So back with a bump from my sunny, sunny orange grove. I’ve the post holiday blues. Well actually it’s more than that. I meet the Chemo people tomorrow, it’s just a meeting but it’s the first step of the next marathon (as A. says “it’s a marathon you didn’t even sign up for though!”). I’m scared, really scared of this next bit. I’m sure I’ll be pithy and cheery soon, even about being scared but all I’ve got at the moment is this two line non-sentence. I’m scared.
I’m counting all the stars in my sky because I have people to help me forget these fears for stretches at a time but A. says he can still see it in my jaw, so I’m not fooling anyone.
Until tomorrow, when I can turn the light on and see that this Chemo Monster is really just a coat in the corner (fingers crossed), I leave you with my Mother’s wisdom.
I keep finding her letters at opportune moments, I was meant to be tidying when I found this one – let’s not tell A.
I like the bit about making friends, I’ve heard it can get chatty in the Chemo wing. Presently, I’m not very good at making friends in the C-Club, it reminds me I’m going through cancer (if that isn’t the silliest reason) but I think I need to get over myself and learn from their wisdom. I’m very grateful to Miss B, my FB C-club friend, she’s a little life line – thank you Miss B!
For the record 1) Yes I was really that unhappy for a whole month my first term at uni – I am a big scardy cat, I got over the homesickness and then Mum was diagnosed the first time, 2) can we forgive my Mum for thinking that I am awesome, I think that’s a Mother’s duty and it works better for a pep talk, 3) Sappy as it sounds -parents write to your kids, actual letters, they will find them useful someday, 4) Kids keep those letters, they will come in useful someday…….
Well darling I hope you’ve recovered from the bout of homesickness you had on the phone last night and that your lectures were a bit interesting. As I said just take one day at a time, look your best, smile a lot and I’m sure friendship will come your way. Being a lively member of the group (any group) is always attractive – your natural bubbliness and sense of fun will pull you through and your sensitivity to others will keep you interested and interesting…. No situation is ever perfect for long – that’s what keeps us all striving and no bad situation stays that way – that’s what gives us all hope. Remember that ‘prayer’ ( I don’t think its a particularly christian one) – “may I have the strength to accept what can’t be changed, the courage to change what can be and the wisdom to know the difference” I don’t know if it’s relevant right now, but it’s a good maxim to know.
Eat well, exercise your body and mind and relax before sleeping. And for goodness sake – go to a counsellor and tell them your fears.
As I said everyone has fears at this stage – it’s a learning stairway – you’re discovering it early in life and you’ll learn to recognise it and accept it and control your terror very soon. Good for you.
Nothing worth knowing is easily learnt. Nothing worth having is easily acquired – at least, not in adulthood, I’ve found – I sometimes think walking was the only thing I learned easily – the rest is struggle!
M is having a hard time enduring the music of the Whitebear. Dad is busy with lectures and tutorials and I’m like a headless chicken already – no fun here!
I’m writing this sitting with A in a hammock in an orange grove in the South of Spain. It is as idlic as it sounds, not a cloud in the sky. A is reading a book about science, it is my lovely lot in life to be surrounded by men, with a love of science. Every few pages, A looks up with a ‘huh’ waits expectantly for me to ask ‘what?’ He then reads me a section. I feel I am reading the book as well, which works out nicely because I always meant to.
Until it occurred to me a minute ago that this is probably one of those moment I’ll want to remember, I was reading also. My book is an autobiography about a woman who hikes the Pacific Coast Trail, alone, after her mother dies (no I did it know that fact when I bought the book).
I’ve just read a line where she’s scared on the trail, though she knows she’ll always be safe because her mother has died and that was the very worst that could happen. It made me smile and think about Miss E, my fellow motherless duckling and taker of wonderful photos. Quite soon after I was diagnosed, she had shared how shaken she had felt – “I mean, I thought we were bullet proof.”
I understood the sentiment but somehow my brushes with mortality had the opposite effect. I saw potential hazards everywhere. I became fearful for all my loved ones, practically driving A away with my constant worrying. I never worried about myself however.
I’ve switched locations, I’m now under an umbrella by a lovely turquoise pool, still surrounded by orange trees. The air has that scorched land smell and we have fresh squeezed juice for breakfast. Perhaps because I’m in a place this lovely, perhaps because I feel so warm and safe, or because of the book I’m reading, or maybe because it was inevitable but I’m allowing myself to think about my mother.
When my Mum died, I slowly and painfully became aware of the life events she wouldn’t be around for, the solicited or unsolicited advice I’d not receive, the fights, the love. I’d never get to fully understand what made such a complex woman tick. We’d never ‘do’ weddings or babies – I just never thought that cancer would be another thing on that never ‘do’ list.
Not being a mother myself, I’m not sure how it feels when your child is ill. I’m not sure if I’ll ever be a mother, so perhaps I’ll never know. Either way, I’ll never be able to phone her up exhausted and apologise for everything I put her through. However, I never banked on knowing how it feels to live with cancer or what it takes to get through Chemo either.
There have been times recently, when I’ve been cut to the core at how little I understood about all this, how draining it is emotionally and physically. How all encompassing and how white knuckle scary it is. How sick you can feel (and this is before chemo, fertility treatment and my Ops have been enough). She must have hid a lot, I thought I knew it all, I was 19 and I thought I’d seen all her illness. But I see now that I was still her child and she hid things.
Sometimes I hide things, A always makes me promise that’ll wake him if I wake in the night. I never do and then he’s mad the next day. I always point out, there’s is very little point Us both being awake, he can’t physically do anything and it’s best he’s rested, to deal with everything he deals with in the day. Besides just having him near is soothing, asleep or awake.
Quite soon after her death I went through a phase of worrying. If something else horrendous happened, how could I believe my mother was watching over us, protecting us, as everyone had been at pains to tell me. I reasoned if something bad ever happened, I’d feel like she deserted me twice.
I eventually mentioned this to Da, who kindly and softly reminded me that this is not what we believed. No matter what a comforting image it was, she was not on a cloud, margarita in hand stomping out all mountains in our way. The only way she watched over us, remained with us, was through the love we had for her – the conversations we shared, the life we had all lived together. I am lucky, I have emails, letters and birthday cards too.
Ma taught me a lot about how to deal and some times not deal with cancer. Her dramatic personality, coupled with pretty hardcore steroids, occasionally had explosive consequences. It was her grace, I admired most.
Grace, was the first word I thought of, when I was trying to imagine how to plough on with all this. My Mother was also the founding designer of Cancer Chic, she rocked Cancer Chic hard. Unless it was a really bad day, she was always up and dressed, she always put on a little makeup too. Even in hospital, she requested I come and help ‘put her face on’. These may sound like small achievements to some but trust me, some days they are huge.
Ma kept a journal, hers was a lot more private than mine, but I think it helped keep her sane. She started on a path towards a Masters degree too. Gosh she was strong and smart to boot.
Like animal species the world over (A’s book rubbing off on me) I watched My Mother, to learn the Art of Survival. It was just, at the time, didn’t know I was doing it.
PS there’s now a traditional Spanish trumpeter playing in village below, his music drifting up to us. Oh, I’m wearing a coral red on my toes called ‘Macbeth’ too. Today is a good day.
Yup, I feel sick, hormonal and bloated (darn you fertility treatment, should I ever use these eggs, my future children had better be; sweet-tempered, genius, rock-god, bastions of love, peace, the environment and live in the worlds of Science and Art or I’m sending them back to the freezer).
I thought this would be a perfect time to reveal more golden truths…. A lot of these revolve around social media, ick. I know I could just not look but a) where is the fun in that? b) some days, it’s my only view to the outside world, please don’t blame me for wanting to make the view better or out another window….
Nobody can tell from just looking at you: your mood, your idiot-tolerance level, or how you are feeling mentally and physically. This means you may have to tell them, try and do so politely. I should really get a t-shirt.
Only A. can get away with calling you Eric Bana, even he will need to tread carefully.
Incidentally, you will now totally get the line in Avengers Assemble, when Mr Bana reveals the secret of controlling the Hulk. “I’m always angry”. I can only control the ‘Pulk’ for so long, try and read the signs people, save yourselves.…
Signs include: one word answers, growling, overly sarcastic comments, no signs of humour – at all, actively ignoring you and lastly, actually walking away – ps. don’t follow.
It is truly eye-opening just how many ways the universe will conspire to piss you off.
It feels really good when you bite your tongue, you generally like people – there have been no rage induced incidents yet. This feels akin to winning the Noble Peace Prize, I am often surprised I’m not thrown more parades.
You are so competitive you will compete with anyone for the title of best patient – it is a self given award, nurses won’t pick sides (you’ve tried) …
…You will spend many hours wondering how insecure you have to be, to need this level of love from everyone treating you.
Dad and A. are titans, saints and wonders. Try to remember not to push them too far, especially not just because you are in a bad mood.
Remember your P’s and Q’s, you are not the soul owner of the difficult day.
That being said: Please, please, please, reader, think before you write on Twitter or Facebook about your bad day / worst news ever. Really, REALLY? You are STRESSED about a meal are you? Train late, is it? You have a COLD!! – I going out on a limb here but there are worse things happening to people and I don’t even mean me particularly. I repeat – I can only hold back ‘Pulk’ for so long…
You will sometimes write things on your Blog that will make people concerned that they will say / do the wrong thing. When they tell you this, it will make your heart melt because those who are worried, they are probably not the person it was aimed at.
Some people will surprise you in the worst possible way. You will be better about dealing with it for you. ‘Pulk’ will be roaring on A. and Dad’s behalf.
To follow up, A, Dad and I are the same people we always were. Please treat us as such, if you count us as honest to goodness friends, don’t get weird on us now. It’s more hurtful than you could ever possibly know.
Naps, naps, naps are the elixir of life. Take them often.
Sometimes you are just too tired to do everything you want to do, learn to say No.
Just because you are reading this doesn’t mean you can’t ring me too. As my friend Miss H says, “I can read your blog or I can ring and ask you how you are, I will always prefer to ring.” This is why she is your friend.
You will need to work harder to feel grateful and lucky but you still are, so jolly-well work harder.
The sentence “if you get through this, you will be a stronger than ever” is only ever going to extract a long expletive heavy response along the lines of “ How much stronger do you want me to be?”
Also FYI not cool to use ‘IF’, you may think it shows your cool, “I’m not going to sugar coat or mollycoddle you” credentials, I will only hear “I am a moron”.
Please don’t feel the need to reference everything thus: “it’s not nearly as bad as what you are going through” or “sorry to rant about something so trivial”. I do want to hear your news, and what’s important in your world but I reserve the right to call bullshit if it really is a storm in a teacup / easily solvable.
I am getting bossier and bossier the more restricted I become. It’s like Hitchcock’s Rear Window, but instead of murders – I’m solving people’s lives.
A certain type of selfie really annoys me at the moment. Take a picture of something amazing instead or a person you really love. I don’t care if the pout or toplessness is ‘ironic’ – you look like a chump.
The round-robin “post if you know someone with cancer” status up-dates, are weird. They say a lot more about your need for drama than about any cancer sufferer’s plight.
FYI if we do meet, I am not as grumpy as I seem here, I do not have to talk about it constantly, I will not cry.
This summer is meant to be a hot one (yay) – don’t come anywhere near me if you have sunburn. I will beat you. YOU NEED TO APPLY SUN PROTECTOR (Factor 20 or above, yes even in the UK), often several times a day- shock, horror! It works, if it doesn’t, it is user error. Do you really want to be the loser who can’t even put lotion on themselves? I mean that’s pretty remedial stuff right there. I will beat you and then tell you all about my cancer treatments as punishment.
Reader, please, don’t let life drag you down. Do just one thing to change whatever it is that makes you feel despondent. I wish I’d done more of this. IF you get sick, you will have plenty of time to think about what you’d have changed and feel grumpy about it.
Remember, approx. 98% of the time, it is how uncomfortable you are feeling that makes you grumpy and short tempered. People are not willfully trying to vex you. Perhaps yelling will help but then they will grumpy and yell at someone else – it’s the snowball affect. Breathe Deeply and Walk Away.
It is another beautiful spring day outside. Unlike yesterday, I am writing this post in the waiting room of the BCC (point to cancer- what cancer doesn’t know, is that I’ve got an amazing brownie for after this meeting – point to me!)*.
Dad is reading a paper entitled ‘Presynaptic Spike Broadening Reduces Junctional Potential Amplitude’ – I’ve copied that with out knowing what it means, there are some very pretty graphs on it. I am resisting my desire to contemplate the plug sockets again (they are at an awfully funny height for sockets) and so I am writing this list of truths, rules and top tips**, I may write longer posts on some of them but here goes, in no particular order:
Try, if you can, to prep for your future by going on a roller-coaster, blindfold. This is what results days, tests day or in fact everyday will feel like, the highs and lows are “Cray Cray”.
You will come away from every appointment with a saplings worth of paperwork, proving that cancer is not just bad for you, it is bad for the environment.
You will not be able to comprehend how far reaching a cancer diagnoses will affect your life, present and future – this is a very good thing.
Lymphedema may prove to be a bigger nemesis than cancer. Grrr.
You will worry about money, especially if you are a freelancer. You will then realise that there are people a lot worse off, that you have options and that you are, once again, luckier than most.
Conversely, money worries will probably not stop you spending extravagantly on crazy things because a) it makes you happy, even just for a minute b) why the hell not? Try really hard not to go too wild because…
….You will still have to do everyday, normal things like paying bills – the bank does not know you have just been put on a mental rocket to Mars.
Final note on shopping, try not to internet shop while high on morphine. I, apparently, have a Turkish bath towel winging it’s way to me – from what I remember, it really seemed like the most important purchase of my life at the time. (If I’m being kind to myself I could see it has a defiant shout – that I’ll be swimming again soon). A. once bought a vegetable peeler when coming down from sedation, we already had 2. So I guess we’ve got off pretty lightly, as long as we don’t mention the shoes….
It will take more than breast cancer to convince Dad and A that you should be allowed a French Bulldog – not even when you bat your eyelashes.
Your Doctors (and all NHS staff actually) are titans but they may not know everything at the very moment that you may wish know it. Like your parents before them, they may seem God-like but like you, they are human. They are the best kind of human because they spend their days breaking the worst kind of news. Always keep this in your mind.
The above, is why you will spend you days at BCC trying to get the gruff, scots receptionist to like you…. heres still hoping.
The hospital will suggest you bring someone with you to your appointments, to help remember what is said. However, you wouldn’t take someone who didn’t love you, but because they love you, they may forget too. Don’t worry, between you both, you can cobble it together. BRING A NOTEBOOK.
You will realise just how vain you really are.
You will feel guilty, about a shed load of odd things. This will at times annoy and exasperate your loved ones.
When used judiciously the phrase “who wants to talk about cancer” can bring levity to a situation.
Following on from the last point, only use your C-card for good, preferably funny reasons.
You will promise yourself you will not use your C-card to gain the advantage – with great illness comes great responsibility.
At some point, in a fit of pique, you will break this rule. Don’t be to hard on yourself when it happens.
You will find a lot of humour in life with cancer, just don’t push yourself – it’s surprising how quickly darkly funny can turn simply dark. Advise others of this too.
Medical Professionals are not allowed to find your illness funny. Case in point; when asked about your alcohol consumption (which you will be several times a visit) your answer probably shouldn’t be a) right now? yes, Gin please or b) I am now an alcoholic (delivered dead pan)***. But they must have a a sense of humour or else they wouldn’t make you wait for the Breast Nurse in front of rows upon rows of boxes of fake boobs….
You will start a bucket list (or if that’s too bleak a Life ‘to do list’) when you read it back you will discover a) you will need to be a millionaire b) you are generally a lot shallower than you’d hope and c) you are obsessed with food.
The first 3 questions you will want to ask, upon finding out, will probably surprise you and possibly the BCC nurse you are speaking to. Asking if you can swim while having Chemo as your opening gambit for instance….
You will become a walking cliche, this will piss you off.
Your body will no longer belong solely to you.
Do not be cocky about any test or hospital visit – karma will bite you on the ass.
People will spend a lot of time telling you – you are young. Sometimes this is a good thing, sometimes a bad but because you are so vain it will always feel nice.
This goes for anything to do with your BMI too.
No one will know how to react when you tell them something like this, you wouldn’t have known a week ago, this will sometimes annoy you.
You don’t suddenly become any better at handling other peoples bad news. You will forget the phrases that annoyed you and use them on said people. At some later point, this will really peeve you too.
Always thank your medical team, your loved ones, friends, blog readers and supporters.
So Thank You, Thank You and once again Thank You. Your words of kindness and love fill my days with light.
* I also got no more bad news today – another point to me!
** Let’s please remember the 1 2 3 4 mantras of little blog 1) I hope it doesn’t happen to you. 2) these are my own personal views 3) check your bits and bobs 4) everything is better with cake.
*** Not least because they’ve probably heard it before. Several times.