Breast cancer lesson number 45: If it helps, pass it on

Throughout my life, whether it be guide camp, bikram yoga, school, work or swimming, I have always been the one to look the part. If it comes with a kit list, I am in my element. And, if it doesn’t, I will feel duty bound to create one. I buy the t-shirt and, eight times out of ten, I do detach the price tag! (One notable exception is a yoga top that I know would be guaranteed to put people off their postures. I like to look the part, not get arrested!)

The same goes for cancer. Our house is packed with every factsheet and leaflet going. Given the seriousness of the illness, I didn’t think my old tracksuit bottoms and loungewear wardrobe were quite up to scratch. So, two weeks after being diagnosed I made a trip into central London to buy some new pairs (along with zip-up tops and button down nightshirts). I bought a White Company toweling robe because it was ‘essential’ and even found matching slippers to go with my hospital dressing gown. For the next stage, I already have the hats on order, ginger tea in the cupboard and udder cream on the bathroom shelf. I have booked my ‘wig referral’ and my PICC cover research is also well underway. That chemo chair is coming, and I want to be ready!

Something wonderful happened to me yesterday while trying to compile the ultimate chemo kit list. First, I posted my chemo queries on a secret Facebook group (it’s called the Younger Breast Cancer Network (UK) and it’s open to any young women with a breast cancer diagnosis). Within minutes, there were so many great recommendations posted (from ice pops to boiled sweets). Then two women sent me private messages offering to pass on both unused and rarely worn items (that probably seemed like essential purchases at the time). When I received these messages I was so touched by their thoughtfulness. I was also reminded of the fact that I am not alone in my desire to stock up and take the ‘Be prepared’ Scouting motto to extremes!

A lot of the time, what we’re buying is specific to the treatment we’re having. In truth, I probably won’t need a sleep cap again and there is such a thing as too many headscarves. I will try and be inventive in redeploying the more fabric-based items, but I was inspired by these women (my latest kind strangers) to think about how I might ‘pass it on’ too. In lesson 37, I talk about the concept of ‘passing it forward’ and starting a chain of kindness. I would like to think when my caps have done their time, they could be warming someone else’s head. I would love to imagine someone getting joy and a self-confidence boost out of one of my summer caps (that have admittedly not made it onto my own head yet). I would also like to think that I could share more than words with others facing up to a breast cancer diagnosis.

In both cases, I have accepted their kind offers. In return, I have asked each one to nominate a breast cancer charity so I can make a donation. I plan to pass on the items that have made me smile (or brought me relief) when cancer has had enough of me and I would encourage anyone reading this to find a way to do the same. While I am not geared up to be the cancer equivalent of freecycle (or a cancer swap shop), I would like to think I could help you find a new and loving home for your cancer cast-offs (there’s a swap shop in the secret group for starters on which I could post items). If you have something to share and no one with which to share it (or are a hospital or charity looking for donations of drain bags or other treatment-related items) please post here or contact me directly (see Get in touch for more details). Together we can share the love – and the expense!

Second-hand comes with a story attached and that thought makes me smile.

Breast cancer lesson number 44: Living with cancer doesn’t just mean being treated for it

It’s official. I am being stalked by cancer. It is not enough for me to be diagnosed with the illness. Everywhere I go, I am bombarded with adverts, campaigns and television plot storylines. I can’t even go on Facebook without seeing the latest no make-up selfie. I keep asking myself has it always been this prevalent? The answer is probably yes. I just wasn’t looking.

Have you ever found that when you learn about something new, you suddenly find yourself seeing it everywhere? For me, it started with a train journey after biopsy day. Suddenly, it seemed every carriage brought with it a message about cancer. After I was diagnosed, I felt like every advert break on TV was talking to me in some way. Is it strange that the first film I watch on returning home from hospital ends up with a bit of cancer at the end? Is it stranger that the book my mum was reading at the time took a turn towards breast cancer halfway through? Even the TV soap Eastenders decided to get in on the action – just as Hayley was saying her goodbyes on Coronation Street.

Interestingly, I am not alone. Apparently I am experiencing what is known as ‘frequency illusion’ or the Baader-Meinhof Phenomenon. What this means is that while you think you are seeing things more often, it is likely that whatever it is you’re seeing has been there all along. A lot of discussion on this subject surrounds the discovery of things that you’ve never heard of before (a town name or a song title for example).Ok, I appreciate cancer isn’t new to me. But, until 17 January, it was a generic term to describe a serious illness in different parts of the body. I have known loved ones who have been affected by it, but I wasn’t being reminded of it every day. My cancer radar is now in overdrive. Trust me, if there is a cancer story out there, I am probably going to be drawn to it.

With cancer constantly beating a drum in my head, I have been truly touched by the stories of those undergoing treatment and the way in which people have chosen to raise awareness. Only last night was I watching an inspirational BBC3 programme Kris: Dying to live about Coppafeel founder Kris Hallenga. Diagnosed at 23 with stage IV breast cancer, she has had to learn to live each day with cancer as her boss. Now 28, I think she’s doing a pretty amazing job. Then you have Lisa Lynch. Soon to be made famous in a TV programme with Sheridan Smith playing Lisa, the dark humour in her book The C Word really moved me. While she may have lost her battle (after being originally diagnosed with stage 3 breast cancer), her story lives on through her words. She will continue to inspire those going through treatment and becoming all-too-familiar with hospital corridors!

The truth is, cancer is everywhere. It affects us all. One in three people will get it in their lifetime. Cancer stories move us because they’re real. They’re being played out in your next door neighbour’s house, in your extended family, at work or, even worse, at home. We are all living with cancer and the more stories that can be told, the more awareness we can raise and the more comfort we can bring to those facing the illness.

As an aside, you may be wondering why I haven’t done a no make-up selfie yet. Initially troubled by the whole concept (my blog is positive not political hence the radio silence), I was delighted to see how much money it raised. I have donated about three times already and am storing up my selfie for when my hair falls out (I don’t really wear make-up, so it would just be a picture of me currently, and nobody needs to see that). That is the true face of cancer and I’m afraid no amount of make-up will ever really conceal its effects (a good wig, yes, but more on that after wig shopping)!

Cancer, I’d like to think one day you will just be another zodiac sign. But until then, I say bring it on (not more disease, just stories)! I would like to be stalked. I want everyone to know just how mean you are. I also want everyone to know that while you do so much harm to this world, destroying lives and ripping families apart, you have inadvertently created millions of strong, beautiful and inspiring people. You should be recognised for your contribution to the arts, the amount of amazing words and films for which you are responsible.

Yes, it would be great to think we could live in a world without cancer plotlines. But, while there is cancer, I want to be moved and touched by each and every one.

Breast cancer lesson number 43: Cure, Help, Empower, Me to Overcome = CHEMO

With the embryos now packed away in the freezer, one pixie haircut and one PICC line insertion are all that stand between me and chemotherapy. Cycle number one is planned in for next Wednesday and, I must confess, I’m already trying to imagine the side effects. Up to now, apart from a bit of pain, a lot of needles and enough drugs to stock a pharmacy, I have felt well. A week today, whether I like it or not, that’s all about to change.

They say the fear of chemo is often worse than the act of going through it. All I can say is, let’s hope they’re right (and that it’s not the cancer equivalent of ‘childbirth is fine’ so we all go into it with blind optimism). I have a rather vivid imagination and it’s currently in overdrive. This is in no small way to do with the consent form – or should I say dossier of potentially debilitating side effects. Beware drugs that come with consent forms! After seven pages listing out all the life-changing conditions I might end up with, it began to hit me that this is no normal prescription drug. This might actually be a bit grim.

For those wanting to know a bit more, chemotherapy is a systemic treatment using anti-cancer drugs. Its aim is to go after cancer cells in the whole body (not just the breast) and interfere with their ability to divide and grow. I will be going through what’s called adjuvant chemotherapy. This means it’s an additional treatment to reduce the risk of breast cancer returning after it has been removed (in some cases people have chemo before surgery – known as neo-adjuvant chemo – to slow the growth or shrink a tumour).

So, what awaits me in the chemotherapy chair? I will be undertaking something called the FEC-T regimen. First, I will enjoy three three-week cycles of FEC (lucky me). This is a combination of the following drugs:

1)    Fluorouracil (or 5FU)
2)    Epirubicin (a nice red liquid)
3)    Cyclophosphamide

Then, once I have got used to the way my body reacts to the above drugs, I will  move on to T or Docetaxel (one brand name is Taxotere, hence the letter T). This takes longer to administer and stays in the body longer (it gets better and better). And, I mustn’t forget the supply of anti-sickness drugs and steroids you get thrown in to keep said chemo drugs company.

In truth, the drugs are just words. It’s the list of side effects that leaves an impression. Everyone is different and no one knows how they are going to react. I know I’m strong, I know I’m positive, I know I will work when I can – and my consultant seems to think I’ll be just fine.

Bearing in mind, you probably wouldn’t take a paracetamol if you gave the pill packet too much attention, factsheets and side effects booklets are to be regarded with some caution. I will probably get some side effects, but if I get a lot, I will be more than a little unlucky and will be trading in my body for a better model at the next available opportunity.

The potential effects are many and varied. Rather than plough back through the consent form, here is my edit of the highlights (or lowlights depending on how you look at it):

1)    I will lose my hair: it seems the cold cap that is available will merely delay the inevitable, so I am going to lose my hair in style! Pre-chemo pixie is planned for Saturday and then, by the end of April, it will probably have disappeared. I am not particularly worried about this, am enjoying shopping for hats and am waiting for an opportunity to stand on a cliff with my bald head. Quite fancy not having to shave the rest of my body for months on end and it will, as a friend said, be interesting to see the shape of my head. My only fear? It growing back grey. At 32!

2)    I will get constipation: I doubt I’ll be able to beat eight days after hip surgery (not sure I want to try) so it will be back on the Laxido I’m sure. Whoop! You can also go the other way (now that would be a change!).

3)    I may get an infection: if my white blood cell levels drop, I will be more susceptible to infection. I plan to avoid the Underground where possible and have been acquainted with my new best friend, Mr thermometer. Apparently, if my temperature goes above 38 degrees, I will need to get to the hospital… and fast!

4)    I may vomit: having only vomited a few times in my life, I hope my strong constitution stands me in good stead. I certainly won’t be eating my favourite foods around the sessions, just in case I see them again ­– and then never want to eat them again. I hear the anti-sickness drugs can be effective but they can cause constipation (see 2).

5)    I may get fatigue: it’s fairly common, and the cumulative effect of all the treatment may take its toll.I plan to walk as often as I can and, of course, not operate any machinery if I feel tired (maybe just a kettle, a TV, a computer and a mobile phone).

6)    My sense of taste could change: I must say, I am intrigued by this side effect. Some say things taste like metal (yum) and others say they become addicted to sweet things. I better make sure I don’t overdo the baking, just in case. Let’s hope I don’t get too many ulcers and sores (another joyous side effect), so I can actually eat something.

7)    Docetaxel can cause bone pain: If it’s anything like my original hip pain or nerve pain, I will be willing these cycles to end!

8)    My hands or feet might start to tingle: This would be another treat from the wonderful T and is known as peripheral neuropathy. I am quite fond of my hands.

9)    Chemo brain: Chemo, if you’re listening, please don’t take my memory. I love remembering birthdays and running through my to-dos in my head. Take my memory and you take a big chunk of me. That’s not part of the deal.

All that, and I haven’t got started on heart problems, fluid retention, sun sensitivity, allergic reactions, blood clots, infertility or nail changes (or the side effects of Zoladex, the drug already in my system).

The truth is, by putting it out here in post form I wish to now close the A-Z of scary chemo effects. I will smile as the red liquid approaches. I will smile at my chemo nurses. I will smile as I write my first post-chemo blog. I will keep smiling until one of these things makes me smile no more.

As of this moment, I plan to take control of chemo. In an attempt to go down smiling (or better, not go down at all), I am in the market for chemo tips (I will write a post compiling them all later this week). Thanks to some beautiful friends, I have sleep caps, an inflatable bath pillow, nail varnish and queasy drops ticked off the list. I have senna. I have a toweling robe with which to dry myself and am on a mission to find the tastiest ginger nut. If you have a tip you think may help me stay strong and positive, please get in touch. I am willing to try, experiment and do anything (within reason), if I end up with a big smile on my face.

I was going to call this blog post ‘Know your enemy’, but when I finished writing it, I realised it’s wrong to call chemo the enemy. Cancer is the enemy and chemo is one of good guys (even if it likes to knock you down a few times along the way).

Here’s my deal. I’ll give you my hair, but you’ll have to fight me for everything else.

Breast cancer lesson number 42: Make your next appointment a real treat

If my diary is anything to go by, I can tell you now, NHS staff are busy (and I mean busy). Let’s face it, when undergoing active treatment, a week without a trip to the hospital (or a least a series of letters) can seem a bit disconcerting.

Stood waiting for the nurse to puncture me with a giant needle and implant of Zoladex this morning, however, I was hit not by the fact it was my third appointment of the week and it was only Tuesday, but by the fact that it was before 9am and the waiting room was packed. On each warm seat was a patient (or supportive shoulder) with their own story, their own medical history and their own treatment plan. Each one of those patients needed time. But, when you have a waiting room overflowing with people, time is the one thing in short supply.

I am in awe of the NHS. This has nothing to do with the number of needles that have made it under my skin over the last 32 years, the eight general anaesthetic procedures I have now racked up or the phone system that you do occasionally get lost in. This has everything to do with the level of care that I have received – and continue to receive – on a daily basis. It’s the breast care nurse who attended my oncology appointment yesterday just because she wanted to catch up with me. It’s the surgeon who stopped me in the corridor to tell me I was looking well. It’s the student nurse who took me to the toilet seven times in one day on the ward and gave me a wonderful shower when I couldn’t move properly. It’s the receptionist who said how great it was to see me smile. See the NHS as a large, flawed, headline-making system and you miss the point. The NHS is an awe-inspiring service filled with people who give over their lives to make the lives of strangers just that little bit better. Don’t believe me? I challenge you to go and sit in an oncology waiting room. Then, you won’t disagree.

The trouble with cancer (like so many serious and debilitating illnesses), however, is that appointment times and treatment plans are only half the battle. A consultation provides merely a window into the life you are leading and each one is often determined by the way you are feeling when you get up that day. Away from the bright lights, the smell of alcohol wipes and the understanding faces, when it’s just you and the ‘big C’, it’s easy to feel alone and invisible. The experts are working tirelessly to save your life and reassure you at every stage. They can’t be there to help with through daily exercises, to rub oil into your scars or support you as you shape a new life plan.

I am a great believer that the more positive I am when I embark on a new course of treatment, the happier I’ll be both going through – and at the end of – it. That’s why I decided early on that I needed to find a place to go where I could be treated (in a pleasurable way), supported and encouraged to rebuild my body and my life (with not a needle in sight). The good thing about living in London is, it didn’t take me long to find it. It’s called The Haven, and I have just spent the day there exploring the wonders of Qi gong and discovering a few nutritional secrets – and surprises.

Haven by name and haven by nature, the centre is designed to help anyone affected by breast cancer. Here, deciding your treatment plan is less about the size of your tumour and more about whether you’d prefer to try a bit of homeopathy, Shiatsu or craniosacral therapy. Although there are currently three centres, this is a charity with no geographical boundaries. The therapists will skype, call, email or meet in their attempts to reach as many patients as possible. It’s the care that starts when the NHS consultation room door closes.

I learned some interesting things today, not least about blood sugar management. Here are a few fast facts to tease your palate:

1)    Cinnamon mimics insulin (will be sprinkling more liberally in future)
2)    The health benefits of turmeric are only felt by combining it with black pepper
3)    Cooking with lard is not always a bad thing (in fact cooking in lard is considered better than cooking with vegetable oil)
4)    My desire to have eggs with everything could work in my favour
5)    Apparently, try a bit of raw butter and you’ll never go back
6)    Herbs and spices are a girl’s best friend. Not only do they pack meals with great flavours, they’re superb for the body too.
7)    I drink too much tea (and wine)

I came away feeling relaxed, inspired and with a burning desire to eat porridge for breakfast all next week. Talking of food, I can confirm there is actually no fat to be grabbed from my tummy currently (I appreciate this has been engineered, but it still felt good to hear it). The nurse this morning remarked on it and I was enjoying this news until I realised it wasn’t actually a compliment – it was a problem (that was where the giant needle needed to go). Thankfully, my left side stepped up to the table. All I can say to anyone having the Zoladex implant is don’t look at the needle (especially not if you’re not having cream to numb the area)!

Today taught me that it’s healthy to see more than the hospital waiting room. Fill your diary with things that make you smile and appointment times with only positive side effects and you’ll find you’re a lot stronger when it comes to facing the milestone meetings and sharp and increasing-large needles. You’ll feel better and, so too will the team dedicated to helping you get through each treatment stage.

Let the hospital save your life and the Haven (or an equivalent near you) help you get your life back.

NB: In case you’re interested, we got seven embryos. We may never have to use them, but they’re in the freezer for the next decade!

Breast cancer lesson number 41: The injecting is worth it

Eight has always been my lucky number. And, I am delighted to report, it seems to be not just lucky in life, but lucky in producing life. That’s right, the surgeon and embryologist have managed to extract eight eggs. By lunchtime tomorrow, we should find out how many of these eggs have been turned into embryos. There’s a one in 20 chance it will fail, so let’s hope the odds are in our favour this time after so much bad cancer-related luck.

The egg collection procedure (or what I saw of it) is nothing to fear. First, you arrive in your cubicle, get into a gown, foam slippers and a trendy mesh cap. Then you answer lots of questions, confirm consent and, in my case, pop a quick suppository in (it was either me or the anaesthetist doing this and I could tell by the look on his face that he’d rather it was me doing the honours). I obliged as he was the magic anaesthetist who’d managed to extract blood from me just a week ago.

The procedure room itself is the first theatre-like room I have ever seen (usually I get knocked out in a room nearby so I don’t get to see the monitors, team and sets of scrubs). Due to the fact it’s the first time I have been without my bra and corset for an extended period, they let me position myself on the bed, before attaching heart monitors, oxygen and a cannula. After a little gentle persuasion, the team took enough blood out for themselves and the oncologists so I avoided two blood tests today – and further bruising on my sore-looking left arm. Right arm was off limits as this second band shows.

Image

The last thing I remember is a syringe worth of happy relaxing juice and a further syringe of general anaesthetic. After that, they stuck a needle in my ovaries, extracted the eggs and fed me a nice cocktail of morphine and paracetamol. I was back in my cubicle with a packet of biscuits and a nice cup of tea in no time and, am now back home, back in the corset and rejoicing in the fact stage two is pretty much done. Just have to drink three litres of liquid a day (tea doesn’t count sadly) to flush my system – and wait for that embryo call.

You’d think after all this ovarian stimulation, my body might get a day off. Sadly, the oncologist I met in the morning had other ideas. My ovaries may have been swollen with eggs today for baby-making brilliance but, as of tomorrow morning, they’re going to be shut down completely until August (part of fertility back-up plan part two). Tomorrow morning, a lovely nurse at the hospital will be popping an implant under my tummy skin to release a drug called Zoladex. This clever drug (released over the next four weeks, after which I will need another implant) is designed to send me into a fake menopause. Chemotherapy can’t kill something it thinks is already dead. While I can’t say going through the menopause twice (first time at 32 at the same time as chemo) is particularly attractive (just imagine the combined side effects), if someone gives you the chance to protect you’re ovaries, you’ve got to take it. I will be well-versed in hot flushes when the menopause happens for real, that’s for sure.

As well as putting my body through five Zoladex implants, there was one further drug-related revelation in oncology. It seems that because of the fact the cancer had spread beyond the breast and into tissue surrounding the lymph nodes, I will be taking the anti-oestrogen drug for 10 years rather than five. This means that the end of treatment will be 2024 at the earliest! The good news? We should be able to come off it to try for children before the 10 years is up. Sounds a bit like extreme family planning to me.

With the eggs out, the countdown to chemo is now on. April 2 is D-day (or destruction day) and 31 March the day when the PICC line goes in (meaning four months without blood test needles). Stage three is in sight at last.

So, let’s hope we get those embryos in the freezer and let’s hope cancer doesn’t take another chunk out of my femininity. Having taken my boob, it’s already got its eyes on my hair!

Breast cancer lesson number 40: Cancer treatment is like a punishing endurance challenge. Savour those checkpoints

For me, breast cancer treatment is a five-stage race. First, you lay down on a slab and get rid of the troublesome cancer. Stage one, tick (if we ignore the fact I have to get a little cosmetic adjustment at some point in the future). Next, you get to store some babies in the freezer. Stage two, tick. With fertility over, your veins get a high dose of body-killing (or life-saving) chemo drugs. Stage three, tick. Once your body has started to recover, you get a blast of high-energy radiation. Stage four, tick. Then, if you’re still standing, you say goodbye to daily hospital visits and hello to daily doses of oestrogen-blocking pills. The finish line is currently scheduled for some time in 2019, and I have no plans to go back in training after that! After that, the only races I’ll be tackling will be charitable ones!

Tomorrow is the end of stage two. That makes it a special day (one refreshing checkpoint in this epic race). With the end of stage three planned for mid-August, it will be a while before I once again feel like I am one stage closer to the home straight. Chemo is a long stretch and I know I’ll need all my energy just to get to the end.

I have to say, sitting here with a bloated stomach that makes me wants to live in the toilet, tomorrow cannot come soon enough. I certainly don’t think a body corset, tummy scar and enlarged egg-stuffed ovaries – combined with a functioning bladder and stomach – belong together. I feel like someone is bouncing on my stomach and there isn’t enough skin to go around. Starting to find the idea of a needle in my ovaries rather attractive.

What did I feel like after completing stage one? First, there was pain. Then, there was immense relief. I’d like to say I was dancing around my hospital bed. But, let’s face it, I could barely stand. How do I think I will feel if we are lucky enough to pop some embryos in a freezer bag? First, I will be happy that the baby back-up plan is in place. Then, relief that I can walk from the living room to the kitchen without needing a wee. (I also quite like the idea of a fridge that isn’t full of syringes and vials.) Neither of these sound like great moments of celebration or markers in history. But, when there is life at stake, you’ve just got to be happy you registered for the right race and are running in the right direction.

Cancer checkpoints don’t come along very often. When they do, whether you’re on morphine or Merlot, you’ve got to grab them, get the most out of them and use the happiness (or relief) they bring to take you forward into the next stage. I may be more likely to be raising a mug of tea than a glass of wine at the moment (last night aside), but I am determined to make sure each one of these stages does not go by unnoticed (I think a lot of people design a sign to mark their last chemo session, so that’s on the to-do list for stage three). You may lose a few consultants and nurses along the way, but that doesn’t mean there are any less people rooting for you to succeed. There are just a few less appointments to attend, a few less needles and a few less worries to occupy your fact-filled mind.

This is a race I will complete – and there will be a big smile waiting for me at the finish line (and probably one of the many bottles of engagement champagne currently gathering dust in the cupboard). I am not going for a personal best and there won’t be a medal at the end of it, but there will be life. I hope you’ll be there to cheer me home. 

Breast cancer lesson number 39: Timing is everything!

Image

This is it. Inside this box is the last injection I have to administer myself as part of the fertility process (we won’t talk about the chemo-related ones just yet). No more Menopur. No more Cetrotide. Just two Letrozole anti-cancer pills and an injection stand between me and being able to have my eggs collected at 3.30pm on Monday.

Ovitrelle is a trigger injection. It stimulates the final maturation of eggs in the ovaries. That means, once I have jabbed myself with this last needle, there is no going back. I will be on the slab on Monday and, with any luck, we’ll have embryos in the freezer soon after that. The procedure to extract these eggs is something I have just read about (although wish I hadn’t) and is something I will not be reporting here. Ok, so it’s not on a par with having your stomach cut open and the boob chopped off, but I am glad I am asleep for it. If curiosity is getting the better of you, click here for the science, but please don’t ever bring it up over dinner! 

For the trigger to be effective, timing is everything. So, mum will be keeping me company tonight until 2am when I can deliver the final and important dose (she might get to watch Les Mis from start to finish as a treat). Then I get a day off drugs tomorrow (my body will probably go into shock), a light breakfast of tea and toast at 6am on Monday and a date with a cannula and some IV sedation later that day.

Of course, when the nurse called, I had my priorities right. One, what do I do with the sharps box of syringes that is currently making the kitchen look untidy? Two, what to do with all the leftover drugs in the fridge? (Sadly the answer in both cases is to bring them with us, which means we’ll be heading to oncology looking like a portable pharmacy or like we’re about to have a picnic in the waiting room. Let’s hope I get to keep the cold bag!). Three, if I’m at the hospital all day, when do I take my suppository? (There was a lot of laughter attached to that answer and you really don’t want to know more). And four, (arguably the most important question) can I have a glass of wine with dinner? I am glad to report, I got a whole-hearted ‘absolutely’ in response! (Better set the phone alarm for 1.55am just in case)!

There is one last – and rather unexpected – obstacle to overcome in this fertility challenge. It’s brown, it has a tail and it likes to enter our kitchen at night and camp out under the dishwasher. We’ve being trying to get rid of our visiting rat for nearly two weeks, but we do have an understanding that we just don’t enter its trap-filled and Nutella-fuelled lair at night. With refrigerated drugs to take, I think I may have to take a torch and some back-up if I stand a chance of getting to the pre-filled syringe without getting nibbled.

Oh yes, don’t think just because you get cancer, you can avoid first world problems. I have a list!

One last needle, one last shot of drugs and one chance to make embryos. Cancer won’t wait for a second cycle. We have everything crossed!

Breast cancer lesson number 38: If at first you don’t succeed, try, try again

Today was supposed to be a simple day. First, head to assisted conception to try and schedule my egg collection at a time that meant I could keep my oncology appointment on Monday too. Then, head to the breast clinic for the second of my arm measurements in the Lymphoedema clinical trial. In short, have a chat and stretch your arm out straight. Now, how hard could that be?

As it turns out, pretty hard. Nothing is ever quite as simple as it seems. Take assisted conception. It seems the Monday egg collection list that ‘isn’t planned until tomorrow when they know how many people are on it,’ is already pretty much full for the morning. I can only assume that has something to do with the volume of private patients on the collection list. Currently, I don’t appear on any list, but am just hoping my request to schedule it around my noon oncology and blood test appointment is taken on board, otherwise oncology might not be too pleased. Two blood tests, one suppository, one IV sedation, one egg collection and more discussions about toxic drugs await me on Monday. I’m already excited!

Determined to achieve something today, I set off to the breast clinic, practising my arm exercises on the way. As anyone who has read lesson 11 will know, I have dedicated my arm to science in order to help those trying to detect Lymphoedema as early as possible. The challenge for today? Can I get my right arm out as straight as I did a month ago? The answer? No chance. I tried (twice) and failed (twice). We even made a little graph out of the data to show me just how far off I was. My homework? More exercises until my arm is poker straight. They have two weeks to get the reading. I have two weeks to walk my arm up a wall and get it just that little bit straighter – and higher – than it is at the moment. At least I got my height measured so it wasn’t such a wasted trip for measurement man (not something I could fail at so easily)!

For those of you thinking: ‘but I thought she had breast and tummy surgery, so why is her arm hurting?,’ don’t worry, you haven’t missed a chapter. My restricted arm movement is as a result of having my lymph nodes removed (thankfully I did, given the cancer in one of the infected nodes had already spread out into the surrounding tissue). The surgery has given me a partially-numb, quite swollen and very sore right arm. It feels like someone has tightened everything inside my arm and it needs a while to loosen up. Think alien limb (whose only friend is numb new boob), and you’re not far off. With alien arm, I can write (for short periods), I can knit (for shorter periods), I can cook (as long as I don’t lift heavy pans), I can play quoits (albeit very badly) and I can lift tea (at any time), I just can’t carry supermarket shopping or, it seems, pass clinical trial tests.

Apart from a sore arm, the one thing no ANC (which means anxillary node clearance for anyone counting abbreviations after Saturday’s lesson) patient wants is Lymphoedema – or swelling. Without the lymph nodes to drain fluid from the arm, lymphatic fluid can build up in the surrounding tissues. It can be controlled, but, once it has developed (and it can develop any time in the future), it is unlikely to ever go away.

A compression sleeve is not something I’d like to wear with a wedding dress, so I am currently surrounding myself with as many tips and hints as possible to avoid getting injured or infected on that side. No one really knows what causes Lymphoedema (hence why I am on a trial), but this never-again-on-right-arm list should help reduce the risks:

The banned list

1)   Soap that dries out the skin (unperfumed moisturiser is a must for the kit bag). I think I can handle that.
2)   Very hot (or very cold water). They mention steam rooms and saunas, but am hoping occasional use is ok.
3)   Acupuncture on ‘at-risk’ arm (plenty more places to prick thankfully)
4)   Injections (woohoo!)
5)   Blood pressure cuffs (another woohoo! Quite liked it on my leg in hospital)
6)   Blood tests (don’t I know it!)
7)   Lots of weight gain (I will try, but who knows what chemo will do to me)
8)   Walking around with robot arm (being my right arm, am desperate to use it normally, so am not auditioning for a role in Star Wars)
9)   Deep tissue massage unless practitioner is specifically trained (they really know how to take away all my fun)
10) Sunburn (I have never actively tried to get burnt, but my skin just likes turning red when it looks at the sun. This could be challenging)
11)  Biting of nails (tried once, couldn’t work out how to bite them. Won’t be starting now)
12)  Washing up and gardening without gloves (I confess, I have bright pink marigolds, but am yet to put them on)
13)  Waxing or shaving the armpit with a manual razor (am hoping chemo will take care of any unwanted hair for a while)
14)  Tight jewellery or clothing (should be ok)
15)  Heavy shoulder bags (given I love to carry at least two bags at any one time, this is going to be particularly challenging)
16)  Arm strain through digging, pulling or lifting heavy bags (sounds like permission to sit drinking Pimms while Duncan does the gardening if you ask me)

NB: Please comment and add if I’ve missed any tips

Looks like I am going to become very closely acquainted with a large tub of aqueous cream (currently being applied to my tummy and boob) and antiseptic lotion (my new best friend should I get a cut, bite or baking burn).

I may have failed to achieve today’s tasks, but I still left the hospital with a spring in my step. While measurement man was measuring my height in the corridor, my breast surgeon did a double take and, realising it was me, came along to say hello. Impressed by how straight and well I looked, he gave me the biggest of smiles and said how lovely it was to see me. It may not have been a statement based on any medical examination (and I didn’t have the heart to tell him I had failed the arm test), but his smile certainly made me feel I must be doing something right. I’ll take that.

Let’s hope I can successfully be in two places at once on Monday – and that somebody will be able to find a vein!

Breast cancer lesson number 37: Be a kind stranger. You never know when you’ll need one

If you’ve ever been at the receiving end of a random act of kindness, you’ll know that a little bit of thoughtfulness can go a very long way. Kindness is the gift it costs nothing to give and the mark it leaves often lasts a lifetime.

I’m amazed and humbled when I think of all the wonderful acts of kindness that have been gifted to me over the years. For example, I will never forget the lady in the bed opposite me when I was recovering from hip surgery. In the absence of a bed on orthopedics, I was sent to the oncology ward (maybe I should have just stayed there and had my boob off at the same time), surrounded by some people with just days to live. Unable to move properly, for fear of triggering the nerve pain in my hip, it was difficult to perform even the simplest of tasks. I remember struggling to reach my water one night, only to find the lady opposite (an elderly, frail and very sick lady) had got out of bed just to fill my glass. It may not sound like a grand gesture. But, to me, the stranger in the bed opposite, it meant everything. I was wheeled out of that hospital just a few days later. She never left the hospital again.

Roll the clock forward six years and I am still touched by the kindness of strangers. Whether it be the thoughtful Waitrose delivery man (who would restock my fridge if I let him), the nurse in recovery who extended his working hours just to make sure I was comfortable or the catering lady who slipped my mum a free lunch, it’s random acts such as these that really underline what beauty there is in the world.

Only last week was I reduced to tears by the kindness shown to me by a company called Bold Beanies (they make fantastic sleep hats and beanies to help with hair loss). I ordered one navy and one pink beanie and requested the words: ‘small boobs, big smiles’ be printed on each one. A few days later I received an email from the lovely Emilienne saying the designer had thought my slogan was so good he wanted to turn it into a logo! I was so thrilled with the results, and touched by the gesture. Certainly something to smile about when the hair starts to fall out!

Image

Of course, in each of the examples above, these wonderfully kind people probably guessed (or knew from the tubes and the morphine in the hospital) that I was fighting. Trouble is, it’s not always easy to know who might benefit from a smile and a thoughtful gesture. But, chances are, we’re all battling in some way.

Travelling to the assisted conception unit yesterday, I was reminded of the train journey I took to get my pathology results. Mum and I were sat facing an anxious looking couple who seemed miles away from the train carriage in which we were all sitting. I didn’t imagine I’d ever see them again and get to the bottom of their anxiety. Imagine my surprise, when I found myself sitting opposite them once more – this time in the breast clinic waiting room. You just never know. Everyone is fighting. Everyone is hurting.

To the untrained eye, when I’m travelling to hospital now, I’m just a fairly ordinary young person probably on her way to meet a friend and have a nice brunch in town. Look at my breast cancer pin, the fact I move awkwardly when I sit down and the fact I am guarding my right side and you might find the picture changes. At the moment, my illness is pretty much invisible. But, that doesn’t make it any less real or frightening.

We’re all familiar with the concept of giving back, but this is my little plea to ‘pass it forward’ too. If someone is kind to you, find a way to pass that kindness on – or better still, be the one to start a chain of kindness. It could be as simple as opening the door with a smile, offering your next delivery man a biscuit or giving up your seat on the train (I acknowledge that smiling on trains in London may get you arrested). Random acts of kindness can turn a grey day into a day to be remembered.

So, join me today. I want to be a kind stranger and make the world just that little bit brighter… one random act at a time.

 

How to make a drain bag
If you’d like some inspiration, my wonderful friend Fran, has typed out the instructions for making a drain bag. If you’re keen to dust off your sewing machine and join me in making a few, I promise to deliver them to the hospital. With just a few sheets of material (instructions below), you could make the life of someone newly diagnosed with cancer, just that little bit better. Please email me at Jackie_scully@hotmail.com, if you’re planning to pick up some thread!

Image

Instructions below make 40 (length) x 30 cm (width) drain bag with adjustable strap

NB: I use buttons for the adjustable strap but you could use any kind of attachment e.g. a buckle.

You will need:
½ metre pretty material
½ metre lining material
2 x big buttons
Matching thread

1) Cut out both materials 45 (length) x 66 cm (width), making sure you cut the edges off first (where the material is thicker and you see little pinpricks). Also, cut two lengths of the pretty material for the strap, both 10 cm wide (1/2 metre length).
2) Pin the pretty and lining materials right sides together. Pins should sit at 90 degrees to the sewing line. Sew both sides and bottom edge as one line of sewing 4/8 from the edge of the main bag material. Cut the corners a couple mm from the sewing line.
3) Pin the two strap pieces together along one 10cm edge – right sides together. Sew.
4) Turn the main bag material the right way round and iron (into the hem).
5) Iron the strap seam so it sits open.
6) Fold the main bag material inwards for the top seam (pretty material slightly higher than lining material). Iron and pin. Sew as close to the edge as possible.
7) Fold and pin bag in half with the pretty material on the inside. Sew bottom and side seams.
8) Turn bag right way round and iron.
9) Fold the strip of strap material in half (right sides together). Pin and sew. Turn back the right way round.
10) Fold the end edges of the strap in to form seams and iron. Sew as close to the edges as possible.
11) Pin one end of the strap to the inside of the bag. Use a strong zig zag stitch to sew a square around the edge of the strap to attach it to the bag.
12) For the other end of the strap, you need 4 button holes roughly 10 cm apart (depending on the size of your buttons).
13) Sew the two buttons 10cm apart on the main bag.
14) Done!

Happy sewing!

Breast cancer lesson number 36: What really happens behind the doors of the ACU

A trip to the Assisted Conception Unit (or ACU) is like a game of musical chairs. One waiting room and three consulting rooms later, and you come out with a bit less blood, a lot less dignity, a bit more information, and a lot more reassurance that you are one step closer to making embryos.

Image

This morning, everyone wanted me – or my left arm that is. First, the nurse on blood-taking duty thought she might have a go. Thankfully a bit of gentle persuasion was all it took to encourage her that I might be best left for the anaethetist. Next, tucked away in the ‘procedures’ part of the unit waiting for said anaethetist, a second nurse (who was worried about keeping me waiting) said she’d like to have a go after having spied a juicy vein. Smiling as I dutifully extended my arm, it took two failed attempts before she admitted defeat and left me nursing a cup of tea and a biscuit.

It wasn’t long before my knight in soft blue scrubs arrived with a large syringe and an appetite for my left wrist. Eighteenth ‘sharp scratch’ of the week, and we’re there. I am proud to admit that I have still not cried in a blood test, even though my arm is starting to look like I’ve gone a few rounds in the boxing ring.

I never thought I’d say this, but the internal scan part was the easy – if not so dignified – bit (think probe, think jelly and that’s all you’re getting). After having injected myself with a combination of Cetrotide and Menopur for the last few days (balanced with a few Letrozole pills), the scan was to determine the size of my follicles and how well I am responding to the treatment. The good news is, that while my veins might be retreating under the stress of all this poking, by body is still playing ball. The follicles are growing well and, if my blood test results agree, I will be heading back for IV sedation on Monday (no doubt, at the same time I am supposed to be in oncology discussing toxic drugs and having a further blood test).

So what happens next? I wait for a call. If the call keeps me on track, I continue with my injections until Saturday, when I get to mix things up by introducing a ‘trigger’ injection called Ovitrelle and stopping the Cetrotide and Menopur. Ovitrelle is designed to stimulate the final maturation of the eggs. All being well, they will knock me out on Monday, extract what they need and then get to work in the laboratory. There is a suppository in the mix here, but the less said about that the better!

I must confess, it’s not the most romantic way of making babies. But, in what feels like a continuous race against time at the moment, it’s the best chance we have of being able to change nappies, clean up sick and join the banks of people having sleepless nights all over the Capital.

The stakes are high, but let’s just hope the chemo is kind, so we’ll never have to use our little embryos.