th May 2015: Diagnosis of secondary breast cancer to the brain (although I knew it could happen, this did completely knock me for six - tough times indeed)
End May 2015: First brain surgery (apart from a vicious twenty four hours after surgery, I was walking round a local beauty spot twenty four hours after that and felt great)
Mid July 2015: End of intensive three week period of whole brain radiotherapy (unspeakably painful and seemingly unending,the worst treatment of all)
August 2015: After all this, the tumour came back at exactly the same size as it was before although now I am completely bald, weak as a kitten and constantly vomiting (feeling a bit sorry for myself at this stage) 
August 2015: The pugnacious growth is then removed again and although there is some impairment, I am OK
13th October 2015: Discovery of pulmonary embolisms due to inactivity (the irony!)
21st October 2015: Terminal diagnosis received but as of my last scan my tumour had not returned

So this brings us right up to date. 

I'm feeling OK. And as it's hard to believe that my health could deteriorate quickly, I'm cautiously making the most of things even more than ever. I recently watched a TV programme featuring Rowena Kincaid, one of my cancer contemporaries and although she's not in the best of health, she is still with us and living life to the full (as much as constant treatment will allow). (programme available to view until mid-March 2015 via this link >>> http://www.bbc.co.uk/iplayer/episode/b071fb66/before-i-kick-the-bucket-the-whole-story )

Like her, I feel like this really can't be the end. So I've done some calculations. According to my oncologist, my diagnosis from 21st October 2015 was "months, not years", however according to Cancer Research UK, for someone like me who is healthy (comparatively), young with a single site tumour and no metastasis, (all comparative bonuses) this could be up to 13 and a half months as a best case scenario. So all this number crunching would bring me to the 4th December 2016. I just need to make the most of my time until then and who knows, maybe even push it further to sneak in an extra Christmas. Now doesn't that sound like a beatable target?

Transcribed by Dean for Amanda.

This is today...

On reading this today I feel an odd combination of elation and sadness. Rowena Kincaid is sadly no longer with us. That's also the case for my wonderful Mum and my lovely friend Shelly. Christmas is fast approaching and so is my 'death date', 4th December 2016. So is the end nigh? It certainly doesn't look like it to me. My 'months, not years' prognosis has been reversed, and I now 'only' have secondary cancer. I am a lot fitter than in February and go running three or four times a week (albeit super slowly). I still have no metastasis (my cancer hasn't spread from my brain as far as we know) and with the help of a very patient hairdresser, I now have long, blonde hair again. I'm enjoying working part-time from home and I've bought and wrapped all my Christmas presents. Amazingly I haven't had a migraine in months and my recent mammogram was clear. 

I personally feel like this is a sure-fire miracle. In just nine months my life has been completely transformed and I get to spend an uneventful (roughly translated as 'wonderful') Christmas at home with my amazing Dad and husband. I feel completely uplifted and blessed beyond words. I know that others have been less fortunate than myself and I pray for them daily. But for now I want to sail past the 4th December and celebrate Christmas with my nearest and absolute dearest hoping and praying that it's the first of many, many more. 


Wednesday, 9 November 2016

A surprise call

Whilst on holiday in Spain, my head buried in my third novel of the week, I was extremely surprised to receive a phone call from my GP. My heart was in my mouth as I tentatively answered my mobile. First, he asked me how I was doing and I explained that I was doing extremely well and he said that he was pleased to hear it. The reason for the call was to remind me that I was still on a 'DNR' list for palliative care (in my case the 'end of life' team) and it was a year since I had signed up to make it clear to my loved ones that I had made the decision to not be resuscitated in a situation where this would be necessary. 

To those who are unfamiliar with a 'Do Not Resuscitate' order, it is a written instruction from a doctor which instructs health care providers not to carry out CPR (cardiopulmonary resuscitation) if the patient stops breathing or their heart stops beating. Either way, it's not looking good for the patient and they choose well in advance of this moment (when they are well enough to decide, usually when they are diagnosed as critically or terminally ill but still have all their faculties) to make the decision not to be resuscitated. This decision relates specifically to resuscitation and not to any other type of treatment or medication and is not made lightly by the patient, but in careful consultation with medical professionals. Resuscitation includes mouth-to-mouth, electric shocks to restart the heart and breathing tubes to open the airways and is only implemented in a dire emergency. The reason to have a DNR in place is that if I am in such a desperate state of health, and this choice will simply defer the inevitable, I would prefer to die naturally than to have a desperate and destructive fight for a last glimmer of life. 

Fast forward to today, it was a shocking reminder of how close I had been to death only one year ago. Lying on my roof sofa (my favourite place in all the world), I couldn't be further removed from those testing times. So, did I remove myself from the list? For now, neither I nor the GP felt that it was appropriate to stay on the list, so I was excited to ask to be removed. This only serves to remind me how far I've come and how blessed I have been. So, back to the book, back to living a wonderful life and back to gratitude that I am here to live another day.

Wednesday, 2 November 2016

Her Story Too

Following on from Her Story (The last three years have actually been like a soap opera)

I remember the day in question as clearly as if it was yesterday.

It started out as a perfectly normal October day until I received a telephone call from Amanda.
Now Amanda and I have seen each other regularly ever since we met on my birthday back in March 2014, whilst we were both having our chemotherapy session. We have seen each other on a weekly basis when circumstances have allowed us to (we both seem to now take more holidays than previously), and if we haven't been able to meet up, we have called each other for a chat.

So, going back to the phone call. As soon as I said 'Hello Amanda', her words were 'I've got some bad news, I'm dying'. That was it, no sugar coating the issue, no idle chit chat beforehand. As far as bad news went, this ranked No 1 in the 'Top 10 things you never want to hear' list. This pushed the previous two bad news phone calls, both brain tumour related, to the bottom of that same list.
Devastated beyond words doesn't even begin to describe how I felt to hear those words coming from this lady who had become one of my closest friends.

Last Christmas was tinged with immense sadness, knowing that it was likely to be the last Christmas that Amanda would be with us. I know that none of us know when our time is up or even if this year will be mine or a loved ones last Christmas but actually being told that you have months left to live and not years is quite fearful by anybody's standards.

Being given this news, many people would have curled up in a corner and cried and been full of self pity but not Amanda. This very special lady organised a pre funeral celebration of her life as she wanted all her many friends and family to be left with a lasting happy memory of her. Ever since that dreadful day, Amanda has spent the last 12 months enjoying life, meeting up with her friends for long walks and lunch dates, enjoying holidays and generally just spending time with the people she loves and cares about.

And now here we are, the last year has flown by again, which should be a reminder for everyone, that life is so very precious. We should all love our families, love our friends and never take our health for granted. Long may Amanda and I remain in good health and the best of friends.

A guest blog from Amanda's dad

The end of a year and the beginning of a new year are times for reflection and remembrance, and 2016 is certainly one to be remembered with extremely mixed emotions.  My mind goes back to this time in 2015 when Carole and I were contemplating Christmas 2015, albeit with acute apprehension, as it seemed quite likely that it could be Amanda’s last Christmas.  Who would have thought that 2015 would instead be Carole’s last Christmas and that in 2016 Amanda would miraculously still be with us?

Carole’s condition(s) had seemed to be under medical control through her various consultants, whilst Amanda’s were deemed to be terminal.  However, we enjoyed Christmas 2015 doing the traditional things that we’ve done for many years, and got through December 27th remembering Amanda’s sister Stephanie’s birthday; she would have been 40 years old this year.

In a previous blog Amanda has mentioned a plaque that I bought for Carole engraved ‘Every day is a gift from God’, and it really is!  I believe that we should all live every day as if it were our last, and I’ve certainly got no regrets at all on how our family has lived through the years when we were all together.  We have had a tremendous life filled with love, laughter (a very important ingredient) and had amazing holidays.  We also have been blessed with brilliant friends with whom we shared our lives, and not surprisingly those same friends are still there supporting me through this surreal period of my life. Sadly two of these families have suffered bereavement and serious illness as have Amanda’s husband’s family.

The Bible tells us that God doesn’t give us more than we are able to deal with and I truly believe that is one of the reasons that Amanda is still alive; I couldn’t cope with life without her.  Amanda and I visited Christian Healing rooms not too long ago where it was implied that we had both been spared to do special work; we are both up for it.

Only yesterday Amanda had hair extensions and she looks absolutely stunning, and to me and everyone that has seen her recently the old Amanda is back!  As her father and seeing her most days I tend to notice changes, but recently these changes are certainly for the good.  She is also getting involved with certain projects at her old workplace; this is a good thing for her I feel, but a challenge after having such a long and arduous lay off of course. 

Going back to my first sentence Christmas 2016 will be filled with mixed emotions. It will be a cocktail of celebration and sadness, but with a mixer of wonderful memories of Christmases gone by. God willing we will have many more ahead of us to share.