Remembering Jane

*...takes deep breath*

*...tries to channel inspiration from Jane...*

Ok, here goes:

First, a huge thank you to the many people who have been in touch to offer condolences, support and thoughts over the last two days.  It really, really helps to know just how much love there is out there.  Jane's blog has received a cool 4,000 unique hits in the last 36 hours, which is a tribute, I suspect, to my beautiful writing style.  Or - just possibly - how widely she was loved.

Second, and, given that Jane was a consummate fundraiser, she'd approve of this bit, a lot of people have asked how they can make some sort of donation in Jane's memory.  Beating Bowel Cancer became like a family to us, offering support, love, laughs (yes, really) and wisdom.  Jane asked that I do what I can to raise funds for them in her memory.  So I've set up this page: uk.virginmoneygiving.com/rememberingjane.  We (and the charity) would be hugely grateful for any donations.

And I also promised some news on an event to remember Jane.  We're actually having two events next week.  The first will be a cremation on Wednesday, which will be for close friends and family.  We will also be having a celebration of her life which we will be holding at Battersea Dogs and Cats Home on the afternoon of Friday 7 February.  I'm afraid we only have space for 150 people, and will be getting in touch with about 125 or so friends, family and colleagues over the next day or two.  The sharpest readers will have spotted that leaves 25 places.  Given how eclectic and varied a mix of friends and interests Jane had, we'd like to offer up those places to the many people who touched Jane's life and who would like to say goodbye.  So if you swapped anecdotes on the Beating Bowel Cancer forum; if you were moved by Jane's activism at Warwick University (and, frankly, who wasn't?); if you suffered the ignominy of having to admit you worked for the same organisation as Paul Dacre, or were at Capital with Jane; if you are a Twitter friend (she really, really loved Twitter) or a fellow Earlswood mum (and she really loved Earlswood too) then we want you to be there.  Or 25 of you anyway.  The brilliant Battersea team are helping co-ordinate things so if you'd like to come please email gemma@battersea.org.uk.  The first 25 will get in.  And you don't have to write a 250 word essay on why you are suitable or anything.  I'm sorry we can't accommodate more, but I fear that, given those 4,000 hits, if we opened the gates of Battersea we wouldn't fit everybody in.  And all the dogs would escape, which would be funny awful.  We'll provide more details to those who are coming.

I hope all that makes sense.  I have a horrible feeling it's overly-complex, poorly thought-through and slightly rubbish.  Jane would expect nothing different from me, so she'll be rolling her eyes and smiling at all this somewhere.  

And as for us - we're coping.  It's difficult to avoid all the tried and tested cliches, so I'll just say that losing Jane has been as horrific as you would all probably suspect, but we are coping.  All three children are being wonderful: open about how they feel, strong, loving and understanding.  Jane would be so incredibly proud of them.

She's gone...

It's Alastair here with the news that Jane died peacefully at 11.22pm last night, Sunday 26 January.

Having worried for so long about how I could possibly live up to the brilliance of Jane's blog, I now find that of course I can't.  There are no words to describe how much Zak, Ilias, Rosie and I love her and will miss her.  There are, however, so many people Jane would want me to thank for their support over the last 18 months, and I will try to pull something together over the next few days.

We will be holding an event to celebrate Jane's life in a couple of weeks or so.  I will post details of that on this blog.  The one thing we do know is that it will be hosted by the wonderful Battersea Dogs and Cats Home, where Jane was so happy.  More news as we get it.

I'm so sorry to be breaking such bad news.

Alastair

The latest news

First up I am so sorry for not updating this blog earlier. Being a good marketing/sales/fundraising person I prefer a positive story to downbeat one and sadly the news hasn’t been that great.

After pestering for 6 weeks for my overdue scan I finally had it on the 23^rd August with results on the 11^th September.  I knew that it wasn’t going to be good news. The amount of pain I am in has slowly increased over the last few months.  I can feel the tumour in my stomach and it definitely hadn’t been shrinking on chemo 2. So I wasn’t shocked when Dr C told me that my cancer has become resistant to the last lot of chemo and that it was time to try a new regime. I also had warning signs through a return to some of my old liver tumour symptoms; hiccups, a slight ache in my right shoulder and a stabbing pain when I yawn. All the result of a distended liver that is pressing onto my diaphragm, nothing as bad as last August but not a signal to put champagne on ice.

Fortunately when you have stage IV cancer there are so many times that hope is knocked out of you that you get quite used to dealing with it, and whilst Al and I did cry, we are fairly robust now. Or as robust as people who are very fragile can be.

The new chemotherapy regime of drugs is;

·         Oxaliplatin

·         Capecitabine

·         Avastin (at least one of them is easy to spell)

Side effects wise Oxaliplatin seems to create two main challenges for me. Firstly on the Sunday after chemo Friday I seem to be projectile vomiting a la The Exorcist. Feel deeply sorry for Al who’s on constant cleaning duty. Secondly I have what is known as peripheral neuropathy or mad painful tingling in my extremities whenever they come into contact with the cold. My fingers, hands, tongue (if I have a cold drink) go into a sensation a bit like chilblains and it isn’t pleasant. Fortunately this seems to wear off after about a week. I have been told by Dr C that Oxaliplatin is more toxic than irintocan and that the effects build up…but at the moment (after 2 doses) it’s manageable and as long as it’s more toxic to cancer than to me, bring it on.

Capecitabine consists of 4 tablets taken twice a day for 14 days. It is a more drawn out version of the pump I used to have for 2 days. It turns my stomach into a loud and grumbling washing machine. The noises are reminiscent of the giant plant Seymour from Little Shop of Horrors only with less charm and musicality.  I have had to stop taking it a couple of times as it disrupts my stomach enough to be an issue.

Avastin – side effects = none!! Is this really a chemo drug? No side effects, no spots, or nausea or pain, a mere 15 minute infusion at the hospital? This is a weakling’s chemo and I love it! It’s meant to be good for knocking back the liver and lung tumours and replaces the acne inducing cetuximab.

I have had two doses of the new regime and so far it’s manageable. The post-chemo fatigue is a bit worse than before and I struggle to keep my eyes open at times during the days directly after chemo but actually I feel okay.  Like I say, I can put up with quite a lot as long as this chemo hurts the cancer more than me.

And soon I’ll update on the fun 36 hours I spent in A&E…

One year on

A year ago today I was alone in a hospital bed surrounded by a group of medical students and an insensitive junior doctor being told that I had advanced bowel cancer - with tumours on my liver and lungs. A quick trip around google made me realise how serious this was and that the prognosis wasn't, to put it mildly, great. As I lay there I remember thinking "okay I am going to die, I can cope with that" then I spoke to Al and thought about saying goodbye to him and the children, and my world fell apart.

I cried a lot in the months immediately after my diagnosis. On the way to work I had to stop and walk around Battersea Park in tears, dropping Rosie at nursery, seeing Ilias off to school, telling Zak - all times when I broke down and couldn't cope. On so many occasions I had to call friends or family to talk me out of my panic and give me hope. I was terrified that this would be my last Christmas, my last start of school term, my last everything. I felt that I had no future and that this was the beginning of the end of my life.

I'm not about to say (and I won't ever) that getting cancer has made me a better person, and that I am grateful. It hasn't and I am not. I hate this disease. I hate the pain it causes me. The stress it places on my family and the constant dark presence of it in our lives. But I have realised and discovered some amazing stuff. Virtual friends can become as important and valuable as real ones. The amount of support and love I have received from the Beating Bowel Cancer forum, and charity is phenomenal. In the fact the amount of support and love I have received in general is just phenomenal.  From work, from family, from strangers and from friends. I didn't realise how much love and care there was around me until I got my diagnosis. I have also genuinely learnt to really appreciate and value some of the beauty in the world. I breathe in the air and look at the sky and smile. I try and see the joy and wonder of the world and revel in it. Don't worry I also get grumpy when the train home is noisy, if men spread their thighs across two seats and when people walk slowly in front of me - I do work in London afterall. And as regular readers of this blog will know, I am still a bit of a miserable old cow who feels pretty sorry for herself at times.

But for me the big revelation is that you can live with this horrible disease. I have continued to work full time, albeit with the support of the brilliant and wonderful Battersea. The kindness and care towards me demonstrates the truth behind the values and love that exist at the Home. It is a remarkable place and I feel so lucky to work there. I have been promoted and whilst I know that my 'disability' shouldn't officially stand in the way of my career, I am also grateful that Battersea can see past cancer. I am still a mum with three wonderful, demanding, noisy, funny and lovely children, for whom a visit from the district nurses just means that it's Sunday evening. I have the best husband in the world (this is a fact) and we talk, and bicker, and laugh in the same way we have always done.

So a year on I am still alive. In fact, thanks to chemo I am in better health than I was - despite my on-going pain issues and inability to digest anything a bit challenging and overtly fibrous. I am looking to the future, with Al and I excited about a New York trip in November, and most of today spent planning budgets for 2014 - living on the edge that's me...

A cancer diagnosis is shit. There's no two ways about it. This is not a good thing. It isn't however the end. Even an inoperable diagnosis like mine doesn't mean it's all over. It feels vaguely ridiculous to say but in this instance I inspire myself. A year ago I believed my life to be over but it wasn't and isn't. I am still here. I have made plans for the future, I am part of an organisation that is making the world the world a better place (and not just for dogs and cats), I have a brilliant and loving family, wonderful friends and I am alive, in every sense of the word.

I am alive and it feels brilliant. 

Chemo round 2

Did I promise laughs in my next blog update? This could be a struggle. I’m sorry. Chemo 2 has seen its own distinct set of challenges that I have left me, in the main, reaching for the cover-up or the sick bucket or a packet of tissues.

The spots that erupted after chemo 2.1 were reminiscent of a comedy sketch from a bad 80s American movie. There were so many they looked drawn on, I was pizza face extraordinaire. Spots that covered my face, neck, chest, back and scalp. The crunch point for me was my scalp bleeding from the power of the shower jets.  Fortunately the oncology team agreed that this was a very severe reaction and I've been off the cetuximab since that first dose. It'll be back for chemo 2.5 and hopefully the 'rechallenge' will be okay.

Other than that chemo 2.0 has seen the usual round of stomach cramps, sickness and fatigue but (dare I say it) hasn't been too bad. I've thrown up in a handbag (pure class), outside the house (still got to work on time) and in my trusty bucket. I've been so tired I can hardly stand but I've coped and continue to cope.

Emotionally it's the usual grind. Mostly I manage by pretending that it isn't happening and I'm not prepared to accept the incurable diagnosis yet, but at times it hits me and I cry.

It's very hard to explain what it's like constantly putting a strong face on it to those that don't have an incurable illness. Every mention of age, every plan that's in the future seems like a threat or a dream. I try and be positive and create happy memories for the children and Al but sometimes it's all too much and I’m a grumpy old cow.

It can feel like cancer has trashed my skin, my figure and my future. What remains are some fragments of self-confidence gleaned through a loving family and a brilliant job, but even they are regularly challenged. And I get the odd hour or even two when I forget that I have cancer. Never for that long but I am regularly distracted. 

My oncologist thinks I'll see Rosie start school in September 2014 and I am glad for that time, but it really doesn't seem enough. I want proper wrinkles, I want white hair, I want to go deaf, to have my arm held when I walk down the road. I want to be old. And I desperately want to see my kids leave school, go to university, get married, have children. All the stuff other people take for granted.

Cancer isn't fair. Most of the time I pretend I don't have it and that I'm like the rest of you, but the reality is that I can't forget and that really really hurts.

On the positive side, myself and a colleague won a challenge to produce the best corporate pitch at the Institute of Fundraising conference, Ziggy (the dog) came fifth (we were robbed) in the most handsome dog at the Battersea Old Windsor Fun Day. Zak can do a front flip, Rosie has let me put her hair in bunches on more than one occasion, Ilias has a very cool new haircut and Al is exceptionally buff these days!  I knew I’d get a smile in here somewhere.

Quoting Churchill & Bevan...

It's a slightly ranty one this week but having spent over 5 hours hanging around waiting for late appointments I've had plenty of time to get riled up.

So here it is...

Lies, damned lies and statistics

Statistics apply to populations and not individuals as both Dr C (my brilliant oncologist) and Ailsa (my brilliant friend from the Beating Bowel Cancer Forum) have reminded me. However statistical knowledge impacts on individuals as well as highlighting why remaining a feisty individual is pretty vital to this whole process.

Recent numbers from the States show that in the best medical facilities, with access to premium healthcare, survival rates for metastatic cancer (advanced or spread to distant organs - all a bit Starship Enterprise) have improved dramatically in the last 15 years. Whereas previously only 6% of people with stage IV cancer survive past 5 years, now thanks to new medicines such as cetuximab and avastin those numbers have increased to closer to 20% with projections of up to 30% for those diagnosed past 2004. All good, and excellent news if like me, you have advanced cancer and that 6% figure has been flashing through your mind every day since 8th August 2012. However not so good if you're poor and black. In fact for these individuals the outcome rates are nowhere near as dramatically improved and this is primarily due to the care they can afford.

So what does this mean for the wonderful NHS where it's all free (unless you're in Scotland in which case it'll be £720 a week for cetuximab, thank you very much). Well in my experience it means you have to be question everything, be prepared to be pushy and unpopular, and you never, ever assume that the ubiquitous 'they' have got it right.

Since cashing in my national insurance contributions in a big and major way last August I have been amazed at the high standard of medical care I have received and by the kindness of some healthcare professionals. I have simultaneously been let down by crappy admin on several occasions and most recently just forgotten about all together.

The examples range from the ridiculous letter where I was referred to as an 'unfortunately 41 woman'. What as opposed to being 'fortunately 40' or 43 or a man? To the district nurse who failed to replace the sterile dressing covering my PICC line ( that leads to my HEART) because she was 'worried that her car wouldn't start'. To forgotten drugs and long trips to out of hours doctors to get them, to no-one turning up on 2 occasions to flush through the PICC line. And it goes on; typos in letters, mistakes that leave me waiting around the hospital for hours, missing sterile dressings from the district nurses and then there's the big one. 

Last month I fell out of the health care system all together. I had my scan and waited and waited and waited. Nearly three weeks went by before I called and asked why I didn't have a follow up appointment. 'Oh did they forget to book you one?'. Yes they did. Luckily this isn't a life threatening conditioning or that serious...or that I am not now in constant pain that an earlier start to chemo might have avoided.

Where I am lucky is that I am young (in cancer terms), relatively articulate, happy to be pushy (no shock revelations here), English is my first language and I don't have blind faith in much, and especially not in the admin systems of the NHS. Imagine how a frail, old, frightened, non-english speaking person might navigate this big beast of a system?  Would they have questioned the missing dressing? Would they have waited even longer for an appointment? Could they have died waiting? Seriously, how many people die because they wait?

Statistics do not apply to individuals, and they do assess populations but it seems to me that a huge baring on the outcomes recorded in those statistics rests upon the individual's ability to drive the system. This is a sad inditement of a service set up by a post-war government who recognised the importance of individual care. Aneurin Bevan (the quite wonderful founder of the NHS) stated that;

"Not even the apparently enlightened principle of the ‘greatest good for the greatest number’ can excuse indifference to individual suffering. There is no test for progress other than its impact on the individual."

I love the NHS. It's saved my life. I am only here 10 months after diagnosis because we have free at the point of delivery health care. It's brilliant, wonderful and full of some of the most dedicated and kind people you could hope to meet. If you ever think it's a waste of money, you try valuing what an extra year with their mum is worth to my children, my life is to my family - my individuals. But like many a good organisation it has it's flaws and we have to be open enough to address them.

All of us who enter the NHS are individuals and some of our stats get fed into a great statistical machine and churned out into prophecies of doom or hope. What needs to be factored into these numbers and acted upon is how much responsibility patients can/should have to take for their own care. At the moment outcomes are not a true reflection of the scientific application of medicine, but (to some extent) as in the USA instead mirror how much power people are able to exert. For the sick and the vulnerable, already challenged with this most deadly of diseases this could well be a test too far.

For me, it's been a lot of waiting around, in pain and getting a bit worked up.

Anyway. the ranting is over (for now). I'm back on the chemo ward on Friday so there will be more tales of surreal moments from the haze of the chemo infusion to come. And I promise to at least to attempt to be funnier.

Jane x

It's not much of a roller coaster

I've heard cancer described as a roller coaster, a battle, 'a prat' (big mistake Race for Life - a big, clumsy, thoughtless, mistake) and probably most accurately as a 'five year long car crash' by Ade Edmundson.  I'm kind of hopeful on the five years front, as right now that's looking like a good stretch for me.

Cancer doesn't have highs and lows. Not when it's advanced. When it's advanced, cancer has some glimmers of optimism, rare beacons of hope, and lots and lots of relentless moments of deep, intense sadness. Frustration for the life you can no longer have, tears for the moments you'll miss and numerous occasions where you have to pull it together, 'live in the here and now', 'stay positive' and sometimes just not cry, even though you really really want to.

Unfortunately I am having one of those periods where it's all a bit tough right now. Sorry I will try and be more upbeat and I am sure my naturally sunny (sorry caustic) disposition will be back in place soon, but right now I am a bit down.

My cancer on the other hand isn't. Having taking a good old kicking at the hand of chemo I thought it was feeling a little defeated. Unfortunately as Dr C informed me I don't have a nice placid cancer, mine's a feisty bugger and has chosen my chemo break as an opportunity to come out of it's corner with a couple of hard knocks. The good news is that it's not moved to any new organs or areas, the bad news is that it has moved forward again in all the places that it had been subdued. The lungs - tumours are visible again, the liver - it's back and the sigmoid colon (my primary) is finally causing all the bowel cancer symptoms I could have done with about a year ago. Basically it's a case of two steps forward, one step back - a painful kind of do-si-do. 

The main problem is that the re- growth of the primary tumour is such that it is no longer long and thin but (rather like me since chemo) is sticking out in a series of awkward positions. The result of this is that I can no longer digest anything vaguely leafy or fibrous (I am on the white food only, teenage boy diet) and I am in fairly constant pain. There's not a lot of room down there and the tumour is causing me back ache, a weird pain in my right leg, stomach cramps and bloating most afternoons, all coupled with a non-stop pain in my lower stomach. The pain is tough and debilitating  and is definitely a big reason why it's all feeling a bit harder than it should do. 

I do however have a stunning cocktail of drugs to take; and in a possible Breaking Bad type career move, have considered popping across to some of the more notorious Battersea estates to sell my temazepam, morphine, steroids and tramadol. Coupled with some out of date ketamine from the Battersea vet clinic I can feel a whole sideline coming on. Obviously these views (jokes) are my own and not those of Battersea. Blimey this blog is cheering me up already.

Anyway I am back on the properly toxic drugs on the 17th May. The PICC line is reinserted on the 13th (happy birthday Al) and I'll soon be back to the cycle of feeling a bit crap, a weekly bucket session and the joy of the Chilworth Day Unit and all those cheery old men. Woo hoo. Actually I am bizarrely looking forward to it. Chemo works for me and I am in so much pain right now that the thought of the primary shrinking back down is just glorious.

I do have a plea though. YOUR CLEGGS NEED YOU! Please give my husband some love and the odd break! It is seriously hard being the other half to a patient. He has the stress and worry and sadness to deal with day in day out. Plus there's the pressure of looking after three kids when I am stuck in my chemo haze and unable to cope. At these times I am 'neither use nor ornament' as my northern friend Sith used to say. So please ask Al how he is. Please. Offer to look after Ilias or Rosie (she's more demanding...), tell him that he's brave, wonderful, inspirational etc because actually he really is. Just imagine for one moment that the person you love and live with was in constant pain and was probably going to die and that you were facing years alone with three kids; and also imagine that the one person who would normally comfort you can't. That's Al's every day. He needs a bit of love and if there's one thing you can do for me, for us, is to give it up. I need to know that he has a support network because I'm not able to provide one a lot of the time.

The good news is that I have been slightly dreading this blog update but I actually feel better after writing this or is that the morphine's kicking in...

Onwards and inwards with the PICC line and chemo.