I just gave my daughter Natalie a goodnight cuddle. She is 6 going on 16 and incredibly stubborn, independent, intelligent and often grumpy. She is also extremely perceptive and caring. She smelt of soap and shampoo and strawberries, and she was almost as soft and warm as the day she arrived in the world, with a curious frown like she couldn’t quite work out what she was doing here. She is one of the three reasons I’m fighting Genghis. I adore her. I could drink in her smell all night. She is beautiful and she is mine. Love love love love love.
I know, I know. I’ve posted a lot about the people I love. But you can’t be too grateful. And it makes for a good Top Ten. Don’t hate me if you’re reading this and you’re not in it. That doesn’t mean I don’t love and appreciate you. I do. Very much. But these are my top ten people in my fight against Genghis:
1. My husband. He has been amazing in every single way. He has looked after me and the kids, cooked, organised, been there, been strong and held my hand throughout. He is the love of my life and I adore him.
2. My mum. My inspiration. She got through this. So will I. She gives me the strength to fight it.
3. My oldest and dearest friend, Hannah. She too got through this. She just gets it.
4. My beautiful and wonderful sister in law who is as close to me as a blood sister. She knows just how to help and never expects anything in return.
5. My BC twin, Jo. She sustains me with positivity and never allows me to dwell on bad thoughts. She has a fabulous sense of humour, which helps a lot.
6. All my other family members (bit of a cheat to lump them together, but it’s my prerogative!). Dad. My in laws. My brother and his girlfriend. All caring. All helpful. All on hand.
7. Our wonderful nanny Sara. I couldn’t have coped without her.
8. The doctors and nurses who have looked after me. Particularly Bernie the amazing BCN, Evelyn the chemo nurse and the lovely lovely night nurse at the Welly who let me sleep the night after my lumpectomy and didn’t wake me to do obs.
9. My team at work and particularly Pat who has never once complained about me not pulling my weight, but picked up my slack and got on with it.
10. There is no single person in this spot. All of my friends have been important to me. All of the messages of support and love have helped me. All of the offers of help have sustained me. Just by getting in touch you have made a gigantic difference to my well being.
Here are what I consider to be the 10 worst words in a breast cancer patient’s dictionary:
=1. Metastasis. The last thing you want to hear out of a doctor’s mouth unless accompanied by the word “no” or “none”
=1. Spread. Same reason.
3. Reoccurrence. What we all fear most after metastasis and what we secretly all feel is inevitable (at least on our bad days). How can the doctors be sure they’ve got rid of all the cancer cells? They can’t. So the cancer will surely reoccur. Geddit?
4. Scan, test. Gosh how scans and tests fill us with dread. They inevitably conjure up a certainty of metastasis (see above). And therefore death. Waiting for the scan is bad. Waiting for the results is worse. By the time you get the results there is no possibly way (in your head) that they can be good news.
5. Cannula. Even before chemo starts, the number of tests and scans you have to have leave you feeling and looking like a pin cushion. For most ladies chemo just makes this worse as their chemo is delivered via a cannula. This ain’t easy. If you’ve had lymph nodes removed from one armpit you can’t be cannulated in that arm because of the risk of lymphodema. Chemo can make your veins collapse or harden or hurt, so often you can’t be cannulated in the same place twice. Some more ladies find that nurses take multiple attempts to cannulate them. It hurts.
6. Lump or tumour. Most ladies I know can’t use the word. They have to give it a name. Mine was Genghis. Others have been more direct – c***, Mr Lumpy, and so on.
7. Mortality rates. No need to know. Thank you very much.
8. Side effects. We know all about these. We know when they will arrive, what they will feel like, when they will die down. We can’t face describing them, as words don’t explain them properly. Take it from us – they are nasty and numerous and no one avoids them.
9. Hair. We all obsess about how much we will lose, from where and when. When will it grow back? How? Let’s just ditch the word.
10. Brave, inspirational, amazing. Thank you for calling us that, but we aren’t. We are just dealing with this whole shitty mess in the only way we can.
So here are my top ten breast cancer hates.
1. Fatigue/feeling weak. I’m such a doer. I can’t stand being immobilised. I get frustrated and depressed. It’s not easy to just sit back and do nothing.
2. Chemo brain. The only thing that I really value about myself is my intellect. Chemo brain takes this from me. Can you imagine how sad that makes me feel?
3. Uncertainty. When will I feel better/worse again ? Will the treatment work? When will the next stage start? Will the cancer go for good? Have I made the right decisions over my course of treatment? Just a few of the many uncertainties….
4. Lack of decent sleep. It plays havoc with your body and mind. And it contributes to numbers 1-3 above. There’s little else guaranteed to make the days drag on than a poor night’s sleep.
5. Hospitals without windows. I’ve visited too many. I have my chemo in a windowless cubicle. I have seen my surgeon on occasions in a windowless basement. We need light!!! We are like little plants – light helps us to view and flourish.
6. Comparisons. “My friend had breast cancer 10 years ago and she’s doing fine”. Good for her. I know that’s meant to make me feel better but it doesn’t. Was your friend triple negative like me? How big was her lump? What chemo drugs did she have? How many nodes did she have involved? No idea? Well then, the comparison won’t help. Sorry to be blunt.
7. Secret Facebook campaigns to “raise awareness” of breast cancer. You know the ones. You get a secret message telling you to send it on to 70 close friends then put a heart on your FB page, to raise awareness. “And remember, it’s women only”. There are so so many things wrong with this that I almost don’t know where to start. If it’s secret, how does it raise awareness? How does it raise awareness in any event? And don’t men get breast cancer too? How does it help me or anyone like me if you stick a heart on your FB page then walk away and forget about it? Grrrrrrrrrrrrrr.
8. Overbearing advice. “You MUST do/eat this…..I read an article and I know it will help”. Pah. Really?
9. The “are you dying” voice. Usually accompanied by the head tilted to one side, and hushed tones. Meant to convey sympathy. Answer: we are all dying. It’s the only thing that’s certain for all of us.
10. The people who just don’t bother. Those people you think are friends, but haven’t bothered to pick up the phone or write a card since diagnosis. I appreciate that life is busy. I appreciate that it might be hard to find the words. But at least try. Or else don’t bother expecting anything more from me. Ever.
Here’s another quick top ten. Top ten best things to eat after chemo:
2. White carbs
3. Super fresh and juicy fruit
4. Salty food
5. Pineapple (great for dealing with a manky mouth)
6. Ice cream
8. Boiled sweets (same reason as pineapple)
10. Anything you damn well fancy.
Yesterday I got a bit worked up about a chain message in Facebook allegedly in aid of breast cancer awareness. I had a bit of a rant about how pointless it was and listed some of the side effects from chemo that I am experiencing and that the chain message in no way tackled. I think I shocked some people as it was the first time I’d been so openly negative about what I’ve been experiencing. In typical fashion I then felt guilty about having made anyone reading my post feel uncomfortable.
On reflection it struck me that I’ve not yet documented in one place all of the delightful side effects I’ve experienced from chemo. It feels like an omission. If I’m going to be honest about this whole thing, I need to be open about it all. In the future, when I gloss over the chemo stage, it’ll be useful to be able to look back and remember how it really was. So here we go. My own personal encyclopaedia of side effects from both AC and Taxol.
– nausea (particularly my first cycle when I wasn’t given cyclazine)
– fuzzy gooey wading through treacle chemo brain
– constipation at the start, loose smelly poos at the end of the cycle
– very dry mouth, sore mouth
– hair loss
– sore hands and feet (the start of hand foot syndrome)
– acid reflux
– runny eyes and nose
– stiff neck especially at night
– smell sensitivity
– mucus in mouth
– fatigue – worse than on AC or possibly cumulative
– bone ache
– muscle ache
– inability to concentrate/ remember chemo brain
– nail ache/soreness
– hand foot syndrome
– skin on feet peeling
– dry eyes
– bad taste in mouth
– bleeding gums
– blood up my nose
– tightness in chest
– heart racing and blood pressure up
– numbness in fingers and feet (peripheral neuropathy)
– swollen joints especially my knuckles
– hot flushes
– lots of wind
Quite a lot, then!
I bloody hate the runs. They wake me up in the night. They have me dashing down corridors at work. Phone calls are cut short. Conversations are abridged. Yuk. It is debilitating and embarrassing and not one of those side effects that you can moan about out loud.
So much of the time since being diagnosed with BC I have found myself feeling guilty. I know it’s not my fault and I don’t really think the guilt is guilt about being ill. It is guilt about the effects of me being ill on other people. In the spirit of my Top Ten theme, here are ten things I feel guilty about.
1. My wonderful husband bearing the burden. He gets up with the kids on the weekend while I languish in bed trying to find the energy to join them all. He deserves a lie in too but I can’t give him that luxury.
2. Not having the energy to run around with the kids so much on weekends. I don’t think Joey notices all that much but I know Tali does and I know it makes her sad.
3. Not having much quality time with my husband. Weekdays are all about work then getting the kids to bed. I can just about sit at the table for dinner but after that I’m done.
4. The house isn’t as tidy as I would like. To be fair, no one except me cares all that much. But I do and I feel guilty about it.
5. Putting my parents through this. I imagine that watching your child go through cancer treatment is horrendous. And it must be worse because my mum went through it only five years ago so there is no hiding the worst of it.
6. My team at work and particularly Pat. I joined the firm in part to share the burden of leading the team with the wonderful Pat. I feel I’ve let her down. I’m hardly a great help at the moment.
7. I feel guilty because I moan when there are people who are far worse off than I am, or who don’t make it. Their stories make me thankful but also guilty.
8. This one is stupid but true. I feel guilty when I read about my fellow BC sufferers who get less well treated than I do because they are on the NHS and I am treated privately. Most people have great treatment on the NHS but sometimes things aren’t amazing – like they are on a noisy ward, or they don’t get such good meds for dealing with side effects.
9. Wanting to be alone some of the time. I’m just plain knackered and I can’t be bothered to talk all the time but I can’t say that to people who are helping me and wishing me well.
10. Not being able to give blood ever again or be an organ donor. Giving blood was one of those small things I could do to pay it back. Now I can’t and it makes me feel awful.
Being on chemo is a bit like having PMT in lots of ways. No wonder, as they both mess with your hormones. One of the worst things about this is feeling the opposite of how you (and others) think you should feel. I feel gung-ho about things that would turn others into shivering wrecks – after all, there isn’t much that is worse than cancer, so I don’t sweat the small stuff. But I also find myself an emotional wreck on days when others might imagine I’d be all smiles. Today is a great example. I’m scheduled to have my last chemo tomorrow so I should be happy as anything. But instead I feel teary and sad. The smallest thing is upsetting. I’m upset because I feel upset. And if that’s not contrary, you tell me what is?
Today I have earned my chemo red carnation.
At Oxford, when you do your exams, you wear a carnation. White for the first, pink for the middle, red for the last. Those people who walk out of Exam Schools with a red carnation get showered with champagne and gifts. You know that you have got through something monumental and very difficult. You know that the light had appeared and the tunnel is behind you.
I feel like that today. Despite the challenges ahead, I feel that I have passed through fire and brimstone. I have leaned over the precipice. I have stared into the abyss. And I have got myself through. With family, with friends, with strangers, with amazing doctors and nurses, and with sheer gut and determination, I have gone straight through a very tough chemo regime with no breaks, no hospitalisation and only a few tears.
I am winning. Not Genghis. I will triumph. Not Genghis. I will go on.