Breast cancer lesson 136: Say goodbye to the fake menopause – and hello to a good night’s sleep

Contrary to what my oncologist thinks (although I fear he was trying to lighten things), no woman needs a fake menopause to prepare themselves for the real thing. You may see it as an end to periods as you know them. In truth, the menopause disrupts so much more than that (sleep being top of the list) and, enduring it more than once is not something ever to be encouraged.

That is, unless you want to try and give your ovaries a chance of coming back to life after chemo!

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Four weeks ago today, I was waiting patiently in the oncology clinic for my very last Zoladex injection (click here for lesson 124 and a quick reminder). Zoladex (also known as Goserelin) is a hormone therapy sometimes offered to pre-menopausal women throughout chemo to send their ovaries to sleep. The idea is that chemo drugs tend not to attack things that aren’t actually doing anything (similar to the cold cap treatment to reduce the chances of hair loss). While its effectiveness is still yet to be proven, it is widely agreed that while taking the drug may not guarantee you retain your fertility after treatment, it certainly doesn’t do any harm (unless you see four months of sleep deprivation as harmful)!

With no Zoladex appointment scheduled, today marks the start of the waiting game. Up until now, I have not expected a period. Now, I live in hope that my body will return itself to normal and not actually send me into the official menopause (if feels strange to be wanting something like a period. I will probably regret saying that if it comes back with a vengeance). The odds, based on my age, are good. The reality? No one knows and no one dares predict. It’s saving me a fortune in sanitary products, but I would really rather just take the hit.

I haven’t written much about my feelings surrounding the prospect of infertility. I have always been a great believer that things are meant to be. I remain thankful that lots of my friends have been able to conceive and I feel lucky to have so many children in my life (if not under our roof). Whatever happens (even with seven embryos in the freezer), I just feel happy to be here. The future can take care of itself. The way I see it, childless and alive is still a good result! And, if children do feature in our future, I have Zoladex to thank for preparing me well for months of sleep deprivation.

Of course, it’s not just the periods I am willing to return. A night without a yo-yoing temperature is something about which I have been dreaming (when I get the rare chance) for a long time. I understand that Tamoxifen – my soon to be best friend for the next 10 years – is likely to cause at least some of the same symptoms (lucky me!), but given I don’t have to start taking this daily delight until radiotherapy is over, I am hoping for at least a little break (PLEASE!!!!!!). I am now pretty effective on about three hours (my usual pattern is to fall asleep straight away and then wriggle around in a few different outfits from 2am onwards) – but I really wish I didn’t need to be. When a lie-in is once again a treat, you will all know about it. The title of this post may seem a little premature, but I am hoping by expressing it publically, my body might just take the hint!

My fingers are well and truly crossed. Let the waiting game begin!

 

Breast cancer lesson 135: Why I won’t be binning my bras just yet!

Breast cancer surgery does present most women with a bust-sized dilemma. Can I – and should I – get back to wearing the bras I lovingly selected for myself before cancer stole my boob? The answer, it seems, like a lot of other cancer-related questions, is that there are no hard and fast rules.  

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Having had DIEP surgery, it seems surgeons, breast nurses and patients alike all agree that you should steer away from under-wired bras for a good six months after the operation. This I have done – in fact I can’t stop wearing my post-surgery bra in bed, which I was allowed to remove at night after six weeks!

What happens after six months, however (a marker I am about to hit), is the subject of much debate. Being a big fan of my underwear drawer, I was delighted to hear from both my plastic surgeon and a fellow survivor that, in their view, the question is not whether or not you should wear under-wired bras, but more whether wearing under-wired bras is actually comfortable. In fact, the best piece of advice I received was from an event speaker who suggested you try on everything in your underwear drawer before deciding to burn the contents (with Suzie the wig in tow, it would make an impressive fire though).

The fact my bras may get a stay of execution makes me very happy for a number of reasons. Firstly, if you’ve actually had the joy of scouring the racks in a department store for something without a wire, you’ll discover it’s not really a joy at all. The selection is limited (think 20 racks of wired to 1 rack of non-wired and you’ll get the picture) and it seems you are suddenly categorised alongside breastfeeding mothers and teenage starter bras, which is not particularly sexy for a lifetime choice. Building up a new collection is not something I fancy doing overnight either, especially when I have a tummy fat-filled new boob, which has a tendency to grow when it feels like it (if you’ve been following the blog you will know that the fat never actually forgets its origins and can grow considerably if you put on weight).

Of course, with the help of Google, I have found a few non-wired bras that make me feel my age (and feminine as well, which is a bonus). M&S, Gap and Fig Leaves have been my shops of choice and I am delighted to have found some that are navy and pink (rather than simply beige, beige, white and more beige). Amoena also has some nice styles, which I may try if the post-surgery bra fashion parade doesn’t go according to plan. My advice is definitely to try out some different non-wired styles in the months following surgery (for morale more than anything else) and avoid the stores (mail order is much more satisfying and you don’t risk dragging yourself round the shops to find the only one you like isn’t available in your size).

If the under-wired option does prove to be a little uncomfortable, I do have a few back-up plans. Firstly, I am attending a meeting with a bra manufacturer one evening in September to discuss wearer trials for some post-surgery bras (that don’t make you feel like you’re either 70 or 12). Secondly, I have signed up to a lingerie evening with Breast Cancer Care in October to get a proper fitting (let’s hope new boobie plays ball) and some tips on choosing right bra for your body shape. They are held across the country and come highly recommended for those looking for a bit of comfort and style! 

I will let you know how I get on when I can extract myself from the comfort of my post-surgery bra. It may take a while, given I have to minimise friction while going through radiotherapy (am just hoping I can run and wear clothes for that period at the moment).

As a quick aside, for those of you worried about whether or not there is a link between the type of bra you wear and breast cancer, please do not despair. There is a great piece by Cancer Research UK (click here to read), which explains that there is no scientific evidence to link the two. It appears that some people believe under wired bras can have a negative effect on the lymphatic system (causing toxins to build up in the breast area). Cancer Research UK explains that your bra would have to be unbearably tight to start to have any impact at all.

The underwear drawer is safe for now – and long may it remain so!

Breast cancer lesson 134: Get ready to graduate. Chemo is one test you will pass

August 8 will forever be known as the day I officially finished chemo.

Unlike most other milestones on this cancer journey, this day comes with no medical-related strings attached. No needles, no toxic cocktail being pumped into my veins, no boob job. Just me at the end of a three-week cycle NOT sitting in a chemo chair. That makes it pretty special.

How did I celebrate this momentous occasion you ask? I went to the hospital of course! This time, however, it was for an arm measurement as part of the Lymphoedema clinical trial and the last of my wonderful aromatherapy treatments courtesy of Dimbleby Cancer Care. I baked some flapjack because I was visiting the Cancer Day Unit for my massage. But, that is where the similarities end. 

As the end of a three-week cycle, you could be forgiven for thinking that I might now be symptom free. Sadly, the cumulative effect of chemo means that bits are still falling off – and may continue to do so for quite some time. It feels a little cruel that at the time you’re recovering, you can actually start to look a little worse. But then, I don’t think chemo likes playing by the rules – hence the fact we all have a different experience going through it.

With a break in the cycles at last, I thought it would be fitting to take stock and look at the aftermath. Basically, what’s left and what’s a little bit wonky. Here’s the damage (so far):

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  • Head: arguably still bald, but now sprouting what I call ‘chicken fluff’. It’s soft like baby hair (another reason why I liken chemo to being reborn). Not sure on the colour yet, but I’m hoping it isn’t grey. These pictures hopefully give you a glimpse of the fluff – although I do appreciate the lighting makes me look a little like an alien! 
  • Eyebrows and eyelashes: clinging on for dear life still, but fading fast I fear. People do say the eyebrows are the last to go and it looks like that may be the case. I do feel lucky though because the combination of lighter hair and glasses does make it hard to tell if they are there or not. I am sad I can’t wear mascara (my one or two lashes would look a little weird if I highlighted them)! 
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  • Other hair: why is it that the leg hair is the first to reappear? As if anyone wants that back! I have heard that if you wax it early on, it may forget to grow back. If you can vouch for this do let me know before I rush off to get them waxed! The arm hair, on the other hand, is now falling off (having thinned throughout). Everything else is still pretty much absent (oh, nose hair, my runny nose misses you). I am watching my big toes carefully as I have heard they can become a bit Frodo-like in the post-chemo days.
  • Nails: Sore nails are really not pleasant. If you tap them on a hard surface (I did this once and now try to avoid at all costs) if feels as if they are coming off. They remain painted in blue and pink, but the last time I reapplied the colour, there was a lot of discolouration and my big toes were black. Thank you nail varnish is all I can say. At least this is something that can be masked.
  • Hands and feet: I have separated this out from nails because the key side effect I have been left to enjoy is peripheral neuropathy. This means I get a tingling in my hands and feet and the numbness/reduced sensation in both is very odd indeed. I can live with it, but I really hope I don’t have to.
  • Weight: A 2kg increase over seven months is a result in my book. Now just got to get rid of the steroid hamster cheeks and lovingly protect my flat-but-bulging-a-bit stomach.
  • Tastebuds: back in the game and currently devouring some homemade bread. Bread has such a subtle flavour, it really isn’t worth eating when the tastebuds disappear. I am certainly making up for it now (although ever mindful of the point before).
  • Mouth: ulcer free and no white tongue. Whoop! 
  • Liver: survived! Thank you liver. I need you.
  • Hot flushes: controlled slightly by the Clonidine (I can increase the dosage, but am not at the moment), but still a pain at night. I do love the sunshine and the summer, but think the autumn weather may help.
  • Skin: silky smooth and slightly tanned (for the first time in about a decade). It does feel as if I have been regenerated. Still on the factor 50 and think I may be for the rest of my days.
  • Fatigue: I am not sure whether this is due to the drugs or the general lack of sleep caused by the Zoladex.
  • Brain: in tact, just. I have been known to put the plates in the fridge (along with the cereal). But, I think I may have done that in the pre-chemo days, so I don’t really have any excuses.
  • Positivity level: still smiling!

Everything else is still in tact (or yet to be investigated)! I certainly won’t be scratching the surface to find out.

Am I happy to have survived four months of toxic drugs without being hopsitalised and spending even one day in bed. Absolutely! Would I go through it again? Not this month – and hopefully never again! I was reading only the other day that scientists are predicting that chemo will be obsolete within 20 years (due to a project looking at the genes responsible for cancer). To think that people may one day be cured without these drugs is a wonderful thought.

When things stop falling off me, I will be uploading my cancer kit list (along with my top tips and reflections on chemo) to help all those facing sessions in the chemo chair. One thing I will say now though is that chemotherapy doesn’t come with a textbook. If it did, we’d all be reading it. There are things we can all do to prepare, but it is far better to wake up each day and meet each challenge head on than worry about the challenges you may never have to face. Easier said than done, but it can be done!

There’s no mortarboard, gown and certificate waiting for this graduate – just the satisfaction of knowing I am out the other side (and I have good skin)!

I got there – and so will you.

Breast cancer lesson 133: Embrace those tattoos! It’s radio planning time

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It’s official. I am a rebel. This morning I woke up a tattooless woman. Now, I have three!

Ok, so when I say tattoos, they are pretty unremarkable. Here’s one, and I must say it looks more like a misplaced biro mark or poppy seed. It certainly won’t be doing the rounds at parties, that’s for sure! But it is permanent and the hospital radiographer used the word ‘tattoos’ so I’m taking it. Surgery took my boob and tummy fat, chemo took the hair I spent 32 years learning how to style (it won’t come back exactly the same I doubt – let’s just hope it’s not grey) and will no doubt scar me in some other way, so I see this as radiotherapy’s way of getting in on the action and making its mark.

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As appointments go, the radiotherapy planning session is fascinating. Down in the windowless lower ground floor of the hospital I sat in a waiting room with just one other (a rare treat) ready for my biro dots. Here’s what happened:

  • It started with a quick pep talk from a radiographer. She talked me through the planning session, checked it was me who signed the consent form and took a photo (just to make sure they blast the right person in future).
  • Next, I was collected once more from the waiting room and ushered into a room with a CT scanner, a bed and a variety of plinths. The team of three (including a student) were really friendly and it was lovely to see them getting on so well. I was also amused by the party mix playing in the background, which was later revealed to be a playlist from someone’s younger days. Certainly livened up proceedings.
  • Once I’d taken my top off (again) and popped on a gown (best to wear a top and skirt or trousers rather than a dress so you don’t have to take everything off), I was asked to sit on the edge of the bed in a specific position. I then had to lift my legs up to rest against a metal plate at the end of the bed, before shuffling my bum to rest against something behind me. Bum in place, I was asked to lie down, clasp my hands together and raise them above my head, placing my arms into two arm rests. Finally, I was wiggled around (they ask you to let yourself go heavy in the bed so they do all the moving) to get my body in the correct position.
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  • Position sorted, the felt tip pen came out. Then started the art class all over my boobs! Here’s one of the marks (that thankfully I do get to wash off tonight). The marks were accompanied by little stickers and lots of shouting out of letters and numbers (apparently my arms are CYK). I believe this is to make sure they record accurate measurements so that I am positioned in exactly the same way for every dose.
  • Art class complete, the CT scanning began. It takes a matter of moments and is completely painless. I did start to get pins and needles up my arm at one point (I think this may have something to do with the ongoing peripheral neuropathy in my hands), but thankfully it did fade so I didn’t need to move.
  • After the scan came the fun part – the tattoos. A bit of ink, a few tiny pricks, some cotton wool to stem the slight bleeding (I bleed at the sight of a needle) and it was all done!
  • Dignity restored, I was handed a piece of material to bring with me to each session (I was lying on it so imagine it is to do with the alignment or protection – if you know please post here) and my times for the 15 blasts. I now know that 2pm on Monday 15 September is the end! 
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Lesson of the day? Don’t wear a white bra and shirt to a radio planning meeting. A bit of blood and felt tip do not clean clothes make! Also, maybe best not to wear sandals in hot weather that make your feet a little whiffy. 

I was also amused that the book I am currently reading started to allude to the children’s book We’re going on a bear hunt just before I was called in for my appointment. Regular readers may remember my connection with the book and the words inside. Click here for lesson 107 and a quick reminder! 

Biro dots in place, I am ready for my blasting!

NB: as a side note, my piece on running for Breast Cancer Care, has been picked up by The Guardian and is currently on the homepage and the Life and Style section. Duncan’s marvellous pink shorts have made it into the nationals! Click here to see them in all their glory.

Breast cancer lesson 132: Every end is a new beginning

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With the end of active treatment fast approaching (currently down as 15 September), my thoughts have been turning to celebrations and a way of marking my official independence day. It’s a moment I never thought I’d have to experience – let alone celebrate – but it’s a moment I intend to enjoy.

Of course, I have considered the more conventional route of a party. But when the people I want to thank are all across the country (not the mention the world), it doesn’t seem quite right (and the pink hearts thank you campaign is already well underway). So, I have decided on a less conventional course of action (would you expect anything less?). That’s why, on Sunday 14 September, I will be making my way to a starting line at Wembley for the Run to the Beat 10k.

Marking the end with another starting line sums up how I feel about moving on. It is fair to say that running (and exercise in general) has been a real lifeline for me over the last seven months. It has cleared my mind and kept me from busting out of my clothes. It has lifted me when I felt like falling (so much so that it is the subject of my latest blog of Breast Cancer Care – click here to read). And, it is something I want to make space for in the real Jackie world, when I return to it in October.

For me, October is a new start, a new chapter in my life. It’s what I have been fighting for all along, so it is only fitting that I run towards it and grab it with both hands. Another 10k will keep me focused (and help me conquer the fatigue associated with radiotherapy). And, this time, I want to run the distance (so I can convince myself that I can conquer an even bigger challenge next year – watch this space).

Coming so soon after my last run (and being the same distance), I feel it would be wrong to ask for sponsorship in exactly the same way. So, I have a plan. I will be running the race for the amazing charity CoppaFeel (adding to my work as a Boobette, which you can read more about by clicking here). Rather than sponsor me, all I am asking for is a pledge from you. This pledge is simply to buy me a drink to celebrate the end of active treatment. For every pledge I receive, I will make a donation out of my own money to CoppaFeel. As I see it, it’s a win-win situation. CoppaFeel gets much-needed funds, I spend my hard-earned cash on a great charity rather than London room hire, you don’t have to travel to an end of active treatment party and I have an excuse to see you all individually to make good on every pledge. I really hope you’ll get behind my idea and help me celebrate, so I can enjoy your company at the same time as raising money for a fabulous charity. Convoluted I know, but I have never been known for taking the easy route!

To pledge, all you have to do is post here using the comment field. Don’t worry, it might just be a cup of tea. And, it doesn’t have to be collected soon. But, now I can taste again, it won’t be a Ribena or a cranberry juice.

The treatment chapter of my life is one I am keen to close. But, I am in some ways thankful it was opened in the first place. It has made me see that if you spend your life wishing for the next big event, you will miss out on living. The next big event might not be one of your choosing. In life, it’s the every day – and not the once in a while – that matters.

Best get those tatty old running shoes out again!

Breast cancer lesson 131: Why some risks are worth taking

Oncologists and travel insurance companies have one thing in common. Neither seems to go out of their way to promote the idea of holidaying while on chemo. While my oncologist does take a rather relaxed view of getting out and about (he believes that infection is more to do with the bacteria you’ve already got in your body rather than what you’re exposed to), I am not sure even he would advocate packing my immunity boosting injections in a cool bag and setting off into the sunset in search of something I can actually taste. So, that’s why I didn’t ask him.

Now, before you think me reckless, I can assure you I informed my oncology nurse (haven’t seen my actual oncologist since April), researched all nearby hospitals, took down emergency telephone numbers and packed a whole bag of pills and creams to see me through (even without shampoos and hair products, you don’t travel light on chemo). I didn’t need a passport and the closest to extreme sports I got was walking up a steep cliff on the coast path. As far as risks go, escaping the big smoke for a breath of restorative fresh air and a few cliff top walks is a risk worth taking.

In many ways, it was the perfect holiday. We walked, we talked, we ate lovely food (some of which I could taste), we cycled the Camel Trail, we played pool, we relaxed and we even enjoyed the sunshine (as a childless couple, holidaying in July and August hasn’t happened since university)! As you saw from lesson 130, I managed to tick off number 17 on my Brighter Life list (click here for a recap).

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From a chemo perspective, I broke a few rules. I ate out in places I didn’t know. I ate shellfish and soft cheese. I gobbled up runny eggs. I may have slightly over-exerted myself on the Camel Trail. I carried a few too many heavy bags (less chemo more Lymphoedema risk). And, I went out in the sunshine. But, barring one spiked temperature that went down as quickly as it went up, I have returned relaxed, refreshed and a little sunkissed (factor 50 does allow a slight glow) and ready for my radiotherapy planning appointment and tattoos later this week.

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When it comes to holidays, I have always had a bit of a bad habit. For the first few days, I relax and revel in the fact we have a week away together. Then, as the halfway point comes, I suddenly become focused on time slipping away and the prospect of returning home. It always feels like everything speeds up as we race to enjoy what’s left of our break.

This time, however, I broke the habit. I am happy to say, I enjoyed every moment and every mouthful of food (the bits I could taste anyway). I enjoyed the life I’ve been given, rather than wishing it away.

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If I could sum up our holiday in a moment, it would have to be our walk to Rocky Valley, just north of Tintagel. Rocky Valley is small gorge-like valley close to the sea that is only accessible on foot. I heard about it on the BBC show Secret Britain back in 2011 (a man talked about it being the perfect location for his marriage proposal) and had been determined to visit it (back then in the hope the romance of the place would rub off on Duncan). Sadly, Duncan hurt his knee and couldn’t complete the walk in 2011 and, when we returned to the area in 2013, heavy rain stopped play! This time, however, we made it – navigating many steep paths in the process. I remember standing on the path explaining my 2011 proposal plot to Duncan (there was a lot of laughing) and thinking how lucky I am, not just to be alive, but to not have to think every romantic spot is a possible proposal destination (after 13 years, it was pretty exhausting). I also remember thinking that we nearly didn’t make the journey, content as we were with relaxing in and walking around Polzeath. It wasn’t planned (like most of my holiday adventures). But, we made the effort, made the most of our time there and ticked off something that should have been on my Brighter Life list. Reaching the little National Trust sign made me happier than I can describe.

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Of course, I am not advocating that we all pack our bags and travel miles from a hospital. But, taking a step away from London life, with its hospital appointments and daily cancer reminders, was really invigorating and helped me reflect on the last six months. For those of you contemplating a mini getaway on chemo, here are a few of my top tips:

  • Don’t forget your thermometer: You may get to leave the hairbrush at home, but a digital thermometer is a must. The battery on mine decided to play up just as I was spiking a temperature, but I am so glad I had it for peace of mind.
  • No scrimping on the sun tan lotion: Sun sensitivity is a big deal on chemo, so it’s important to cover up where possible and slap on the lotion. Always one to burn just looking at the sun, I was thorough in my application and am glad to have achieved a slightly healthy glow.
  • Set reminders for those pills: When life doesn’t follow its usual routine, it is easy to forget things like injections and pills. I packed everything from savlon to co-codamol for back-up, but set phone alarm reminders for my clonidine, injections and fluconazole. It worked a treat.
  • Know your options: I am a great believer that if you prepare for the worst, the worst won’t happen. That’s why I researched all hospitals in Devon and Cornwall and kept a list with me of essential numbers and addresses (along with the quickest route to a few key ones). Combined with my oncology card I knew I had all bases nicely covered, should the words Neutropenic Septicemia rear their head.
  • Give tap water a boost: I always order tap water in restaurants, but was slightly worried I wouldn’t be able to taste it properly and have to turn to sugary soft drinks (which get boring very quickly). Enter the humble lemon. This zesty treat transformed my tap water, making it taste lovely even with chemo mouth.
  • Work the menu: Eating out is a big part of a holiday for me. Determined as I was to enjoy it even with questionable taste buds, I opted for meals that included anything from lemon and capers to beetroot and white wine vinegar (the more acidic the better). Work out what works for your muted taste buds and then work it in to your menu choices. I nearly kissed the waitress on Wednesday when she gave me a free sample of white wine to see if I could taste it (it is always worth asking to see if they will oblige). It was beautiful, so we ordered a bottle!
  • Pack those snacks: There’s nothing like an extra strong mint or a jelly baby to help give your taste buds a lift. I also packed some spices so I could add some kick to our breakfasts and requested ice lollies for medicinal purposes (fruit pastilles lollies are quite exciting, I must confess)!
  • Take a break: Tempting as it is to pack the itinerary with day trips and adventures, it is important to pace yourself. After a few days of cliff walking, me and my bald head were in need of a quiet day or two. Rest and relaxation overlooking the sea is certainly much nicer and sitting in the shade in the living room at home!
  • Try something new: Whether it’s a walk to a previously undiscovered (by me at least) section of coast path, a ride on a steam train through the countryside or an activity you’ve been desperate to try, I would encourage you to seize the day. Enjoy every moment (as long as you don’t forget tip number 7 in the process)!
  • Make it memorable: We none of us know how many holidays we have left, and we are the only ones who can make each one a holiday worth remembering.

With a little bit of planning, a trip away needn’t be as risky as you think.

If you’re heading off soon, happy holidays! And, if you’re not, maybe it’s time to start work on a Brighter Life list of your own to encourage you to take the next step.