A year ago today I went to an appointment that saved my life.
A year ago today I was diagnosed with breast cancer.
In some ways it feels like yesterday, in some ways it feels like a lifetime ago. Almost everything has changed in the last year and this year will influence everything in the our future.
It is still so difficult to comprehend that this year has happened, and that it happened to us. We try to get on with life as ‘normal’, but sometimes something jars us into re-realising. Something as simple as a glance in the mirror can catch me unawares – my short hair a symbol of the loss of choice this year, the loss of ownership of my body. Still sometimes when I’m in the shower I go to wash my right boob and there’s a moment of slight surprise when it isn’t there. Weird huh?!
Sometimes Dan and I just stop and say ‘What the f***? Is this really real?’ and yes the cliche ‘Was it all a dream?’ has actually crossed our minds.
It’s been quite a year with a lot of tough times, but there have been a lot of positives to come out of it which we try to focus on. Life has been on pause for a year and we’re not quite ready to hit ‘play’ yet, but we will. We’ve met a lot of wonderful people who have confirmed our faith in human nature. Precious friendships have been appreciated more than ever before. We’ve discovered we are stronger than we thought. We have cried a lot, but not as much as you might think. We’ve generally managed to plough on through with one aim – to be together, us three, stronger than ever and with a future to look forward to.
While it’s a year we would never wish to repeat, we have at least achieved our aim, and we’re working on being content with that rather than frustrated at what we’ve lost.
Just a note to say, thankyou for your messages of concern regarding my last post. I am extremely happy to report that the x-ray is clear! *breathes huge sigh of relief*
My consultant phoned, apologising for the delay in reporting back but she’d been away and then wanted to get the head honcho to read the scan which held things up. Now that I know it’s ok, I can admit to myself and you how much I’d been worrying about it, how every few minutes my mind wandered to what might be lurking within me, how the little voice in my head got louder and even more persistent.
So there we are. In hindsight avery stressful couple of weeks but with a happy ending.
TIlly and I had a break at my parents’ for a few days last week. I hadn’t been there since I went to break the news to my family I had cancer, nearly a year ago. Strange thinking back to the last time I was there – so much has changed since then. Good to catch up with family and friends and good to realise that I’m now well enough to visit, having been unable to for a year. Things change, and as much as at times its felt never-ending, managing to do things that have been impossible for a while reinforce that I am getting better and very much on the road to recovery.
Here I am…I’ve been quiet I know but I’m back! Finally feeling like re-engaging with the world a little. It’s been a funny few weeks. To fill you in, 3 weeks of terrible flu which I couldn’t shift…because of the hangover from chemo. My inability to recover meant my much looked forward to girly weekend in Paris with my darling friend was cancelled…yet only postponed, no more bugs please, Paris awaits me at the end of the month.
My still constant companions of aching joints and numb fingers remain and it’s menopause a-go-go, ooh the glamour of hot flushes, night sweats and insomnia. And my personal favourite, the most incredibly intense fatigue rendering me permanently shattered and running on empty with a 9pm curfew for bedtime. Rubbish! Is this how it’s going to be now? The answer is the frustratingly bland ‘well we don’t know, everybody’s different, we’ll have to wait and see.’ Is there anything I can do to ease the symptoms in the meantime? ‘…erm not really, no.’ Brill.
So that’s a bit frustrating but it is what it is, so suck it up and get on with it I tell myself and on the whole I manage to do so. About 5 weeks ago I developed pain on the right, boobless, side of my chest, from the bottom rib up to and including my collarbone and in my shoulder. I took paracetamol and ibuprofen, swiftly moving up to codeine but nothing was stopping it. An appointment with my consultant followed and thoughts are that it is probably damage to the muscles and bones from radiotherapy. As an aside, when you sign the consent for radio you sign the statement
‘Radiotherapy may damage your bones, may damage your lungs, may cause cancer.’ Excellent, where do I sign?!
Anyway so doc, will it go away? ‘Hopefully, hard to say, everybody’s different, continue with the prescription pain killers and top up with codeine routinely…but we also need to do an x-ray to check it’s nothing sinister…’ Crap.
So I went for an x-ray. Being in hospital, the smell of the place, walking through the corridors on my own to the x-ray department, waiting, then to strip off, put on a gown, be lined up for the x-ray…it really dragged me back to a feeling I hadn’t had for a couple of months. A feeling of being alone, a little helpless in the face of possible life changing news. And yet surrounded by a ton of people in their own world of pain and worry and fear. Of my body perhaps hiding a secret which would be betrayed by the scan. Of being in this vacuum where time stands still, a vacuum that drains your energy and makes the outside world, normality, feel so far away and impossible to be part of. But then x-ray done, shoved out back into the real world, and on with the day. And of course it took all day, going after I’d dropped Tilly off at nursery at 9, making it back only just in time to collect her at 3pm and summoning the energy for fun and games with her, until her bedtime when once complete I can collapse in a heap.
It’s been just over a week since then and I haven’t had the results through. This I take to be a good sign, they’d be rushing me in if it was anything serious, right?! We’ll wait and see but it has been an unexpectedly early reinforcement of what life seems to be now. A dark shadowy figure in the corner wherever I am, the prospect of recurrence. Twinges, pains, anything out of the ordinary will increase the volume of that little voice that’s always whispering in my head whatever I’m doing, wherever I am, that perhaps it’s back, maybe this is it.
And with this soundtrack on going, life goes on. We have had some great times in amongst it all the last few weeks. A weekend of loveliness with super friends who brought their beautiful baby boy and THE most amazing food with them. We’ve had a lovely Easter, really fabulous family time having fun, and that’s what it’s all about. Feeling the love of family and friends, appreciating what we have and making memories with our beautiful little girl who I would go to the end of the earth for.
So while I try to keep that nagging voice to a whisper we continue on, looking forward to a letter arriving to say all is well this time. I’ll keep popping the pills and hope that the pain subsides soon as my body heals from the blasting it received from radiotherapy. And we’ll keep living and enjoying, and look forward to a Spring of sunshine, warmth and good times. With perhaps a little less chocolate eating…?
Well haven’t I been quiet?! It’s nearly the middle of February already, and last year is a distant memory and life is getting back to normal, right? Wrong! Honestly…I’m struggling. It’s been a surprisingly shitty few weeks and I’ve retreated to getting through the day to day, making sure Tilly is ok and not much more.
It turns out having cancer is a bit of a downer after all, who’d have thought it. Last year was pretty horrendous, but an up-side was that I didn’t have much time to think. I was caught up with the practicalities of treatment – the treatment days, the bewildering swirl of side effects, the logistics of childcare and chauffeurs etc etc. All along with the normal stuff everyone has of keeping family and house going. Last year was probably the hardest time for family and friends seeing me look so ill going through the mill, and from what I hear they’ve done a lot of the thinking about it all during that time.
Now, released from the constant appointments and schedules, my brain’s in overdrive. The realisation and constant disbelief that last year actually happened. That the meds I’m on now have increasing and various side effects. That my body has changed forever. And I am at high risk of it all happening again but most probably without such a good outcome. It’s pretty gutting that what we went through last year wasn’t enough to guarantee that all will be ok.
And perhaps it seems ludicrous that this has been a surprise, but it really has. There hasn’t been a euphoric feeling of completing treatment, I guess because treatment hasn’t finished yet and there’s never a big sign off from the hospital to say ‘you’ve done it well done, here’s your medal.’ And looking to the future is actually quite difficult, nothing is the same as it was or how I’d thought it would be. I know it will get better, and it’s still early days and all is still very raw but I know things will get better.
Having had the conversations we’ve had with my healthcare team, I know I’m lucky to have made it through to be here today and to have a future, I know lots of people haven’t been so lucky. But it’s not quite like it is in the movies, that having faceda life threatening situation and survived, the hero now seizes life in the extreme, Carpe Diem and all that. Right now, it’s enough to try to function normally and appear as if things are ok to those around me and in front of Tilly.
So apologies all round for the birthdays and events I’ve missed, the thankyou letters I haven’t written, the emails and texts I haven’t replied to, the phone calls I haven’t made. I’ve been a crap friend this year, thanks for sticking by me and I hope you’ll forgive me – I blame cancer and I suggest you do too!
I can’t quite believe it but active treatment is finished. Soon we embark on the maintenance phase of daily medication but for a blissful eleven days over Christmas, I will be, fingers crossed, free of any medical intervention. We’re looking forward to a happy and relaxing small scale family Christmas with just us three at home.
Appropriately, I finished radiotherapy on the day of winter solstice, a day of new beginnings and looking forward to the future. It was also the day that Mayans predicted apocolypse. I have to say I would have been more than unimpressed if I’d got through treatment just in time for the world to end. But as it was, the date has passed and we’re all still here so all’s good.
When this crappy journey began back in April, we were given a rough schedule of events and when I asked whether we’d be done by Christmas, they said with luck we would be. And we are – just. I’ve managed to be well enough to keep to schedule for all of the treatments, the hospital has kept its side of the bargain.
As predicted the side effects seem to be increasing and will continue to build over the two weeks or so following treatment. I’m incredibly tired and the skin and torso area affected by treatment is much more sore. My throat’s also very uncomfortable as it was caught in the area of treatment. These should all soon subside and I hope to be feeling altogether much more normal by the end of February, or at least that’s the information I’ve been given.
I’m not due to go back to hospital until 1st February, and the month or so between now and then will be the longest I haven’t been there since April. We had a meeting with my oncologist last week, which I’ll detail in a later post, but the headline from it is that they’re very pleased with how everything’s gone, which is good to hear.
The run up to Christmas has almost entirely passed us by but suddenly we find it’s tomorrow. Tilly is very excited and it’s the first year she’s got really into it. And the bribery of her being good so that Father Christmas will come is proving very useful! In the last 3 days we’ve been on a Tilly-potty-training mission, which should have happened much earlier in the year but for obvious reasons we delayed it. She’s done really well, and so far it’s been a very easy process, though requires a surprising amount of energy from us all!
A slight fly in the ointment, and just to top off our year, today (Christmas Eve) Tilly has come down with chickenpox. Ah, 2012 has been brilliant. So far she’s pretty jolly with it, so fingers crossed this remains the case. At least it’s happened at a time when Dan’s home and off work, and we’re not reliant on any childcare to cover hospital appointments etc.
So a Happy Spotty Christmas from us to you all, and again a huge thanks with bells on for all your support.
Here we are, just 2 radiotherapy sessions to go. Over 3 weeks of daily hospital visits have been completed and all has gone pretty smoothly.
Each day the time involved for travelling to and from hospital and having the treatment is about three hours. On a few days I have had other appointments as well, so some days it’s more like 5 hours. In all 21 days including the planning day.
I haven’t driven since surgery, mainly to stop myself doing too much. So 21 days requiring a driver for what is usually an hour’s trip each way…quite an ask. A couple of weeks before radio began I started planning how the month would work. The easiest way to organise it I thought would be to set up an online schedule showing what was required when, send out an email to local friends and see what they could help with. Then hope that I would only have to do the drive, or call on Dan to drive, a few times.
So I sent out the email and within just a few days every day was covered with backups for each day too. Isn’t that incredible?! And also lots of help’s been forthcoming to cover Tilly care all the time I’m out at appointments. Everyone has work, family, general life commitments but they’ve all worked out what they can do when and I am overwhelmed. Again. Thankyou to all of them and their families who have made this month a lot easier.
I can’t pretend the organisation around radiotherapy has been easy. When your head’s a befuddled post-chemo mess and simply existing is exhausting, the last thing you want to do is put together a matrix of chauffeur and childcare solutions. And just when you think everything’s sorted a few things have gone wrong – my driver’s cancelled due to their child being ill or the radiotherapy machine has broken down so my appointment time changes and so all plans for childcare and drivers go out the window – but on the whole it’s worked well. And I am acutely aware how lucky I am that I’ve got the possibility of multiple solutions at my (still numb!) finger tips. A lot of people going through this have very few people to call upon for support which must make things a hundred times harder.
Radio itself has been ok. My skin looks a little sunburnt and I’ve got shooting pains in my ex boob. Each day I’ve had treatment in the morning then come home and usually gone to bed for as long as I could before my childcare ran out and Tilly came home. Sometimes that’s not been possible and I’ve pushed through the day going straight from my hospital trip to collecting Tilly and then on with fun and games until her bedtime and then I go straight to bed myself. The flu I had proved difficult to shake which didn’t help the fatigue. It’s left me with a hacking cough which has resulted in my coughing through a few radio zaps which isn’t ideal as you’re supposed to be still like a statue to make sure the zaps are hitting the right areas. Dan’s had to be away a few days which has proved to be a bit of a struggle but we got through. And we had a myriad of things go wrong with the house and car this month, but hey, we’re here to tell the tale and crawling our way to Christmas.
So all being well, I’ll finish radiotherapy on 21st December and we’ll have a little break until we’re onto the next stage in the new year. Onwards, onwards and hopefully upwards.
Surprising how quickly the new becomes routine, the strange becomes normal. Each morning arriving at hospital, checking in by barcode at the machine, waiting until my name’s called (and mispronounced!) on the tannoy. Then off around the corner to the changing room where I de-robe my top half and put on a hospital gown. There I wait for anything from 5 to 30 minutes for one of the radiotherapists to collect me. Then onwards to the machine.
The flat-bed and the various leg, head and arm supports have been set up to match the positioning that was set for me at the planning appointment. I take the gown off, and lie on the machine bed and the staff line me up to the machine exactly using the light beams and my tattoo dots as reference points. The staff talk over me about measurements and use the remote controls to adjust the bed’s alignment. Then a gel pack is placed over my ex boob and the staff leave the room. The machine whirrs and then buzzes for 30 seconds while the x-rays are emitted. Then the staff return, and the process is repeated a further two times. Back to the changing room, apply lashings of aqueous cream or aloe vera to my torso and back of my shoulder, get dressed, and off home.
The whole process door to door takes about 3 hours, and very kindly, friends have been taking me each day and it’s been great to have the opportunity to catch up. Being driven has saved my energy, which has been a lifesaver as I’ve been left exhausted by this flu thing …and the last 7 months. Tilly allowing, I’ve been having radiotherapy and then coming home and going straight to bed. The treatment affects the right side of my torso from the base of my ribs up to my chin, as well as the right side of my upper back, as the rays targeted at my collar bone travel straight through to my back. So far the skin’s a little tender but ok.
It’s good to have got started and to have 5 out of 20 done. Having flu has put me at a low ebb going into radiotherapy, and mentally it’s been a really hard couple of weeks. Although I’m aware and grateful that we’re so far through this process, it’s taken its toll which is beginning to be brought to bear and sometimes I feel like I can’t do this anymore, that I’ve had enough of treatment and want to magic us out of this crappy situation. But tomorrow is another day, and one step closer to being through this and out the other side.
So onwards, onwards with a shrug and a smile, grateful for what we have and finding the positive wherever we can.