This weekend marked something of a landmark. It was the first weekend that the Captain and I had booked in to trade at a canal event this year. When we sent off the forms it was unclear just how much I would be able to do, given that it was still fairly close to my surgery. However, I am pleased to report, as returns to work go, it was a triumph.
I did need to have a few nap-lets during each of the three trading days. And it is true, I did have a minor meltdown as we came to set up for our first day. But it felt really good to be back and doing something so normal.
We launched our Not Second Rate Raspberry & Rhubarb Jam in support of Breast Cancer Care’s Secondary Not Second Rate campaign and it went down a storm. Even the lovely Richard Parry, CEO of the Canal & Rivers Trust, bought a jar and went away clutching his Taking Care of Your Breasts leaflet. Two pounds from every jar we sell goes straight to Breast Cancer Care and at the end of the year, I will tot it up and announce the amount raised on our website & Facebook pages.
Finally, the Captain managed to make it into the local paper. If you want to read more, see here. I think I may need to remind him who’s business this is … 😉
… but it is also quite dull. Five days post op and our house is still a house of unnatural quiet. My throat and mouth are by far the worst things about this latest date with the operating theatre. My uvula is about 50% longer than normal and likes to drag itself across the back of my throat. Which is as unpleasant as it sounds. My mouth is a bit like the sorest sore throat you can imagine. The one where you brace yourself to swallow your own saliva. It is improving. And it is good for the waistline as I am only really managing to eat variations on mush at the moment which is also quite dull. Ice cream is good but, and here’s something I never thought I would say, there is only so much I feel like.
Medically speaking, there seems to be nothing to be done except wait it out. I have been assured it will get better. And I can see that it is doing so. It is a tedious old business though. All that is to be done is to continue with the mouth numbing preparations, drink lots and wait.
Meanwhile, I rather think the Captain is enjoying the peace. He should worry about all the things I am plotting …
It was quite a year. And one that I am not alone in being glad to see the back of. So 2017 dawns, grey and rainy, and I greet it full of snot and with a hacking cough. My plans for the new uber fit me are temporarily on hold. But I shall return to them.
My efforts to date have seen me shed all of my chemo weight – hurrah! The Captain has given me a fitbit for Christmas so my new obsession is going to be increasing my steps and activity levels. I still have a fair way to go before I reach my health BMI range but I will get there. This stupid cold is not helping. My crappy immune system means I am picking up pretty much everything going. I only got rid of my last cold the week before Christmas. But at least I did not succumb while going through treatment which would have been far worse.
Christmas itself was delightful. I pretty much grinned the whole time. To be fit and well enough to be with family and celebrate was so special. The Captain and I have even begun to plan our boating itinerary for this year. And more to the point, I am even beginning to believe it may actually happen!
Thank you to everyone who made 2016 bearable. It is never going down as my favourite year, but it is definitely the year when I realised how loved I was. And that is a precious gift, my friends. Thank you x
The 30th of November is not a date I relish. I woke this morning knowing that today would be long and drawn out. But I still had a moment to check my social media. As you do. Facebook has an app that, on the whole, I dislike. Sometimes On This Day is nice. Sometimes it brings joy. And happiness. Which is why I have not switched it off. Other times it does not. It is inexplicable to me that I forgot what the date was today. I can only assume that I have been distracted by current happenings. However, Facebook was having none of that. It was clearly desperate for me to remember.
So this morning, as I lay in bed, trying to marshal my thoughts into some kind of order, I was greeted by this:
You see, six years ago, on this very day I decided to go crowd surfing. Without the crowd. As pass times go I do not recommend it. I was not involved in a car crash. I was not the victim of an assault. And nor was I drunk. I simply slipped over. On our drive. In the snow. This led to: multiple fractures; five operations; chronic neuralgia; word retrieval problems; rubbish vision; and an abiding aversion to snow. It also led to something of a re-invention. That need to create something from the wreckage of your former life is a feeling I am very familiar with. The career I was working towards in academic literary research became impossible as my vision did not allow it. And so my business was born. This I do not regret. I love my job. My business is small but perfectly formed. It allows me to work on good days, bunk off on bad ones, and generally it is the perfect way of living for both me and the Captain.
However, you can see why I do not want to embrace a ‘new’ me once again. The very thought exhausts me. I do not believe I have another facet left to explore. I have been there, done that.
Six years on I am in a very different place. I still have chronic neuralgia. I still have dodgy vision. I still have word retrieval problems. Large chunks of my face are numb or experience ‘altered sensation’ (such a euphemistic phrase!). But having thought I would have to wear a paper bag on my head in order not to frighten small children, I am in position where it is not possible to tell the extent of my surgery. Even when I point out my scars. I am not best pleased to be needing the servicing of the NHS once again and feel it is particularly unfair but then life is not fair, is it?
Just now, though, I am terrified that I cannot get back to my chosen way of life. I do not know of a single person who has not talked about cancer changing them in a fairly gargantuan way. Currently I am so tired, the thought of prepping the 20+kg of Seville oranges I should be tackling shortly after Christmas can reduce me to tears. What I am saying? The thought of Christmas can reduce me to tears!
I do not want to change. I just want to get back to me. I have done recovery before. And I do not like it.
The days of post treatment can seem very long and whether it is the dismal November weather, the grim political situation or just the infinitesimally small steps to recovery it can make for a depressing time. I think I am generally of a cheery disposition but I find it hard to remain so all the time. And I know I am not alone in this. Many speak of the difficulties of adjusting to life post treatment.
We are told we need to adjust to a ‘new normal’. To embrace our ‘new selves’. And many find this a pivotal moment in their lives when new ventures are launched, new paths taken and all sorts of developments occur. Personally, I just want the old me back. I have done the reinvention before. I do not have the energy to do it again.
However, I do see the need to address the miserableness. Cancer has taken much from me but I will not allow it to take the joy from life. One of the blogs I read is by the fabulous Liz O’Riordan, a breast surgeon who was diagnosed with breast cancer last year. She writes with warmth, wit and great insight and I love her posts. She has recently delivered a TEDx talk based on her experience which you can see in full here:
I promise, it is fifteen minutes of your life that will be well spent. Ever wanted to know how to support someone with cancer? She covers it brilliantly. Ever wanted to know your porn star name? That too is covered! She also speaks of one her coping strategies for seeing the joy in life. Creating a jar of joy. And this appealed to me. So I have made my own.
I have taken my Emma Bridgewater Trophy Wife urn (the 28th wedding anniversary present from the Captain remember?), because just thinking about it makes me smile. Next to it I have placed a jar of cards and a pen. The card jar was a delightful gift from a friend and is already a variation on this theme. It has pre-printed messages that I have been taking out and reading to cheer me up. I am now re-using them for a double whammy. So the first moment of joy in my trophy jar is written on the back of ‘Only your real friends tell you when your face is dirty’. This pleases me. A lot.
Once I began, I found moments kept coming to me: my darling granddaughter allowing me to wear a yellow duster on my head on Sunday (a rare privilege!); enjoying the taste of coffee again; walking to the shops without becoming breathless. I could go on. Having begun this way, I decided to limit myself to one written one each day but am delighted that this triggers other joyful memories. At this rate, my cup will overflow very soon!
I have had a busy couple of days. That is itself is a good thing. It pleases me. What pleases me less is going to bed last night at 9pm, pretty much sleeping the clock around, waking this morning at 9am and feeling like I had not slept at all. This I do not like.
I have done this recovery from chronic illness malarkey before and it is tedious. In 2010 I had a serious accident. I fell on our drive in the snow, crushing my face which resulted in multiple fractures. I needed five operations to repair the damage and rebuild my face. It took 2 1/2 years to recover. I did not enjoy the recuperation then. I am not enjoying it now.
However, my busy days were good. On Friday I went to visit my MP to ask her to do what she could to campaign for secondary breast cancer. She is going to chase up the CEOs at the two hospitals involved in my care as these trusts are not accurately collecting mandatory data needed to plan services for patients with secondary breast cancer. I wrote to them over a month ago and have since chased up my letters to no avail. She is also going to liaise with Jo Churchill MP who is a great advocate for breast cancer generally and recently questioned the Prime Minister on the subject. You will see from that link that Teresa May’s answer demonstrated her lack of knowledge so I gave my MP a copy of this excellent piece that made front page of the HuffPost. It beautifully explains why we need Government to understand the issues at hand. It was a good meeting and I was impressed by her knowledge and enthusiasm. Of course, time will tell if that translates into action but it was encouraging. I left her with the prototype of the new fundraising jam I have been working on. Introducing: Not Second Rate Jam
This prototype was using Raspberry & Apple Jam but the real McCoy will be Raspberry & Rhubarb and will be available next year. Details will follow.
Also on Friday I signed up to Slimming World. I need to get my BMI down to recommended levels before my next surgery and I knew from friends that there was a very supportive group locally. It is a little earlier than I intended to do something so formal but my second born has voiced an intention to do likewise so it is something we can do together. It felt a positive step and I have enjoyed tackling cooking and food prep once again.
Yesterday, the Captain and I took a trip to visit my sister which was a delight. Thanks to the Captain’s serious and very inconvenient cat allergy we have not been able to do this for some years. But a recent accidental discovery meant it was worth another shot. The whole thing can be declared a success. So long as we kept to non-carpeted areas and kept it short it was possible.
These two days made me feel normal. Today not so much. But there is still fun to be had. I am anticipating the visit of an old friend with great relish and my first born and family will shortly be arriving with fireworks. Excellent.
We have fabulous friends. I love you all. You have all been amazing. You have all given of yourselves so much and for that we are incredibly grateful.
One set of aforementioned fabulous friends allowed us to share their beautiful summer home, Criannan, for a week just before half term. Set in the foothills of the Cheviots, this cottage could not be anywhere more perfect in my opinion. Northumberland is part of my upbringing. I moved around a lot as a child and arrived with my family in Northumberland as a stroppy teenager believing that Hadrian had built the wall to keep penguins out. Imagine my horror when I discovered we were living north of the wall! However, it grew under my skin and burrowed deep into my heart. The wide open skies, the wild beaches, the untamed weather and sheer vastness of nature feed my soul in a way no other place has ever come close. I feel rooted here. Grounded, body and soul. To have the opportunity to return and heal here at this point in my life was very special indeed.
I spent my adolescence at the southern end so having in week in its northern reaches was lovely. We drove along Roman roads, tripped over castles,
skipped along beaches,
gawped at sumptuous paintings in implausible places
and supped our way through many a tea shop. And each night we return to our cosy cottage, tucked away for the night in the warmth and comfort of our friends hospitality.
This magical place is available for rent at exceedingly good rates and I can thoroughly recommend a stay here. Every last thing is thought from the welcome basket of local produce to the array of books, dvds and games or the well equipped kitchen with underfloor heating. And the views! Oh my, the views! See the picture at the top for what we saw each day on waking. What did I say? Magic. ‘Criannan’ means Summer Place in gaelic, but for us, it will always be our Autumn refuge.
For more information, see here: http://www.criannan.com
You may have noticed the lack of posts recently. It is not without reason. I am really struggling with this stage in the proceedings. I know. Ridiculous, right? I have finished chemo, I do not need radiotherapy, my prognosis is even good. I mean just look at the above statistics. There is every reason for optimism. Every reason for hope. And yet have I have been wading through feelings of misery.
I want my life back. I am tired of looking and feeling like someone I do not recognise.
I am taking steps in that direction but it is going to be a slower process than I would like. And patience has never been one of my virtues.
I had a bad night. Sorting out my pain control is taking more time than I thought so the night was long. With little sleep had. And then I could hardly move when it was time to give up on the pretence at sleeping. Turns out the plastic coated starch sheeted hospital bed had its bonuses: it moved continually. One of those new fangled pressure relieving mattress thingies that not only relieved my pressure, it also kept my muscles from seizing up. Handy.
So I started the day grumpy. And weepy. By 10am I attempted a nap. Just as I dozed off, the plumber working on our One Day Possibly A Kitchen (because I like to do my breast cancer & surgery with building work and no kitchen, how about you?) drilled a hole through mains water pipe. The Captain was out. Buying Soft & Comfy bras (mm mmm!) for me. The man is almost a saint. But he was out so canonisation will have to wait a while. My lovely Mum had to scurry around mopping up the vast flood while the stop cock was located. Of course, the part of the mains severed meant that water to the whole row of terraces was cut off too. How to make yourself popular with your neighbours. Now we are a few days back from where the day began on the kitchen. But hey, it could be worse, I could have cancer. Ah yes. That old chestnut.
From then on, every time I nearly napped, the phone rang. Or the door went. Or a drill started. And so on. But all was not lost. My fab sister came to see me and that saved the day from being a total right off. Between us we have come up with a pain plan which should help. And she nearly washed my hair. But fortunately remembered about the lack of water just in time.
Tonight I have more drugs. And am optimistic that maybe I will actually sleep. This would be good. I am tired of being tired. I am tired of waking in a hot sweat that has gone cold, leaving me shivering. I am tired of itchy skin. Twitching shoubsicle aside I am hopeful that the drugs will knock me out sufficiently for not only the pain to be a distant memory but for these other irritations to leave me unawares.
This recovery malarkey is weird. Anyone who has had major surgery will tell you that. One minute I feel fine with the ability to take on the world and energy to spare. Next I am weeping with exhaustion as I shuffle my shawl clad old lady body back to bed for a nap. There are, however, several things that I am finding peculiar to this experience.
The smell. Oh. My. It is not like I wasn’t worried about this before. I have already mentioned it on here. And more than once to those around me. My surgery has involved my armpit. I cannot use scented products there or anywhere near any of my scars. For how long I am not sure. Pity those around me. They say they cannot smell anything. They say all is well. But they would say that and I am not sure I believe them. Especially as I am almost knocked out by the noxious fumes every time my left arm so much as twitches.
Which brings me on to my next point. In order to create my new boobsicle (it is not large enough to be a fully fledged breast yet), muscle has been taken from my shoulder. Imagine the scene: my shoulder wakes up one day knowing it is a shoulder; mid morning it is rudely assaulted, severed with sharp implements and finds itself pushed into a mound on my chest; by evening it is expected to think of itself as a breast. Not surprisingly it is having a crisis of identity. I was told to expect this. And it makes me giggle every time it happens. When I have been using my arms for nothing major, typing or holding a cup or the like, my shoulder/boobsicle muscle (shoubsicle?) begins to twitch. I have a twitching shoubsicle. I have not yet witnessed this phenomenon but only my lack of speed in the disrobing department is stopping me. I really think if it carries on a set of fairy lights and some tassels will be in order.