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.

The only silver lining

The only upside I can see to having cancer is that I've met some amazing people. The beating bowel cancer forum, the twitterverse and through charity contacts I've talked to (in real life and the virtual one) some of the kindest, most inspirational, funny and insightful people I could hope for. Sadly the downside of being a member of the cancer club is that while as our population grows sadly too fast, we also lose members.

I'd like to mention two people who've touched me with their generosity and spirit and whose loss has ricocheted through our community of bowel cancer friends. I didn't meet either of these people in person but remain humbled by them and, for what it's worth, dedicate this blog entry to them.

Firstly Alison. Alison offered me the gentle kindness of a stranger when I was first diagnosed with cancer. I stumbled into the beating bowel cancer forum, feeling like a freak with the dreaded C word eating up my innards and found a community of people who welcomed me with sadness at my situation, but also with humour, empathy and warmth. Alison offered many words of personal kindness and the title of her blog 'why not me?' summed up her gracious spirit and gentle kindness.

Alison had so many reasons to feel bitter, her treatment by doctors was at times appalling, but she turned this experience to strength. Alison not only helped individuals like me on a day to day basis but she also supported beating bowel cancers mission to change the way cancer patients are treated. She worked voluntarily with the nhs, helping doctors understands patient's needs and this year told her story in parliament so MPs could hear first hand the experiences of a woman who was told she had cancer in a corridor. Alison was inspiring, gracious and kind and she died last month.

The next person who loss has affected the bowel cancer community deeply is Hannah. Again I didn't meet Hannah, I followed her on twitter and read her blog. I can't claim to have known her well. I can tell you that she was funny, articulate, had an amazing writing style and obviously lit up the world for those around her.

Hannah was apparently clear of cancer but had been struggling with the after effects of radiotherapy and had terrible pain. She was admitted to a hospice several times for respite care and pain relief but the cause of her pain was not established until it was too late. Hannah found out that cancer had returned and it had spread to her brain and her kidneys. Hannah died yesterday. Just 20 days after her 30th birthday. Too too young. Too soon for a girl who loved nail varnish and frozen yogurt, who was funny, feisty and loved by so many.

Alison and Hannah were friends who met through this horrible disease. Hannah mourned Alison with the rest of us and today we shed tears for Hannah. I am a stranger whose life has been touched by theirs. I have cried for both of them but I can't imagine what their families are going through. I can't attempt to give full justice to the impact of Alison and Hannah or to explain what their loss means to the people who loved them. I am just one of the strangers who have shed tears for them tonight.

Every cloud has a silver lining, I just wish that those clouds hadn't carried two of them away.

Scan results.

Al and I saw Dr C, the oncologist, today to get my scan results after 6 months of chemo and it was good news. The tumours on my lungs have almost vanished and the ones on my liver decreased by over 50% - to the extent that surgery is now an option for the future! Dr C feels, and we agree, that it's best to wait and get rid of everything in the lungs completely and continue systemic treatment i.e going for all the tumours, rather than localising treatment at the moment. 

So the plan is to have 6 more months of hardcore chemo on the same regime as before (the spots will be back!) from late April/May, as this aggressive attacking treatment has worked so well. After that (and if I have continued responding, and if there isn't loads of growth during this break - so many ifs) then they will look at localised treatment. According to Dr C short of it all vanishing this is as good as a response as we could have hoped for. So all very very good.

My cousin Jenny said to me right at the start of this, that there is always hope. It's been hard to hang on to that thought and for the first time I am allowing myself to properly think it. Even if this bout of chemo has just given me more time, I have a lot more than I did and when I look at my family that's all I want, more time. 

Anyway it's wonderful to share good news. No doubt I'll be whining and whinging about spots and stomach cramps in May but for now I am enjoying a break from chemo and some brilliant news. 

X

12 chemo sessions done

Today I had my 12th visit to the chilworth day unit. The end of 6 months of hardcore chemotherapy.

I've had cuts on my fingers, cuts behind my ears, cuts on my heels, nosebleeds, thin hair, horrible steroid bloat, even more horrible spots, weekly stomach cramps and vomiting, tiredness, peeling skin and st banda eyes to name but a few of the side effects. And I've cried (a lot).

I've also seen how astonishingly lovely people are; from my fabulous husband who has put up with tantrums, tears and the terrible twos (that's Rosie not me) and been a brilliant wonderful rock who very very rarely gets it wrong, and believe me living with a cancer patient can be a mine field of what not to say; to the kindness of friends and family who've made this hard 6 months so much easier.

Without wishing to go all Gwyneth and sob my way through a thank you speech (it's six months of chemo not Shakespeare in Love) there are a few people (alongside Al) that merit a mention. Hopefully this also makes up for all the emails I haven't returned and makes everyone understand how much it has all meant. So, drum roll please as you meet the non-Sylvan Way members of Team Jane...

First up is my mum. She's been here every other week, for a week, since chemo began. She's put up with a regularly very stroppy daughter (me not susie), looked after three kids, cooked meals,  washed everything going and ironed some of it (weird) as well as making numerous anti-cancer fuelled soups and even clearing up dog poo. She's been amazing and I 100% couldn't have kept working full time (so important to me) without her.

My dad; for visiting regularly (day trips from the welsh borders are not to be sniffed at), treating us to lovely meals, taking the boys (with my lovely brother) on a great day out and extolling the virtues of our lovely staffie.

The Cleggs - old and young. For sending some of the loveliest emails ever - and at some of my lowest points; and coming round and being amazing when I just disappeared upstairs to cry for an hour because my skin was so sore. Equally lovely messages came from the stateside Cleggs. And now Sussex Clegg, Tessa has been just wonderful too, sending the best books to read, lovely messages and a fab DVD set. Several chemo hours have been killed.

Liz, Jack, Carla, Jane, Hannah, Gemma and David along with everyone else at Battersea. I don't think anyone could ask for better colleagues. I get to work with people who aren't just amazing and supportive and kind but as the most phenomenal gift ever demonstrated this week, are thoughtful and creative. And whose responses to my email thanking them made me laugh out loud. The Fundraising team at Battersea score very high on witty.

My friends who've put up with dull rants, tears at random times of the day and who've kept emailing, arranging times to meet up (despite my flaky friendness and regular cancellations) and just been there. Consistently and amazingly. I wont list you all but you know who you are and you're all fab.

Two more to go!

Family. Aunties, uncles, Al's relatives that I've never met, my cousins, brothers and sisters. All of you sent notes of kindness, or emailed or made me laugh and just stopped me feeling quite so lonely at the points when it got tough. If I didn't reply don't think it didn't mean anything. Cancer can be quite time consuming.
My cousin Jenny, who I haven't seen for years, thank you so much for the kindest and most compassionate and understanding of emails. You, more than anyone, get the cancer fear and horror and your empathy shines through. Thank you. My sister Susie who has texted every chemo Friday without fail to send me a virtual hug and who is brilliant and wonderful and also the bestest of friends to me.

And the Beating Bowel Cancer forum folk. The kindness of virtual friends is very much a 21st century phenomena and wow does it help. Like Jenny, these people have been or are going through the cancer mill and just get it. It's an odd one but they've come to mean so much to me. And Beating Bowel Cancer is a great charity. Don't ignore any warning signs people - check your poo!

It isn't over. There's more chemo planned but I have a 2 month break. The PICC line comes out on Monday; and I have a totally submerged soak in the bath planned for that evening. I have a scan booked in for mid-feb sometime and then they'll be another one in April before the new regime starts; so this is a long way off finished. I have accepted that chemo and all its glorious attributes is a part of my life for the foreseeable future.

But Al and I, the three kids, two dogs and one cat soldier on. My big learn over this six months is to live for now. It's a big ol' cancer cliche but I can't think about the next 10 years. I think in chunks of time. Chunks of time that will add together to make years of time and that will see lots more laughter and fun and joy. They'll also see more bad news and good news, and more nasty side effects and plenty more hospital visits but this is the beginning of a new chunk without chemo, without the chilworth day unit or fortnightly train trips to Guildford and I fully intend to enjoy it.

St Banda and St Nicholaus

I have invented a new creature. It is a cross between a panda and a St Bernard, and I am calling this creation St Banda. I seem to be, albeit reluctantly, dedicating a whole look to it too.  I have huge red patches under my swollen puffy eyes and they are very sore. It's not a good look and I'm blaming cetuximab. 

And yes, red is this season's colour but I was hoping to incorporate it into my life via a novelty knit or splash of festive flair rather than a full blown tribute to rouge emanating from under my eyes and chin. This is just not good. Not good to the extent that Dr C and I will be discussing it on Wednesday. A treatment break (from cetuximab) may be a possibility or a reducing the dose. Apparently dry skin is a cetuximab symptom that can kick in a few months into treatment. This I can tell you is true but it's not dry in the 'more moisturiser is needed' sense this is dry in the singing detective sense. Okay, so it isn't a hospital case of dry skin but it is horribly uncomfortable and very disfiguring. 

So, not much a blog this week as a big whinge. 

However Christmas is fast approaching and with two fervent believers in the house (in Father christmas) it's a very magical time here. The local rotary club have a Santa float that goes down our road. A sleigh is pulled behind a car with a waving Father Christmas and festive tunes are played out from speakers. It's Redhill... Anyway we heard the float coming and rushed to the window. The kids were straight out the bath so warm and pink and wrapped in towels. Rosie stood at her window waving with delight. She couldn't believe it when Father Christmas spotted her and waved back.  Ilias on the other hand whispered to me in wise tones that this wasn't the real Santa it was a fake and that the 'real' one only comes on Christmas Day. It was a lovely magical moment. It's wonderful seeing Christmas through their eyes and experiencing all the joy and wonder there. And it more than makes up for St Banda's unwelcome appearance. Well almost.