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 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.
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
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.
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.
It's definitely straws that break, or at least seriously pressurise, camel's backs.
This should be, and in many ways is, one of my best weeks ever. On Tuesday I was awarded Staff Member of the Year at the Best of Battersea awards - baring in mind some of the phenomenal people that I work with, this is a massive honour. The fundraising team have been so lovely in their congratulations; and I've been invited to Downing Street to celebrate on Monday. This is all amazing stuff.
So why did I spend the first hour of chemotherapy crying? Sadly rather than being concerns over world peace, the plight of starving children or senseless cruelty towards animals, my big blubby moment was caused by bad skin. I have a red and spotty face, I've put on weight, and half my skin seems to float a few centimetres from the surface - it's very dry and sore. I look crap and it makes me feel ugly and unhappy.
Cancer is rubbish. It makes you feel tired and causes pain. It puts a ticking clock behind your ear and turns the volume up at the happiest moments. The treatment that keeps you alive chips away at your health and produces a new symptom every week. But today it's vanity that has made me cry. I have never been the prettiest girl in town but I didn't ever imagine wanting to hide away to this extent. It's an odd situation when the thing that counts the least has the biggest impact. This is clearly what the old proverb means.
While the spots and steroid bloat are trying this camel's back - I am trying to remember that whilst they aren't that great to look at, camels do have great reserves and keep going for a long time. And, for all the tears and despite this little 'pity party' (you've got to love daytime TV for a catch phrase) I will get over this hump - geddit?!. See I'm better already.
Red eyed panda
No this isn't a new endangered species. This is my latest and if I say so myself most bizarre and creative of chemo symptoms.
Last week chemo decided to be kind to me. The usual nastiness seemed to be kept at bay. I worked a full day, every day - which for post-chemo week is something of a novelty. My nose didn't bleed. The cramps weren't too bad and even though I had to stop and be sick in a dog poo bag on the way to work, I wasn't actually that ill. No split skin, no bleeding heels. Even the spots seemed less awful.
Ah but chemo is a cunning one. It waits round the corner, giving a sly smile if you relax, then whacks you round the head with a surprise blow designed to fell you at the knees or anywhere else you haven't protected. My arrogance in assuming I had escaped chemo pain has been resoundingly slapped down and sneered at.
This complacency has been rewarded with a whole new look. Tight, sore, red skin under my eyes means that I not only have steroid bloat but puffy swollen eyes too. It's a long way from glamorous and to be honest I can't see it taking off this season. Oh and I have the chin of a 14 year old who spends every free moment in KFC.
Fortunately I have an incredibly supportive boss who said I can work at home today. It's lucky he's agreed this as whilst I love Battersea my unattractive new look means that I have might have found myself getting rehomed as a St Bernard albeit one with spots.
