So I have had some pretty shitty news. As you know, a few weeks ago I went into hospital for a preventative oophorectomy, to remove my ovaries and fallopian tubes in order to prevent me from getting ovarian cancer to which I am genetically pre-disposed. After removing them, they sent them off to the lab, and unfortunately ovarian cancer had already started to grow. So now I'm facing another few months of treatment to tackle this second cancer diagnosis, just as I was starting to feel strong again after beating breast cancer.
It will all start on Tuesday (yes, they're moving fast!) with some more surgery. This time it's a significantly more major procedure. They will open me up properly from navel to chest and remove a whole bunch of my insides: my uterus, cervix, all my lymph nodes and my omentum, which is part of the peritoneum, which is the layer of tissue which keeps all my organs in place (hopefully they won't move around too much after it's gone!). Also, while the surgeon is in there, he'll take a look around, and if he sees anything dodgy he'll take that too. The operation will take about 5 and a half hours, then I'll be in the HDU (High Dependency Unit) for a couple of days, and then on the ward for about a week before they'll let me go home. They'll send everything they remove to the lab again, and then we will know 100% what we're dealing with.
And then three weeks later I will have to start chemotherapy again. This time 6 rounds of chemo, every 3 weeks as before, which should take me up to September sometime. The drugs for ovarian cancer are different from the ones I had for breast cancer. I will be having carboplatin and paclitaxel. So the side effects may be slightly different, but the basics are the same (fatigue, hair loss, damage to nails and skin, compromised immune system etc).
Needless to say, I'm gutted, and Tanai and I have been quite upset these last few days. It just seems so frustrating that when I'm finally feeling strong and we are starting once more to talk about the future and get excited about things, that I get kicked down once again by cancer. But, in my usual approach to these things, I am determined to fight it and do my best to get through it once again. I'm seeing it as a bump in the road rather than a complete disaster. Plus, I'm going into it with my eyes open this time, having been through treatment once before. This will have its differences, but I know I can get through it. And I will actually use my learnings from last time to tackle it slightly differently this time.
I will try to exercise much more through chemo, if I can handle it with the fatigue. Last time I had chemo I put on 10 kilos (a stone and a half) and it's taken me a year and a half to almost get rid of it all! Now that I'm in medically-induced menopause and on Tamoxifen, combined with my residual cancer-related fatigue, it's much harder to lose weight, so I'm going to try to avoid putting too much on during treatment. I will do little lunchtime walks to Primrose Hill and gentle exercises at home, once I'm healed from surgery. I will also ensure I eat a healthy, nutrient-rich diet. I do this anyway, but I will be conscious of it much more, and won't be as indulgent as I was last time during chemo. Also my hair has just started to get to a length where it's feeling like a hair style again! So I'm going to attempt to keep my hair. I will only wash it once a week and tie it up with headbands, and hope that it only thins, rather than comes out completely. This may be a pipe dream but I shall try! At least I have kept all my headscarves from last time if it does end up coming out.
The good news is that a CT scan I had on Tuesday shows that it's unlikely to have spread. I have a high grade cancer, which means it's fast growing and aggressive (as was my breast cancer) but it feels as though I've caught it early and I have every chance of beating it. I will have to postpone my preventative mastectomy, and hopefully that won't cause me similar problems, but I'm still planning on having that done as soon as possible.
As with last time, my employer is being very supportive and, once I'm recovered from surgery, I'm planning to work throughout treatment. However, I'm due to run out of paid sick leave soon, so one of my biggest worries about all of this is about finances. So I've decided to put myself out for small freelance jobs -- proofreading, copywriting, baking, strategic planning -- basically anything I can put my mind to in my spare time. Hopefully I can ensure we can make ends meet.
The other change this time is that I will be more willing to ask for help. Tanai and I shouldered the majority of the burden ourselves last time, and we are both still exhausted from that. Tanai especially as I couldn't do as much. So this time we will be putting the word out and asking for help. I'll put a post up in a couple of weeks with more specific requests for support and for paid work for me, but in the meantime any offers of healthy home-cooked food are very welcome. I have not had time to fill my freezer with batch-cooked meals and I want to eat as healthily as possible. Tanai is a great cook and I know he can cook for us both, but it's a nice way to ease the burden and help us out financially at the same time.
Anyway, that's enough info for now. First things first: I need to get through Tuesday's surgery and recover from that. Then once I'm home I'll do a bit more logistical planning and will post again with more info.
It sucks, but I'm feeling hopeful and as strong as I can be in the circumstances. And so very glad that I pushed and pushed to have the BRCA test after my oncologist said 'no' three times, and then once I had a positive result, to immediately get the ball rolling to have my ovaries removed. I have given myself the best possible fighting chance. Now our NHS have to do the rest.
Showing posts with label discoveries. Show all posts
Showing posts with label discoveries. Show all posts
Saturday, 30 March 2019
Wednesday, 4 October 2017
Lessons and revelations from chemotherapy
Today marks the official end of my chemotherapy treatment. It's been three weeks since my last dose, but unlike before, there is no top-up today of the poison which is also saving my life. My body can continue to recover and rebuild, and I'm busy regaining strength and energy in time for my surgery on 24 October.
So long, farewell, chemo. It's been... well, shit, to be honest, and I'm bloody glad to see the back of it! Now, I know I've been putting on a brave face (literally, in the case of drawing on eyebrows), but I feel as though I should at least write one candid post about the effects and lessons of my six months of chemotherapy. You'll laugh (I'm kidding myself if I think 'with' me, you'll laugh 'at' me), you'll cry, you'll wince, and you'll hope you never have to go through it yourself. And I hope you don't, I really do, although if you do, I'll hold your hand every step of the way. It's shit, yes, but I survived it, and thousands do, but we develop a sick sense of humour and lose all dignity in the process.
One of the words most commonly used to describe chemo by people who have been through it themselves is 'doable'. As in: 'it's awful, but it's doable'. This has always intrigued me, what does 'doable' even mean? It's such an insipid, unassuming word. It has no sense of the horror of chemo, but it's factually correct. I suppose chemo is indeed 'doable', but hiding behind that word is a whole storage locker of pain and indignity. Strangely enough, I will probably find myself using that word to describe it in future. I did it, it's doable, I'm still here to tell the tale.
I've learned a few lessons over the last six months, valuable lessons about myself and my relationships, and I've experienced things I never want to experience again. So here are the fruits of my chemo education.
A little caveat: everyone's response to chemo is completely different, regardless of their regimen. I've learnt this through many online conversations in my support groups and with women I've been put in touch with, so there's no rulebook (and there appears to be no logic either) but here is my honest and frank experience.
Menopausal symptoms, the main one being hot flushes, have given me a new-found empathy for women going through the menopause. Hot flushes just come upon you suddenly, your entire body temperature soars and you're sweating all over, then a few minutes later you're shivering with cold. As this is happening regularly through the night as well as the daytime you can imagine how this is affecting my sleep. And when your body is trying to heal itself, sleep is something it really needs.
So long, farewell, chemo. It's been... well, shit, to be honest, and I'm bloody glad to see the back of it! Now, I know I've been putting on a brave face (literally, in the case of drawing on eyebrows), but I feel as though I should at least write one candid post about the effects and lessons of my six months of chemotherapy. You'll laugh (I'm kidding myself if I think 'with' me, you'll laugh 'at' me), you'll cry, you'll wince, and you'll hope you never have to go through it yourself. And I hope you don't, I really do, although if you do, I'll hold your hand every step of the way. It's shit, yes, but I survived it, and thousands do, but we develop a sick sense of humour and lose all dignity in the process.
One of the words most commonly used to describe chemo by people who have been through it themselves is 'doable'. As in: 'it's awful, but it's doable'. This has always intrigued me, what does 'doable' even mean? It's such an insipid, unassuming word. It has no sense of the horror of chemo, but it's factually correct. I suppose chemo is indeed 'doable', but hiding behind that word is a whole storage locker of pain and indignity. Strangely enough, I will probably find myself using that word to describe it in future. I did it, it's doable, I'm still here to tell the tale.
I've learned a few lessons over the last six months, valuable lessons about myself and my relationships, and I've experienced things I never want to experience again. So here are the fruits of my chemo education.
A little caveat: everyone's response to chemo is completely different, regardless of their regimen. I've learnt this through many online conversations in my support groups and with women I've been put in touch with, so there's no rulebook (and there appears to be no logic either) but here is my honest and frank experience.
As I've mentioned before, having chemo is like spraying your entire garden with bog-standard weed killer because some pesky weeds killed your rosebush. You don't know how far the weed seeds or roots may have spread, but you don't want the weeds to kill anything else in your wonderful garden, so you take no chances, and you blast the whole thing with strong weed killer. It's not very targeted, but it's certainly effective.
Side effects of chemotherapy:
Side effects of chemotherapy:
So let's start with the obvious: hair loss. I've been rocking the headscarves for a few months, so it's clear I've lost the hair on my head. But hey, I also learned that hair is not just an aesthetic thing, it's also actually kind of useful. Eyelashes and eyebrows have functions. Not only does my face look weird without them, but I keep getting things in my eyes these days, and they are constantly watering. The loss of my nose hair is super annoying, as I now have a permanent drip from the end of my nose. It drips on my notebook, or into my dinner, totally unannounced. And, TMI, hair 'down there' is also useful. Why on earth people pay to have it removed in its entirety is beyond me. I want it back please! Sadly, the leg hair is persistent, no silver lining there.
Then there's the fatigue. It's very hard to describe but I've never experienced anything like it before. And it has different stages. Usually for the first few days after I've had chemo, I have immense fatigue, I feel tired all the time and usually don't leave the house for at least a few days. When I do try to go for little walks I can barely make it round the block before I have to sit down on a bench. And I have a fog behind the eyes, and need to nap lots (gotta love naps!). I don't have the strength to open the coffee pot in the morning, I'm dizzy and often can't walk without holding onto the walls. I take baths instead of showers because I can't trust myself to have enough balance to stand in the shower. I slowly regain energy and strength as the days go by, but never to anything remotely like even 50% of my 'usual' energy. I practice energy conservation (lifts not stairs) and have to make tough decisions about what I spend my energy on (ie if I go into work, that uses up all that day's energy. Usually a walk around a gallery exhibition floors me, etc). Even having a conversation is exhausting. For someone who is used to running around doing a million things a day, the fatigue has probably been the side effect that has impacted my life more than any other. And I don't have the language to describe what it feels like ('fatigue' just doesn't cut it). I find myself saying 'I'm exhausted' to people and they just nod and say 'mmmm' and I know that they have absolutely NO IDEA what I'm talking about.
The dehydration is intense. When I first started chemo, there were women in my support groups sharing tips on how to make water taste interesting. I laughed them off, thinking, 'I love water! I drink loads of it already, I'll be fine'. Not so. When you have to drink litres and litres of it each day it starts to get incredibly boring. No, more than that, I'm bloody sick of it! It makes me gag. So I had to try everything to make it taste interesting: diluted fresh orange juice, elderflower cordial, a plethora of interesting teas. And my skin is completely dry all the time, I've never moisturised so much in all my life. I've invested in a stash of 'Moo Goo' products, which are lovely and completely natural, free of nasties such as parabens etc. I'm obsessively moisturising my hands a million times a day, and my lip balm addiction has intensified. I put a spoonful of coconut oil in my bath. I'm applying nail oil to my nails and cuticles a few times a week, because, oh yes, my nails are getting dry and brittle, and are slowly peeling off.
On that note, I lost my first toenail last week. Yes! They're just coming right off. Fun times.
Everything takes a million years to heal. I have some mosquito bites on my leg which have been there for almost three months. If I accidentally cut myself, my blood just doesn't clot properly, and the wound takes weeks and weeks to heal. I put this down partly to my low neutrophils and white blood cells, as my body doesn't really have the mechanism to heal itself well. Interestingly, I was warned that this would make me more susceptible to catching infections, but ironically my own worst enemy has been my own body. The main things that have knocked me down are things which regularly exist happily and silently on my own body but have been able to make me ill because my immunity is compromised (such as the staphylococcus aureus I got all over my skin). If I so much as walk down the street I get blisters on the soles of my feet, and woe betide my hands if I don't wear rubber gloves while washing up.
My digestive system has been shot to pieces, every aspect of it. My tastebuds have changed, my eating habits affected, my tolerance to spices severely reduced and my cravings for beige food dramatically increased. And don't get me started on the other end of the digestive system. Let's just say I have 7 different types of laxatives in my medical cupboard now. Yes, seven.
Changed eating habits and lack of energy have led me to put on 6 kilos over chemo. I feel sluggish and most of my clothes no longer fit me. I'm looking forward to getting fit and healthy again. I am, however, grateful that I've been able to keep eating and feeding my body to give it the best possible chance to maintain energy and nutrition. Many people get such sore mouths and heaps of mouth ulcers during chemo so they lose weight due to lack of ability to eat. I'm very happy that it's been the other way round for me.
I get random nosebleeds all the time and there's nothing I can do about them. They won't clot, my nose remains dry and sore and I can't predict when they will happen. A couple of times they've happened in pretty embarrassing situations but I've always got tissues on me so I've escaped any major dramas.
Chemo brain is real. Yes, the cognitive impairment has been strange for me, especially as someone who prides herself on being articulate and decisive. At its worst it has been crippling: forgetting the words for things, forgetting how to use the oven, struggling to string a sentence together. I've developed coping mechanisms and workarounds, but this is one they say can linger, and I'm not looking forward to that.
On that note, I lost my first toenail last week. Yes! They're just coming right off. Fun times.
Everything takes a million years to heal. I have some mosquito bites on my leg which have been there for almost three months. If I accidentally cut myself, my blood just doesn't clot properly, and the wound takes weeks and weeks to heal. I put this down partly to my low neutrophils and white blood cells, as my body doesn't really have the mechanism to heal itself well. Interestingly, I was warned that this would make me more susceptible to catching infections, but ironically my own worst enemy has been my own body. The main things that have knocked me down are things which regularly exist happily and silently on my own body but have been able to make me ill because my immunity is compromised (such as the staphylococcus aureus I got all over my skin). If I so much as walk down the street I get blisters on the soles of my feet, and woe betide my hands if I don't wear rubber gloves while washing up.
My digestive system has been shot to pieces, every aspect of it. My tastebuds have changed, my eating habits affected, my tolerance to spices severely reduced and my cravings for beige food dramatically increased. And don't get me started on the other end of the digestive system. Let's just say I have 7 different types of laxatives in my medical cupboard now. Yes, seven.
Changed eating habits and lack of energy have led me to put on 6 kilos over chemo. I feel sluggish and most of my clothes no longer fit me. I'm looking forward to getting fit and healthy again. I am, however, grateful that I've been able to keep eating and feeding my body to give it the best possible chance to maintain energy and nutrition. Many people get such sore mouths and heaps of mouth ulcers during chemo so they lose weight due to lack of ability to eat. I'm very happy that it's been the other way round for me.
I get random nosebleeds all the time and there's nothing I can do about them. They won't clot, my nose remains dry and sore and I can't predict when they will happen. A couple of times they've happened in pretty embarrassing situations but I've always got tissues on me so I've escaped any major dramas.
Chemo brain is real. Yes, the cognitive impairment has been strange for me, especially as someone who prides herself on being articulate and decisive. At its worst it has been crippling: forgetting the words for things, forgetting how to use the oven, struggling to string a sentence together. I've developed coping mechanisms and workarounds, but this is one they say can linger, and I'm not looking forward to that.
Menopausal symptoms, the main one being hot flushes, have given me a new-found empathy for women going through the menopause. Hot flushes just come upon you suddenly, your entire body temperature soars and you're sweating all over, then a few minutes later you're shivering with cold. As this is happening regularly through the night as well as the daytime you can imagine how this is affecting my sleep. And when your body is trying to heal itself, sleep is something it really needs.
Then there are the side effects from the drugs they give you to prevent the chemo side effects. I kid you not! Each round I had to take steroids to make sure my organs kept working and to combat nausea. These prevented me from sleeping and gave me severe 'roid rage', turning me into a monster on day 4 or 5 of every cycle! The GCSF injections which Tanai administered daily after chemo were meant to encourage my bone marrow to produce white blood cells, thus preventing me from becoming neutropenic. Well these had the delightful knock-on effect of making all my bones ache like hell. A good dose of Epsom salts in the bath eased the pain.
There are more, but these are the 'highlights'. And I suspect that each one alone would be manageable. Many of them are not in themselves debilitating. But combined all together, when you're attempting to still function in society, they have been extremely challenging. I hope I've managed to demystify some of this experience without grossing you out too much.
On the plus side, the chemo has been busy NUKING THE CANCER, yeah. Let's face it that's the primary plus factor. Also most (but sadly not all) of the side effects are temporary. My hair will grow back (perhaps curly, who knows?), the fatigue will ease, I'll lose the chemo weight. But now I will continue to take Herceptin for a year (in injections every three weeks) and Tamoxifen for 10 years (a little tablet each morning), which bring their own side effects. There is also the likelihood that my treatment will bring on early menopause, eliciting a whole heap of other wonderful side effects. What treats I have in store!
There are other positives to this experience, though. There are so many organisations out there geared up to help. For example, Macmillan sent me a small plastic card for my wallet which requests that the person I show it to allows me to use their toilet in an emergency because of my cancer treatment. Useful when out and about! And Transport For London sent me a badge which passive-aggressively asks people to give up their seat for me.
And here are some of the things I've learned while going through chemo:
1) I can walk to my local city-centre Waitrose in tracksuit pants, no undies, flip flops, a baggy t-shirt and a headscarf and shop amongst the 'suits' at 5pm and not lose a shred of dignity.
2) It's actually possible to have both constipation and diarrhoea at the same time. It's like some kind of hideous pooping miracle!
3) Tanai loves me even when I am bald, have tonnes of coldsores, chronic constipation and I'm cranky from the steroids. The only way is up!
4) If I get to the end of the day and the only thing I've achieved is to stay alive, that's not a day wasted. Yes, I've definitely learned the art of slowing down and putting less pressure on myself. Long may it last.
I have to give a huge shout-out to those wonderful people in my life who have helped me get through this tough first phase of treatment. To the amazing friends who have sent or given me thoughtful cards and gifts after researching chemo side effects: nail oil, hand cream, headscarves, ginger sweets and tea, the biggest bucket of Epsom salts I've ever seen, a chilly towel all the way from Australia, homemade cheesy bikkies, gorgeous earrings to help me rock the hairless look, and so much more. To everyone who has popped over to our little flat to visit, some driving almost 6 hours for the privilege, others coming all the way from Australia, many bringing food and lolz. To everyone who has texted me jokes, messaged me support, reminded me they're thinking of me. These things have meant a great deal when you feel as isolated as I have felt at times. To my patient, supportive, caring colleagues, who put up with my regular TMI, have sanitised the heck out of the office, and who go and work in another part of the building when they've got a slightly sore throat. Our daily interactions at work have most definitely kept me sane through this. To the four incredible people who accompanied me to rounds of chemo and gave Tanai a break: Martin, Dom, Caroline and Siobhan. That really was above and beyond and I will be forever grateful. To mum for batch cooking and filling my freezer with delicious food, and dad for sending Tanai presents and reminding him he's awesome. To my uncles Paul and Paddy and their families, for providing Tanai and I with weekend respite before and during chemo. Getting away from the eye of the chemo storm was hugely important for our mental wellbeing, so thank you. I won't go on, partly because there is much more treatment to come, and I'm sure I'll be reaching out for further help and support, or grateful when it's offered unasked.
There are more, but these are the 'highlights'. And I suspect that each one alone would be manageable. Many of them are not in themselves debilitating. But combined all together, when you're attempting to still function in society, they have been extremely challenging. I hope I've managed to demystify some of this experience without grossing you out too much.
On the plus side, the chemo has been busy NUKING THE CANCER, yeah. Let's face it that's the primary plus factor. Also most (but sadly not all) of the side effects are temporary. My hair will grow back (perhaps curly, who knows?), the fatigue will ease, I'll lose the chemo weight. But now I will continue to take Herceptin for a year (in injections every three weeks) and Tamoxifen for 10 years (a little tablet each morning), which bring their own side effects. There is also the likelihood that my treatment will bring on early menopause, eliciting a whole heap of other wonderful side effects. What treats I have in store!
There are other positives to this experience, though. There are so many organisations out there geared up to help. For example, Macmillan sent me a small plastic card for my wallet which requests that the person I show it to allows me to use their toilet in an emergency because of my cancer treatment. Useful when out and about! And Transport For London sent me a badge which passive-aggressively asks people to give up their seat for me.
And here are some of the things I've learned while going through chemo:
1) I can walk to my local city-centre Waitrose in tracksuit pants, no undies, flip flops, a baggy t-shirt and a headscarf and shop amongst the 'suits' at 5pm and not lose a shred of dignity.
2) It's actually possible to have both constipation and diarrhoea at the same time. It's like some kind of hideous pooping miracle!
3) Tanai loves me even when I am bald, have tonnes of coldsores, chronic constipation and I'm cranky from the steroids. The only way is up!
4) If I get to the end of the day and the only thing I've achieved is to stay alive, that's not a day wasted. Yes, I've definitely learned the art of slowing down and putting less pressure on myself. Long may it last.
I have to give a huge shout-out to those wonderful people in my life who have helped me get through this tough first phase of treatment. To the amazing friends who have sent or given me thoughtful cards and gifts after researching chemo side effects: nail oil, hand cream, headscarves, ginger sweets and tea, the biggest bucket of Epsom salts I've ever seen, a chilly towel all the way from Australia, homemade cheesy bikkies, gorgeous earrings to help me rock the hairless look, and so much more. To everyone who has popped over to our little flat to visit, some driving almost 6 hours for the privilege, others coming all the way from Australia, many bringing food and lolz. To everyone who has texted me jokes, messaged me support, reminded me they're thinking of me. These things have meant a great deal when you feel as isolated as I have felt at times. To my patient, supportive, caring colleagues, who put up with my regular TMI, have sanitised the heck out of the office, and who go and work in another part of the building when they've got a slightly sore throat. Our daily interactions at work have most definitely kept me sane through this. To the four incredible people who accompanied me to rounds of chemo and gave Tanai a break: Martin, Dom, Caroline and Siobhan. That really was above and beyond and I will be forever grateful. To mum for batch cooking and filling my freezer with delicious food, and dad for sending Tanai presents and reminding him he's awesome. To my uncles Paul and Paddy and their families, for providing Tanai and I with weekend respite before and during chemo. Getting away from the eye of the chemo storm was hugely important for our mental wellbeing, so thank you. I won't go on, partly because there is much more treatment to come, and I'm sure I'll be reaching out for further help and support, or grateful when it's offered unasked.
I've already had a couple of 'helpful' naysayers question my decision to proceed with this treatment, especially as I'm known for my holistic approach to health and my love of natural supplements and therapies. Aside from the fact that it's 100% my own decision how I proceed with tackling cancer, there's also the not so small matter of science. Eating kale does not get rid of cancer. Chemo does. End of.
If you've made it to the end of this post, well done! It was epic, I know, but the last six months have also been epic, and, like childbirth, I suspect that if I don't write about the experience, I'll forget the horror of it all. Onwards and upwards to the next stage of kicking cancer's arse!
If you've made it to the end of this post, well done! It was epic, I know, but the last six months have also been epic, and, like childbirth, I suspect that if I don't write about the experience, I'll forget the horror of it all. Onwards and upwards to the next stage of kicking cancer's arse!
Wednesday, 5 April 2017
Hair today...
Today I had an experience I wasn't expecting. It has to do with my hair. Now, I have an interesting relationship with my hair. Throughout my life, whenever I felt a bit bored or wanted to change things, I'd dye my hair. It's been red, pink, mahogany, even blue, and I'm naturally a kind of muddy blonde. I've worn it long, bobbed, with a fringe (bangs for the Americans among you), centre parting, side parting, cropped: basically all of the styles! When I went travelling in 2014 I'd dyed it brown, but of course by October that year I was bored and so my mum and I bought some strong peroxide off a dodgy hairdresser in Corfu and bleached out the brown (it's a minor miracle I still have a scalp!). When I moved to London I had naff bleached hair and needed to sort it, to look respectable for work and feel good about myself. It's surprising how much one's hair contributes to one's image, and self-worth. So I found an amazing hairdresser at a salon in Soho, called Veronika, and we've been working on the 'project' of my hair together ever since.
Over the last couple of years, I've seen Veronika fairly regularly, and she's been putting low-lights and highlights in my hair until all the bleach grows out, and it's now almost all my natural colour, with a few highlights. It feels much healthier and I really love it.
Today I went to get my fringe trimmed (which I tend to do between haircuts) and when she was done, I held Veronika's hands in mine and said, 'You probably won't be seeing me for a while, as I won't have any hair for you to cut', and then I unexpectedly burst into tears. I felt so silly, crying in the hairdressers, and poor Veronika was totally shocked. But you see, when you visit your hairdresser every couple of months for a few years, you develop a relationship with them. Veronika and I chat away for a few hours when I am there. I know lots about her and her partner, their travels, her family. She knows a lot about me. She even knew I was getting married before my mum did! (I eloped last year, and when I went to her for my pre-wedding hair cut I couldn't help but spill the beans: she was so excited for me!). And now that we've just got to a stage where I'm really happy with my hair, I'm probably going to lose it all and have to start again. And I'll miss visiting her, and catching up. Anyway, I wiped my eyes, scribbled out my blog link to her and said goodbye. Hopefully, after chemo, when I have a little crop of hair (maybe around Christmas?) I can go and visit her again, and we can start our new hair 'project' together.
I think it made me realise that some things are going to upset me along this journey, and they might not be the things I expect. Here I am, being all flippant about losing my hair, buying wigs, wearing scarves, but really I think it will be difficult to maintain a sense of my identity without my hair. As much as I'd like to think I'm not 'shallow' enough for my hair to be that important to me, it actually is. Perhaps I should get a stock of headscarves at the ready before the inevitable happens.
Anyway, in other news, I've finally been able to share my diagnosis with my colleagues, which is a huge relief. I hated keeping it quiet for so long, but my results kept getting postponed and I really wanted to have some information before spreading the word wider. First I told my team, then my adjacent team, and then the Head of HR sent round an all-staff email. I suspect that was kind of weird for some people but it's so hard to tell my news to people over and over again, and I really didn't want the news to 'spread' like gossip on the work grapevine. My team were amazing and I've already had some really lovely messages of support, some massive hugs (and I'm not usually a huggy person at work!) and offers of help, which is really giving me strength. It is, however, a little strange trying to maintain a sense of normalcy -- I even interviewed a couple of people for jobs yesterday, went for lunch with colleagues, had a laugh. I mean, that's kind of what I need from work right now, to carry on and have a laugh. It's what will keep me sane through all the treatment, I'm sure. But I need to be ready when someone comes up to me randomly, in the kitchen, and says 'Are you okay?'. I just don't have a ready reply yet!
Pink hair!
Hair hat
Brunette
Long and yellow (and the real throne!)
Red bob
Messy crop
Long red (idiot teen)
Long bob, pretty much where we are now.
Over the last couple of years, I've seen Veronika fairly regularly, and she's been putting low-lights and highlights in my hair until all the bleach grows out, and it's now almost all my natural colour, with a few highlights. It feels much healthier and I really love it.
Today I went to get my fringe trimmed (which I tend to do between haircuts) and when she was done, I held Veronika's hands in mine and said, 'You probably won't be seeing me for a while, as I won't have any hair for you to cut', and then I unexpectedly burst into tears. I felt so silly, crying in the hairdressers, and poor Veronika was totally shocked. But you see, when you visit your hairdresser every couple of months for a few years, you develop a relationship with them. Veronika and I chat away for a few hours when I am there. I know lots about her and her partner, their travels, her family. She knows a lot about me. She even knew I was getting married before my mum did! (I eloped last year, and when I went to her for my pre-wedding hair cut I couldn't help but spill the beans: she was so excited for me!). And now that we've just got to a stage where I'm really happy with my hair, I'm probably going to lose it all and have to start again. And I'll miss visiting her, and catching up. Anyway, I wiped my eyes, scribbled out my blog link to her and said goodbye. Hopefully, after chemo, when I have a little crop of hair (maybe around Christmas?) I can go and visit her again, and we can start our new hair 'project' together.
I think it made me realise that some things are going to upset me along this journey, and they might not be the things I expect. Here I am, being all flippant about losing my hair, buying wigs, wearing scarves, but really I think it will be difficult to maintain a sense of my identity without my hair. As much as I'd like to think I'm not 'shallow' enough for my hair to be that important to me, it actually is. Perhaps I should get a stock of headscarves at the ready before the inevitable happens.
Anyway, in other news, I've finally been able to share my diagnosis with my colleagues, which is a huge relief. I hated keeping it quiet for so long, but my results kept getting postponed and I really wanted to have some information before spreading the word wider. First I told my team, then my adjacent team, and then the Head of HR sent round an all-staff email. I suspect that was kind of weird for some people but it's so hard to tell my news to people over and over again, and I really didn't want the news to 'spread' like gossip on the work grapevine. My team were amazing and I've already had some really lovely messages of support, some massive hugs (and I'm not usually a huggy person at work!) and offers of help, which is really giving me strength. It is, however, a little strange trying to maintain a sense of normalcy -- I even interviewed a couple of people for jobs yesterday, went for lunch with colleagues, had a laugh. I mean, that's kind of what I need from work right now, to carry on and have a laugh. It's what will keep me sane through all the treatment, I'm sure. But I need to be ready when someone comes up to me randomly, in the kitchen, and says 'Are you okay?'. I just don't have a ready reply yet!
Friday, 17 March 2017
New considerations
Last night we had a huge fundraising event at work, our biannual gala which raises a significant amount of the budget we need to do our charitable work. It's one of those events where everyone spends months working their arses off in the lead-up, and then in one night it's all over! It's a glittery, starry affair, featuring entertainment and a fancy dinner, and the fundraising elements include a live auction, a silent auction and a raffle.
It was only when I was trying to decide on my outfit that I realised that I ran the risk of having nothing to wear. The dressings from my most recent biopsies extended out into my cleavage and quite high on my chest, and almost all of my 'dressy' dresses are V-neck or at least a little bit cleavage-revealing. I suppose I've always opted for flaunting my assets (ie dresses that accentuate my lovely boobs and small waist) and hiding my bum/thighs (I often have a very 50s style). In fact, I found only 2 frocks which had a high enough neckline to cover the dressings and not cling to, and therefore reveal, the pressure bandages! Hmmmm, I hope a complete wardrobe change is not required in the future. So I popped one on, slapped on a bit of make-up and pepped myself up for the evening.
I had actually toyed with the notion of bowing out and not working the event, but I'm really glad I persuaded myself to go. It was a fascinating evening and so intriguing to see a live auction in action! Part of the reason I wavered was because my manager took me off the official list of helpers, so I didn't have a specific task for the evening. I'm sure she was doing this to protect me, to make me feel like I wasn't pressured into coming if I didn't want to, and to prepare me for the inevitability of the future, where I will probably have to duck out of work events and projects, but it actually ended up making me quite upset. I felt as though I was being pushed out before I even have my prognosis, as though she is being practical and taking me off projects already, knowing that I will probably be out of action work-wise in just a few weeks, or because she now sees me as unreliable. I take so much pride in my work, and I'm so dedicated to my job and my team, I took this quite badly, feeling useless and unappreciated. I know this is my own issue, and I'm extremely grateful to my workplace for being so flexible and understanding about my diagnosis, but I couldn't help my emotional response.
The other new feelings I felt during the evening were about the fact that a small handful of people at work now know about my diagnosis, even though I've not made it completely public. So a couple of them came up to me during the event and discreetly said lovely things like 'I heard your news, I'm so sorry'. I wasn't prepared for how much this would hit me: I felt a prickling behind my eyes, the shock of hearing the news anew. I know they mean well, and again, I'm so grateful for their support and positive wishes, but it's a new feeling for me to be on the receiving end of this sympathy; this pity. I was then very conscious for the rest of the evening of the differentiation between those colleagues who know and those who don't. I felt self-conscious when smiling or laughing with colleagues or guests, and being observed by people who knew my news. And the worst of it was, feeling terrible for the potential negative impact my presence had on those who knew. I started to think that perhaps I had been taken off the list not for my own sake, but for the sake of others. Those who don't wish to be reminded of my situation. Those who don't want a dampener put on a celebratory, fun evening.
I'm sure this isn't the case, but I'm intrigued by these new feelings, these new considerations, and I'm committed to documenting this journey with honesty, so there it is. Let's see how these feelings progress as my news becomes more widely known, and if I develop better coping mechanisms as I repeatedly experience the response of others. I know I somehow have to try to find a way of prioritising self-care over protecting the feelings of others. I think this is going to be quite a challenge.
In the end, I snuck off shortly after midnight, when the evening was winding down and the staff were starting to feel relieved of their duties. I know that the night kicked on until quite late, but I just wasn't feeling it. In a way I wish I'd summoned up the energy to celebrate and dance with my colleagues, but these complex new thoughts are somewhat getting in the way of unbridled enjoyment.
It was only when I was trying to decide on my outfit that I realised that I ran the risk of having nothing to wear. The dressings from my most recent biopsies extended out into my cleavage and quite high on my chest, and almost all of my 'dressy' dresses are V-neck or at least a little bit cleavage-revealing. I suppose I've always opted for flaunting my assets (ie dresses that accentuate my lovely boobs and small waist) and hiding my bum/thighs (I often have a very 50s style). In fact, I found only 2 frocks which had a high enough neckline to cover the dressings and not cling to, and therefore reveal, the pressure bandages! Hmmmm, I hope a complete wardrobe change is not required in the future. So I popped one on, slapped on a bit of make-up and pepped myself up for the evening.
Pre-event toilet selfie!
I had actually toyed with the notion of bowing out and not working the event, but I'm really glad I persuaded myself to go. It was a fascinating evening and so intriguing to see a live auction in action! Part of the reason I wavered was because my manager took me off the official list of helpers, so I didn't have a specific task for the evening. I'm sure she was doing this to protect me, to make me feel like I wasn't pressured into coming if I didn't want to, and to prepare me for the inevitability of the future, where I will probably have to duck out of work events and projects, but it actually ended up making me quite upset. I felt as though I was being pushed out before I even have my prognosis, as though she is being practical and taking me off projects already, knowing that I will probably be out of action work-wise in just a few weeks, or because she now sees me as unreliable. I take so much pride in my work, and I'm so dedicated to my job and my team, I took this quite badly, feeling useless and unappreciated. I know this is my own issue, and I'm extremely grateful to my workplace for being so flexible and understanding about my diagnosis, but I couldn't help my emotional response.
The other new feelings I felt during the evening were about the fact that a small handful of people at work now know about my diagnosis, even though I've not made it completely public. So a couple of them came up to me during the event and discreetly said lovely things like 'I heard your news, I'm so sorry'. I wasn't prepared for how much this would hit me: I felt a prickling behind my eyes, the shock of hearing the news anew. I know they mean well, and again, I'm so grateful for their support and positive wishes, but it's a new feeling for me to be on the receiving end of this sympathy; this pity. I was then very conscious for the rest of the evening of the differentiation between those colleagues who know and those who don't. I felt self-conscious when smiling or laughing with colleagues or guests, and being observed by people who knew my news. And the worst of it was, feeling terrible for the potential negative impact my presence had on those who knew. I started to think that perhaps I had been taken off the list not for my own sake, but for the sake of others. Those who don't wish to be reminded of my situation. Those who don't want a dampener put on a celebratory, fun evening.
I'm sure this isn't the case, but I'm intrigued by these new feelings, these new considerations, and I'm committed to documenting this journey with honesty, so there it is. Let's see how these feelings progress as my news becomes more widely known, and if I develop better coping mechanisms as I repeatedly experience the response of others. I know I somehow have to try to find a way of prioritising self-care over protecting the feelings of others. I think this is going to be quite a challenge.
In the end, I snuck off shortly after midnight, when the evening was winding down and the staff were starting to feel relieved of their duties. I know that the night kicked on until quite late, but I just wasn't feeling it. In a way I wish I'd summoned up the energy to celebrate and dance with my colleagues, but these complex new thoughts are somewhat getting in the way of unbridled enjoyment.
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