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.
Tuesday, 18 December 2012
Friday, 7 December 2012
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.
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.
Monday, 3 December 2012
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.
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.
Wednesday, 21 November 2012
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.
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.
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.
Wednesday, 7 November 2012
I actually have good news
Normally this blog is a bit of a rambling collection of thoughts about my journey on the cancer roller coaster. Mainly because I have realised that once the initial flurry of tests and results are over and established, there's not a huge amount to report back. Like most aspects of life, cancer takes on a routine, it's just slightly more fraught than average...
Anyway today I have actual news.
Every two weeks I have a blood test at the St Luke's cancer centre. The primary purpose of these is to establish how my immune system is coping with the battering it's given by chemotherapy. However my liver function is also assessed as this is where my unwelcome guest is at its most dangerous.
When I first started chemotherapy there were a proliferation of enzymes in my blood that demonstrated how hard my liver was working to keep going. In one test where a normal level is 70, mine was 700 and in another it was 59 where it should be under 20.
Please forgive me for not knowing what these special enzymes or levels of stuff are called. I just know that they are released when your liver is in a bad old way.
So today I asked what these figures are now (after 4 sessions of chemotherapy) and it's good news. Actual good news. Yes, good news!! In fact the first good news since this hideous thing kicked off. The 700 figure has dropped to 300 and the 59 is now 17 and normal! While ultimately my chances of having surgery are determined by the size and position of the lesions on my liver, this is a positive sign. It shows that my chemotherapy is working and that this disease is being controlled.
It's blooming lovely getting good news - and actually just as lovely sharing it.
Me and Obama eh!
You can be ill and I can be well
Cancer isn't a happy topic and it isn't always easy to know how to respond or what's appropriate to say. This blog offering isn't critical of anyone (this cancer journey is bearable because of all my friends and family's support) but I do want to knock down a couple of taboos.
One of the slightly more random side effects of cancer is other people's embarrassment about being ill around you. I appreciate that cancer is pretty much up there in the hierarchy of diseases but at the end of the day other people's illnesses, colds and trials still count.
Whether it's a rotten cold, a chronic ailment, a condition that means you're worried you might never be able to fall in love for fear of passing it on or a searing headache; pretty much anything (other than man flu) is deserving of sympathy. Cancer doesn't make anyone else's sinuses less blocked, tiredness vanish or stress and worry disappear, so please feel free to have a cold and don't feel bad about telling me. I will still drum up sympathy and look kind. I'm not about to pull out the cancer card and play top trumps. Plus I've had a cold/tummy bug all week and it's been horrible.
And the other thing is that other than having a life threatening illness I am actually quite well (despite the weird cold/tummy bug) So it's okay to say to me 'I hope you're well'. Being well is what is keeping me going throughout this thing, that and a full time job, three kids, two dogs, a cat, and a loving husband. I feel well. I don't take painkillers, once I'm off the steroids I stop eating like a person possessed. And when the post-chemo week is over I'm actually pretty energetic. I even talk about exercise. Oh yes. I have plans. Unfulfilled. But I plan to exercise a lot.
Cancer isn't easy for anyone and there are topics I'd rather avoid. Some of my fellow patients on the chilworth day unit may love recounting how many people they know who've died, but I hate it. I don't like hearing how desperately hard cancer is and I don't like pity; but I can still empathise, and I need encouragement so please keep saying that you hope I'm well because I hope so too.
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