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. 

Camels

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. 

A red eyed panda?

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.

How do you eat an elephant?

How do you eat an elephant? The same way you live with cancer - bite size chunks. The overall picture is too much to cope with so we live with each chunk and each phase as it happens. 

And today's phase is a good one. I have my scan results and they show an 'excellent response' to the chemotherapy. The tumours in my liver have shrunk a lot and those in my lungs even more. I have gone from a very serious and advanced stage of the disease to regression of the tumours and a result beyond management to a battle victory. My prognosis has shifted from what was months to years so this is all good. 

As I expected there is no miracle result and it does seem as though I will having some form of chemotherapy (on off)  for several years. Localised treatment and an all clear result still isn't an option and I need to put thoughts of that out of my head. Cancer is increasingly treated as a chronic condition and this is the way it will be managed in my case. The recommended strategy of my oncology team seems to be to use chemotherapy to keep it at bay, then give me a 2 month break from the chemotherapy then start chemotherapy again to knock the cancer back some more. 

And this is what I need to focus on. The whole elephant is too much to take in and I can't live my life thinking about when I will die, or when I will be cured. Instead I must focus on each manageable chunk and the fact that I am alive; and that I have won my first three month battle. 

I am also focusing on the fact that there should be a break from chemotherapy in 3 months time. I love those drugs for saving my life but they're hard work and 2 months of normalcy will be just lovely. 

In which I am absolutely terrified.

Today I get my scan results. I think. Logically I know that they will say that the liver tumours have shrunk - if nothing else. I know that my liver isn't as swollen - I can't feel it protruding for a start and the liver function tests showed huge improvement. I also know that the aim of this first stage of chemo was to get the disease under control, before we go for shrinking the tumours, then (hopefully) localised treatment. And I am confident that the first objective has been achieved, if not some of the second. And as chemo trashes all cancer in its wake then my lung mets (this is cancer kid speak for metases - or secondary tumours) and colon cancer should have taken a knocking too but of course I am still terrified. Terrified that it will have failed and everything is worse; and here's my secret fear also terrified to hear the truth that there won't be a miraculous 'it's all gone' result. But God how I have fantasised about that moment; imagining telling everyone that joy of joys it's all gone. I am the lucky survivor, that it is all okay. I am, of course,  in reality more likely to win the lottery than get this response, and I don't buy a ticket. So yes I am scared. 

I should be used to this feeling as a lot of the time living with cancer (or any life threatening disease) is living with constant fear. It is having to shrug off negativity on an hourly basis. It is being grateful for a night without bad dreams and for not waking up thinking about cancer. It is being envious of other people for their happy cancer free lives and reminding yourself that "into each  life a little rain must fall" but wishing, just wishing, that you hadn't had such a deluge. It is finding yourself crying for no reason and begging God to let you survive. It is talking to the air. It is living in hope and trying not to drown in despair. It is the horrible realisation that you probably won't see your kids grow old and trying to come to terms with this. Trying not to imagine their pain if you die or your partner's or family's or friend's. Longing not to put anyone through that, and feeling a little bit self indulgent for thinking about it quite so much. 

And it is, of course, laughing and shouting and bickering and just doing stuff because all the time that cancer is in your head, life goes on. Dogs have to be walked, kids have to be fed and vice versa. 

But on days like this it's hard. The tension which is ever present is so palpable and I just want to have it over. 

Wish me luck. I'm going in.