Today marks six years since I was diagnosed with breast cancer and I’m not quite sure how to sum up everything that’s happened in the last 24 hours, let alone the last year or six years. So here’s a list, in no particular order, of random thoughts and people who have inspired me. Continue reading
I forgot the one-year anniversary of my last chemo. Yep, it passed by completely unnoticed on November 27 and it took a whole week before I realised. That I could forget my own “Chemo-versary” is some serious progress.
The funny thing is I’ve been forgetting a lot of things recently and it could be down to chemo killing my brain cells. Over the last year or so, I’ve heard a lot of people talk about “Chemo brain,” a post-treatment loss of memory, concentration and general brain-scattiness.
I’ve always put my own memory loss down to age and other factors, but lately I’ve been forgetting more than usual. So whether it’s technology overload, the onset of my 30s or a side effect of the treatment, I don’t know. But it would be pretty ironic if chemo brain made me forget my own chemo, wouldn’t it?
The good news is, while I may be a few brain cells shorter than when I began, I’ve grown a lot of hair in the mean time.
A few weeks ago I had my third hair-cut since chemo (the second one went unmentioned on this blog because it was awful and made me hate my hair for an entire two months). As you can see from this pic, the lovely Irish hairdresser did a great job.
Despite its growth at the front though, it’s still looking pretty thin and baldy on the top. My eyebrows are also still pretty much non-existent underneath the make-up and I don’t know if they’ll ever grow back. Having spent a fortune on eyebrow-growth products with no results whatsoever, I’ve now decided just to let nature take its course.
If I was in any way feeling sorry for myself about my winter flu and thinning eyebrows, last week saw me put firmly back in my place at a thank you party organised by my favourite charity, CoppaFeel! Every time I see or hear from the amazing founders, Kris and Maren, I am reminded of how incredibly lucky I am to have come out of cancer virtually unscathed, with my life and health in tact.
The rather glamorous party was a celebration of the first four amazing years of the charity set up after Kris’s diagnosis in 2009 that has since helped so many young people and spread a very important message about knowing our own bodies.
There were speeches from Kris and Maren as well as the lovely Dermot O’Leary and a most inspiring young lady called Sarah Outen, who won an MBE after sailing the Indian Ocean all by herself. There was also a performance from Newton Faulkner, another proud boob champion who was thoroughly delightful in the flesh, and I got chance to catch up with loads of inspiring ladies my own age who have all had breast cancer too.
Though I’ve been feeling thoroughly under the weather and exhausted of late, I have to say this event cheered me right up and put everything very much into perspective.
In memory of my “chemo-versary,” I’ll be posting a blog for Vita magazine in the next few days with a few tips for people going through chemotherapy, so stay tuned for that. Otherwise, I suspect this will be my last blog of 2013 so I’ll leave you with a pic of me and my festive attire and wish you all a very merry Christmas.
Another week of radiotherapy went by and I still haven’t really started feeling the effects. At some point soon, one of my boobs should go all red and sunburnt-looking while the other one remains its usual pinky self, but at the moment they’re both looking identical (except for the shark-bite scar from my surgery on the left one). I’m not feeling any pain or irritation and I don’t think the fatigue has really set in yet either. I’m still tired from the chemo and I can’t manage a lot of physical activity, but I haven’t got to the point where I need to sleep in the afternoons yet.
It’s almost two months since the final chemo and my hair still isn’t making much progress. As you can see in the photo above, there’s just a bit of fluff growing on the sides (and back) of my head, but it’s still really bald on top. I’m thinking I’ll have to start some sort of new trend for shaving a skunk-like panel into the middle of one’s head and just keeping the hair at the sides – anyone fancy joining me in that?!
Seriously though, there is no sign of any new eyebrows or eyelashes growing and it’s starting to get me down a bit. I don’t think I ever realised when I first lost my hair that it would be almost a year before I had enough hair again to grow a pixie, but that’s exactly what it’s going to be. So it’s a good job I invested in some quality wigs, as they are finally getting worn on a regular basis with me going to work every day. My target is to go to work wigless in a month’s time, though.
I’ve been conducting a silent and unofficial poll of my wigs at work this week and it seems the people’s firm favourite is ‘Joana‘ (pictured right) – funnily enough, the wig I’ve worn the least in all my five months of baldheadedness. So I got glammed up with Joana for my first proper big night out since the pre-cancer days last night and I actually almost felt I got a little bit of my confidence back.
Towards the final strait of cancer treatment, people tend to say “Oh, you’re almost finished now!” “You’re on the final strait!” “You’re back to normal now” etc etc. But it’s actually a great big myth. This stage of treatment (I won’t call it the ‘final’ stage, because my treatment will essentially go on for the rest of my life) has probably been the hardest for me. Even though I found chemotherapy infinitely more physically demanding and challenging than radiotherapy, I am finding this stage difficult for other reasons. My whole cancer treatment has been going on for so long now, it’s hard not to feel tired of it, and it’s particularly tough to see light at the end of the tunnel. The effect on my appearance is also at its greatest, but I’m no longer able to just wallow all day in the comfort of my own home and just be a cancer patient. Instead, I’m effectively living a normal life but I don’t look or feel normal, so it’s tough. Still, I know time will fly.
One of the silver linings of my week was being able to walk along the beach in Dublin to get to the hospital. It’s about a 50-minute walk from my work to St. Vincent’s and the views are beautiful, especially when the sun is setting, around 4:30pm. (Long winter…) I’m glad I took pictures early in the week when I did, because I’ve had to take taxis ever since Tuesday, when it started poured with torrential, sideways rain, hail and sleet and blew gailforce winds that nearly knocked me into the canal. Not exactly strolling weather.
Finally, I took the nutritionist‘s advice and bought an expensive juicer from UKjuicers.com. As you can see, it’s an intriguing contraption but I’ve used up all the vegetables and fruit in my flat and made the most amazing juices (apple, carrot and ginger being my current fave) in the past few days, so I think I’ll get plenty of use out of it. I’ve done pretty well increasing my fruit-and-veg intake in 2013 but my dairy-free diet is failing miserably at the moment. I haven’t given up hope, but somehow rice milk in my tea just isn’t cutting it. Still, one step at a time and I’ll get there in the end..
I thought I’d start posting my Huffington Post blogs on here as well, so in case you haven’t seen it, here’s the latest one:
Today I had my 15 minutes of fame in the Huddersfield Examiner, the follow-up to my 2004 hotpant-clad debut, back before the online archives even began.
I’m pleased with Hilarie Stelfox’s article, which focuses on how I’ve used this blog and my Huffington Post blog to help me through the horrible cancer journey. The only minor issue, as one of you pointed out, is the rather unfortunate advert for some funeral services in the online version of the article (which they’ve said they’ll remove) but we’ll let it pass, in the name of good humour!
Click here if you want to read the article.
Since I know only about 2% of the people who actually read this blog are in the Huddersfield area, here’s a couple of pictures of the hard-copy version, which my Dad just went out and bought:
(I’m not overly happy with the bald pic, which I think makes me look a bit chubby-faced. But then I realised when I got weighed at the hospital yesterday and today that I have actually put on 5kg (ie almost 10% of my original weight!) since before chemo, so maybe I am just a little chubby-faced compared to what I was before!)
And the unfortunate funeral ad:
Tomorrow I will take my first dose of Tamoxifen – the drug that suppresses oestrogen production to keep the cancer from coming back. I have to take Tamoxifen every day for the next five years, so that’s 1,825 tablets, and if all goes to plan, I’ll take my last one around the 18th December 2017, when I’m 35 years old. A lot can happen in five years! That said, a recent article suggested that doctors could change the recommendation to 10 years of Tamoxifen to increase survival rates, so if that happens, I’ll be taking it until 2022, year of the long-awaited Qatar World Cup! (Perhaps I’ll get tickets and go along to celebrate).
The most common side effects of Tamoxifen are:
– Weight gain
– Increased risk of blood clots
– Hot flushes
So if I’m chubby, rosy-cheeked and wearing rather tight socks next time you see me, you’ll know why!
As I said, Tamoxifen is taken to reduce oestrogen in patients with oestrogen-sensitive breast cancer, like myself. It’s a funny thing, oestrogen. Right before I was diagnosed with breast cancer, I had been taking an oestrogen-only contraceptive pill. I am told the pill isn’t likely to have caused my breast cancer – it’s more likely to be genetic – but if I had known about the risks associated with oestrogen, coupled with my grandmother’s breast cancer, I may have thought twice about an oestrogen-only pill, not to mention the pill in general.
Among the more devastating things I’ve been told by oncologists since my diagnosis is that if I’d had children already, I probably wouldn’t have got breast cancer. This is because getting pregnant reduces your oestrogen production, and the more pregnancies, the less oestrogen. So if I’d had kids in my early 20s instead of doing all that travelling and working, perhaps I wouldn’t be in this situation. And now there’s a chance I won’t be able to have kids at all. Kind of ironic…! Still, I’m not complaining – I’ve had an incredible time since finishing school and if I’d had kids in my early 20s, I probably wouldn’t have seen or done as much as I have. So, no regrets…
Oh dear. I’ve had a very mild, tickly cough for about a month and yesterday it escalated into a full-blown, nasty choking, phlegmy cough. During the night I developed a painful sore throat and woke up this morning having largely lost my voice, so I am now on the antibiotics. So much for having a super-sonic immune system with 39.7-level white blood cells! Pah!
So, the nutritional therapist. I had a 1 1/2-hour consultation on Friday with Liz Butler, founder of Body Soul Nutrition, with a view to getting some advice on what I should be doing to keep my cancer away, and finding out whether any of my eating or lifestyle habits could have developed a better environment for the cancer to grow in the first place. One of the things she said was that many people have their cancer treatment and then go back to living their lives exactly as they did before – continuing to eat the same things, maintaining the same stress levels and doing the same amount of exercise, thus preserving the same body conditions in which the cancer initially thrived. It’s vital, according to Liz, to make drastic changes, both emotionally and nutritionally, to keep the cancer cells from growing again.
Her main recommendations were that I cut out dairy altogether and avoid sugar as much as possible. She also gave me some nutritional plans and talked to me about how each meal should be ideally composed, i.e. 50% vegetables and fruit on each plate, 20% starchy carbs (but only whole grains – no white rice, white pasta, white bread etc), 20% protein (eggs are allowed – phew!) and 10% fats (including nuts, pulses and butter, which is the only dairy allowed).
All of the above seems largely doable, apart from the giving up of dairy products and sugar, which is difficult for me to envision for the rest of my life. Two weeks, as I proved before, is easy peasy, but a life with no pizza (cheese), tea and coffee (milk), cheese and biscuits, cake, chocolate and many other tasty things is hard for me to get my head around. On the positive side, she did say I’m allowed red meat (once or twice a week, max), as long as it’s the best type of meat I can get my hands on – i.e. organic, free range etc (because the lower quality the meat, poultry or fish, the more likely it is to have been injected with antibiotics, hormones, etc).
One thing to stress is that the nutritional therapist didn’t say I have to give up all these things entirely – she said it’s fine to have a little of what I fancy, when I fancy, i.e. a couple of squares of dark chocolate every couple of days or a slice of cake or a dessert once a week, which is also fine. But I will struggle more with dairy because I eat a lot of it.
I decided for my last chemo I would be good to myself and let myself eat what I wanted, because often you feel so miserable and your tastes change so much, I didn’t want to punish myself like last time. So I’ve been eating something sweet most days, though not going overboard. And Christmas is coming up, so I’m not going to punish myself then either. But it’s important during radiotherapy to eat well to minimise the side effects, so I will definitely start being a little more strict in January.
I plan to take Liz’s advice to the extent that I can manage, cutting out dairy and sugar as much as possible but essentially allowing myself what I want in moderation. I am still very much aware that the oncologists don’t recommend any specific dietary changes and they certainly don’t recommend giving up sugar and dairy, and there is no proof or concrete evidence that doing so would guarantee my cancer never recurs, but at the same time changing what I eat to some extent will at least allow me to have a little more control over the situation. Nevertheless, I thought I might as well start as I mean to go on…
I started off well. Saturday morning, I had my first ever black coffee, and I quite enjoyed it. (I forgot to mention she told me to give up caffeine, but I may have to do things gradually!) Then I had a ginger steeper (fresh ginger in boiled water) at Leon. For lunch at Giraffe, I ordered a fresh fruit smoothie and a brown-rice sushi salad consisting of spinach, smoked salmon, mango, avocado and various seeds. But because I didn’t quite have the 50% veg/20% carbs ratio quite right, I ordered a separate side helping of sauteed veg (green beans, peppers and the likes – delish). Which brings me to Nutritional Problem #1: eating better is way more expensive. The better quality and the more organic the meat or the veg, the more the price increases. And the more veg portions you order to try and get the right balance, the more you end up paying. And Nutritional Problem #2: The better you want to nourish yourself, the more you have to plan what you eat, where you eat, when you eat, etc.
And then it all went down hill. As mentioned in Tuesday’s post, Saturday night I went to Bubbledogs and ate two hotdogs. I am not convinced the pork sausage was the most organic meat in the land (largely because I do not know its origin) and I can take an educated guess that barbecue sauce and ketchup both have a fair amount of added sugar. That said, at least I didn’t have a pudding, and the jalapeños on the Mexican dog would have been good for me. But I did have a glass of champagne.
Sunday, it went further down hill, with a bacon sandwich on white, a cheese toastie and sausage, chips and veg for dinner. And Monday, a decent lunch of Eggs Florentine (bit of spinach, decent amount of protein) and a handful of Niki’s fries, then fish and chips on the train home (free first-class food, I could hardly refuse, could I?) I suspect the quality of the fish on East Coast Trains may not be the best in the world, which brings me to Nutritional Problem #3: It’s particularly hard to change your nutritional habits when you’re away from home. But, like I said, I’m not being strict on myself at the moment as a) I’m still under the wicked spell of the last chemo and within the three-week cycle, b) I’m sick and c) it’s the season to be jolly, tra la la la la la la la la.
Thank you all, though, for adhering to my request not to send me any more junk food. Alice very kindly oven-roasted me some assorted nuts in fennel and honey and they are amazing – I’ve been munching my way through them as only a gannet would. I since found out that honey is on the no-no list of sugary foods (Sorry, Mr Curado, I misinformed you), but I’m happily munching through them anyway (see points a, b and c). Thanks also to Beth for the lovely tin of personalised soup, as pictured at the top of the page (don’t ask why “Bobr”).
So, that’s (the very much abridged version of) what the nutritional therapist said. I still have a lot of reading and researching to do, and I confess I am slightly skeptical that following all this advice will keep the cancer away for good, because I have always eaten so healthily and it’s most likely my cancer was caused by a gene fault (just not the one I tested negative for). However, I have to do something to take this into my own hands, and improving my diet seems to be a good place to start (she says, while slurping through a cream-heavy tin of chicken soup…)
Yes, I really did wear my birthday bunny onesie to the hospital yesterday. It had to be done, given Monday’s good news re: the BRCA gene result and then the fact that it was my final chemo session. And guess what? Not a single person commented! A few people looked me up and down with amused faces, but not even the oncologist batted an eyelid when I turned around to leave his office, revealing my white bunny tail! (Pippa Middleton, eat your heart out). Well, these people have clearly seen it all.
(That’s mother in the background beavering away relentlessly at her work – she never ceases.)
The day in hospital took a little longer than usual, but the chemo itself flew by. Nurse Alison was one of the best I’ve had yet and she managed to get the needle and cannula into my hand with the minimum of fuss, effort and pain, much to my relief. The ice torture wasn’t even as bad this time – I swear the gloves were warmer, or maybe I’m just getting used to it. There was a period of about 15 minutes with the second pair of fresh ice gloves when my hand was completely numb and I thought it was going to drop off, but the fact that I knew it was my final chemo made it all easier to bear.
The good news is the oncologist agreed with the geneticist that I don’t need to have the mastectomy operation. The combination of surgery, chemotherapy, radiotherapy and five years of Tamoxifen on my left breast is the equivalent of having a mastectomy, he said. Of course, there is much more of a risk of getting breast cancer on my right-hand side at some point, but if this happened, I could have the same treatment of surgery, chemo and radio again (God forbid this never, ever happens). And if I get a recurrence on my left side, I’d have to have a mastectomy then. He said the double mastectomy and reconstruction at this stage would be such a huge and fairly risky operation that my situation doesn’t merit taking the risk, so I shall now cast all doubts from my mind and concentrate on getting back to my life – a very, very happy day!
My blood count yesterday, even after two days of steroids to boost it, was still almost too low to have chemo, and the oncologist had decided that my infection and high temperature a couple of weeks ago were the effects of the chemo, so he has given me more steroids to take for the next few days, plus some other drugs to offset the side effects of the steroids, so this is the grand total of what I’m on at the moment:
– The Taxotere chemo itself
– Dexamethasone steroids (I’m in hot-flush heaven right now…)
– Once-a-day injection of Filgrastim for 10 days to boost my bone marrow/immune system
– Lansoprazole to offset steroid side effects
– Senokot to ward off the constipation
– A healthy cocktail of Co-Enzyme Q-10 and multivitamins
– Aspirins in a few days’ time when the pain sets in
– Tamoxifen starting in three weeks for five years!
Uff! That’s definitely the most drugs I’ve ever taken, I’d say!
So, the next steps… well, it’s not over yet. I have to go back to see the oncologist in 3 weeks for a check up. No doubt my blood count will be very low by then as it’s never recovered properly and I won’t be taking the steroids any more, but fingers crossed there’ll be no infections this time. Then I start taking Tamoxifen, the drug to reduce my oestrogen levels for five years, and in 3 weeks I also go to Dublin to meet the radiotherapy team.
Then, fingers crossed, radiotherapy in January and February, then back to see the surgeon in March, back to see the oncologist in June and so on and so forth returning to the hospital for the rest of my life!
I confess I had a bit of a sugar binge last night because I really felt the need for sugar and thought, if you can’t have some Haagen Dazs ice cream, ginger ale and prawn cocktail crisps on your final day of chemo, when can you have some Haagen Dazs ice cream, ginger ale and prawn cocktail crisps?! Plus, the oncologist is absolutely adamant that what I eat has nothing to do with my cancer so if it were left to him, I could just continue as normal. But I’ll give all those nutritionists the benefit of the doubt and continue with my healthy eating from now on…
Finally, thanks to Kimm and Howard, who sent me these gorgeous flowers about 20 minutes after I got my gene test result on Monday. Beautiful!
Now it’s off to rest for a few days… This bunny is DONE with chemo!
After an agonising 8-week wait, I finally got the results of the gene test when I was half-asleep this morning. Amazingly, I tested negative and got the all-clear for the BRCA1 and BRCA2 gene faults. This is great news not only for me but also for my family, as we can just about assume none of us inherited the gene mutation (and perhaps Granny Hetty never had it after all). PHEW! This means several things (I feel a list coming on…):
1) I can keep my original boobies!
2) I won’t have to have a double mastectomy and try to make new boobs out of my back muscle/stomach flab (so I’ll stop eating all the pies now).
3) I will be able to proceed with radiotherapy in Dublin in January, dates pending – watch out Dublin & FB, here I come!
4) I should be able to have baby Priceys some day without having to worry about passing on nasty harmful genes to them.
Hooray! Now that really is a weight off my mind.
There is still a decent chance I could get breast cancer in my untreated breast at some point in my lifetime (30% over the next 60 years, compared to about 5% for a woman who has never had breast cancer), but apparently this is not enough to merit a preventative mastectomy. I may be able to have further tests in 5-6 years to see if I inherited a different condition that caused my breast cancer, and there’s a chance I could look at having a mastectomy then, but for now the decision is that the boobies are staying put! My ovarian cancer risk is also about as low as that of any person, as far as I understand. So, happy news all round.
Fortunately, I had some fabulous girlfriends to stay for the weekend, which took my mind off waiting for the phone to ring with my results. As you can see, we had a great time frolicking in the Yorkshire countryside in our wellies, and later trying on all my wigs. My legs are now sore from all the up-hill walking in wellies, and I’m feeling drugged up from the steroids and ready for a good sleep.
(Here we are pictured hanging from a tree that must’ve fallen in the past few days’ incredibly strong wind and rain!)
(Both photos courtesy of Miss Sophie Austin!)
The No-Sugar Diet
In other news, I just wanted to clarify to you all that I am staying off sugar for good, as I don’t think I made it clear in my previous blogs. The reason for giving up sugar in the first place was that there are very strong links between sugar and cancer, and drastically reducing my refined sugar intake is one of the ways I can try and prevent my cancer from recurring. I am looking forward to meeting the nutritionist in two weeks to find out more, but it seems eating refined sugar in things like chocolate and baked goods can cause my cancer cells to grow and thrive, so the best thing I can do is cut it out as much as possible.
As my weekend visitors know, I may have lapsed slightly with a certain sticky toffee and ginger pudding and some delicious chocolates, brownie and cookies, but I am now back on the no-sugar diet. As with all temptations in life, it’s pretty tough to cut it out 100%, so the plan is just to have tiny amounts of sweet goodies occasionally, but cut them out on the whole. So if you’re stopping through the Shepley area and fancy popping in to help me through my backlog of sweeties, please do stop by!
It’s the final chemo tomorrow! I think I will be practically dancing around with joy in a 10 days’ time when I’m through the worst of it!
HOORAY FOR BOOBIES AROUND THE WORLD! GO CHECK YOURS!