Tag: blogging about cancer

Breast cancer lesson number 94: How to get more from active treatment

On By Jackie ScullyIn Breast reconstruction surgery, Chemotherapy, Exercise and breast cancer3 Comments

Cancer treatment is like being signed up to run a marathon race with no training. In short, it hurts. But, just sometimes, days like today are sent along to remind us that there are plenty of pit stops along the way that are actually rather enjoyable. As long as you know how to find them that is – and make the most of them when you do!

On annual leave, you’ll usually find me tucked up in front of a log fire with a glass of wine or strolling along the Dorset Coast path. The UK is our oyster and we do our best to enjoy it. Today, however, I spent the day with my arms in the air for a really good cause.

While most of you were commuting to your desks, I was on my way to the wonderful Haven charity in Fulham to take part in an exercise video. By exercise video, I don’t mean raising a sweat (although I did have a few too many hot flushes). By exercise video, I mean a series of exercises designed to help those who have had lymph node surgery manage the risk of developing lymphoedema (or arm swelling). Ok, so it might be the world’s most sedentary exercise class and I am not about to give Nell McAndrew a run for her money. But that didn’t make it any less important.

exercisevideoday

Although I don’t think I am destined for life in front of the camera (I dread to think what my exercise face looks like and I waffled a bit on my vox pop at the end), it was a really wonderful day. I met a fantastic team dedicated to getting the medical side just right and also informing people about the latest thinking surrounding lymphoedema. No longer are we supposed to rest our affected arms and wear preventative compression sleeves. Exercise (within your limits) is the answer to ensuring we all have a really good base from which to get on with daily life. Managing the risk of lymphoedema isn’t about focusing on what you shouldn’t do, it’s about making a few adjustments to life so that you can keep doing everything you love. Saunas may not be top of the list, but everything else is pretty much up for grabs.

I also met some pretty special ladies, all at different stages of their treatment. With their positive spirits and colourful characters they were great film buddies. It will certainly be interesting to see the final cut, that’s for sure. Don’t expect a screening!

Never did I think that three rounds into chemo, I would be described as the fit one. It’s also strange to think that my hairless self (albeit in a hat) will now be immortalised, a DVD reminder of the fact that even when chemo piles on the side effects, you can still come out smiling.

Amusingly, I got a few odd looks on the tube. It seems a cancer patient with a hair loss cap, jeans and a t-shirt presents no challenge to onlookers. Dress her in leggings, trainers and yoga tops and suddenly she becomes an enigma. An active sick person. Does she deserve a seat or a round of applause? After what feels like about a thousand arm raises, I think I’ll take the seat thanks.

The great thing about today is it doesn’t end there. I am just doing a quick dress change before making my way to ZSL London Zoo for a safari gala dinner.

Take that cancer!

Breast cancer lesson number 93: How to face cancer with confidence

On By Jackie ScullyIn Chemotherapy, Happiness2 Comments

I think it would be fair to say that my make-up routine is less of a routine and more of a lifelong period of experimentation. I have the creams, the mascara, the eyebrow pencils and the obligatory make-up bag, but it seems that no matter how much stuff I apply to my face, I never look like I have any on. Some may call this skillful. Sadly, there is nothing skillful about it.

Whether or not you know your primer from your restorative lash treatment, when you’re undergoing treatment that dries your skin and steals away your eyelashes in the night, make-up does have its uses. For me, it’s not so much about hiding what’s happening to me, but more about giving me back the bits that make me smile. A hat can hide the lack of hairdo, but I do quite like to see some eyebrow when I look in the mirror.

In an attempt to help me reclaim my face, friends, family and medical professionals have been quick to send me top tips, hints and product recommendations. In the creams department, for example, I am sorted – so much so I’m surprised I don’t just slip right out of my clothes! Having diligently filled the bathroom with everything from Gimme Brow to Brow Zings on the make-up front, however, I do feel like in danger of looking more like a pantomime act than a publishing professional. Painting on eyebrows? I’d rather have a PICC line flush thanks.

Image

Enter Look Good, Feel Better (LGFB). This amazing international charity offers free skincare and make-up workshops for those coming to terms with the visible side effects of cancer treatment. With volunteers from the beauty industry (who better to teach you about wig care than a film make-up artist?), each session is a masterclass packed with trade secrets and handy tips. In two hours, you get a 12-step make-up routine and all the branded goodies to match (designed around your skin tone). And, even though you do have to sit in front of a mirror for an extended period, you do get an awful lot of laughing to go with your lipstick and eyeliner.

There are many things in life I never thought I’d have to worry about. Matching my foundation so that it blends in with my bald head is one of them. Now, however, I don’t just have the concealer, I know where (and most importantly when) to apply it. I can use green primer without looking like Kermit the frog and can advise you on which eye cream will make your bags glow in certain lights (not a great look for a wedding). I will also never use my eyeliner in the same way again. While ‘looking good’ may be pushing it, I left the session looking a whole lot better and, it felt great. To ease you in, I am only posting a photo of the goodie bag today. I need a bit more practice before I share my new eyebrow-shaping skills with the world and I’d rather not scare you off.

For the first time in my life, I have three amazing beauty secrets to share! First, book on a Look Good, Feel Better event today (they are extremely popular so click here to find your nearest location). Second, Macmillan Cancer Support does a really useful guide called Feel More Like You, which provides expert advice on skin, nail and hair care during treatment. And, lastly, only put green primer on the red bits, otherwise you might end up looking a lot worse than you feel! 

Of course, the one thing that a wonderful workshop such as this can’t do is account for nature. And, by nature, I mean the fact that I currently have a rather fetching mosquito bite plonk in the centre of my forehead. Perfectly timed for the filming of an exercise video tomorrow (oh yes, more on that soon)! That’s something no amount of make-up is going to sort.

Breast cancer lesson number 92: Embrace the change of pace

On By Jackie ScullyIn Chemotherapy3 Comments

Yesterday, I was defeated by the vacuum cleaner. Strange as it may sound, a piece of plastic (albeit a well-crafted one) with multiple arm extensions brought a dust cloud to my otherwise bright and sunny day.

It could have waited a little while longer (even though the moths are getting a little friendly). I really didn’t need to clean the whole house. But, never one to leave a job unfinished, I dug out the vacuum after a lovely day with friends and had a good go at the carpet. And, you know what? I really wish I hadn’t.

Now before you think I’ve lost the plot, this is not a blog post about vacuuming (fun as I know that would be). This is the post about just how hard it is to go from the active, always-on-the-go Jackie with her ultimate to-do list to the chemo Jackie who often needs a bit of a sit down. Satisfaction comes from a to-do list that goes down not up. And, currently it feels like the list is getting longer by the day.

The trouble is, I wasn’t exactly overdoing it. A drive to see good friends, a short walk and a few household chores does not a packed day make. Admittedly, I probably should have saved the hob cleaning for another day, and didn’t need to do that second load of laundry. But, when chemo gifts you a window of energy, it’s really hard not to grab it.

Chemo fatigue is something about which I haven’t written so far. That’s not because I didn’t know about it or hadn’t experienced it. It’s because I thought that by not mentioning it, it might just go away. No one wants to feel like they’ve run the marathon when they’ve only just climbed the stairs – especially not at the age of 32. I spent my 20s watching friends have fun on the dance floor while I battled hip pain. I thought I’d be the one to set the pace in my 30s. Maybe next year…

The truth is, I have no choice but to slow it down. And, if I’m honest, that’s probably no bad thing. Nobody needs to watch TV while simultaneously tidying the coffee table, sorting papers and writing a shopping list. The dust can wait for another day (along with the wonky doorstop and the half-painted wall). Fighting cancer drugs is enough for most agendas and, for now, it has to be enough for me too.

Of course, the physios and occupational therapists do have a few tricks up their sleeves to help us make the most of every day. The secret? Pacing! The aim is to avoid getting into an overactivity-rest cycle. That means doing little and often every day to build up strength rather than trying to cram in a whole week’s worth of activity into one day just because you feel well (and then needing a few days to recover). That does mean planning in tasks (and sticking to the plan), but the plan has to be realistic! The motto is ‘do what you planned – not what you feel like’. It sounds simple. But, when running before you can walk is your default position, it takes a bit of getting used to.

So, for now, I shall try my best to sit back and enjoy this change of pace. And, if you are currently in the middle of a chemo cycle (or about to start), I hope you can too.

Just don’t expect a fluff-free floor on your next visit!

Breast cancer lesson number 91: Be kind. Everyone you meet is fighting a hard battle

On By Jackie ScullyIn Chemotherapy, Happiness, Reflections on cancer4 Comments

Bearing my soul to all who know me – and quite a few who don’t – has brought with it some rather unexpected and surprising moments. Fellow sufferers have found comfort in a friendly face. Strangers have become friends. Old friends have become new friends. Distant friends have become closer friends. Family have become more like friends.

Every comment, post and email has meant the world to me. But there are a few that have shown me just how little we really know about those around us – and the challenges we all face. From miscarriages, grief, illness and tumours to difficult pregnancies, IVF, house issues and family troubles. You name it, they’re all there, on a doorstep near you (and maybe even on your own).

Image

I feel so privileged and moved that people have been able to reach out to me at this time and share the sadness that occupies their waking hours and disturbs their sleep. But, I also feel sad that had I known about some of them earlier, I might have been able to make a difference at a time when they needed me perhaps more than they do right now (a hairless cancer fighter is probably not first in line for the trenches!).

People often describe cancer as the invisible illness. And, in many ways it is (especially when it grows silently inside you at a time when you are feeling really well). But, the thing about cancer is that you don’t need to understand the complexities of a diagnosis to know that someone is fighting for their life. Cancer comes with its own support network. People get it. And that makes it so much easier to share with the world. Sadly, other challenges (each one difficult and hard in their own right) cannot be softened by such a public airing. 

So this is my little way of saying spare a thought today for all of life’s fighters. I can guarantee they are closer than you think.

Quick PS: As a rather more light-hearted aside, I confess to having bought some shorts. Apologies now if the weather takes a turn for the worse. But, if it is any consolation, they are really nice shorts and Duncan will permit me to wear them further than the garden, which is a first!

Breast cancer lesson number 90: Life is short. There is no time to leave important words unsaid

On By Jackie ScullyIn Happiness, Pink hearts3 Comments

I am grateful that last night was just a night of sweats, broken sleep and nasty nausea rather than a night wedded to the washing-up bowl (I must stress the bowl has been retired from active washing-up duty in case you were worried). And, looking at the faces of mum and Duncan in the morning, I think I wasn’t the only one who was grateful!

I made it through. But I had to dig deep. The nausea and night sweats were among the worst I have ever endured. The Aprepitant drug worked wonders on the sickness and the quick hat and sock changes helped with the hot flushes. But there is one other trick I’d like to share, which – in between the waves of nausea – made the whole experience memorable in a more positive way.

I have never been one for counting sheep or filling my mind with the colour blue in an attempt to drift off. So, last night I introduced a new technique. From the beginning, I listed out all the wonderful and kind messages and gestures people have sent through over the last four months. By this, I don’t just mean the obvious. By this, I mean the well-timed tips, the lucky pre-surgery safety pin, the comment from an old schoolfriend about what she thought of me back then and how I hadn’t changed, the thank you from a girl I once helped in a small way and never thought much of it. Just yesterday, a lady I had met a month ago and showered in cancer-related tips stopped me in reception to thank me for my kindness. Those words meant everything to me. Each one of these moments has made an indelible mark on my heart. And, yesterday, I used them to build a patchwork quilt of happiness to comfort me at my lowest ebb. The great thing is, when I got out of bed this morning I smiled knowing that I have just scratched the surface, with many more patches to add.

Being at the receiving end of a lifetime of kindness has got me thinking about just how much we really say to those that inspire us and make us smile. When was the last time you turned to a friend and thanked them for just being there? When was the last time you contacted an old acquaintance and told them just how big an impression they have made on your life? When was the last time you thanked someone and meant it from the bottom of your heart? People can’t guess you’re your thinking unless you tell them. When the business of life gets in the way, it is hard to step back, reflect and not take all those you love and admire for granted. But, I can tell you now, there is so much I want to say to people while they are still around to hear it! People come and go in life, tucked away in chapters. But, their kindness will live on through you. I’d love to think that if someone were to cut me open (in a nice, non-cancer-surgery kind of way), I would be made up all of the brilliant people who have touched my life.

Image

So, I have chosen today, laced as it might be with a cocktail of drugs and a vat load of liquid, as the day to hand out my first pink hearts. The first is for my astonishing and truly wonderful mum who is one of the most beautiful people you’ll ever meet. She may weigh less than me currently (although we are having words), and she may not be able to take the pain of a cancer diagnosis away, but she has made living with it as comfortable and relaxing as possible. She has put her life on hold, so that I have the chance to get mine back. As a daughter, I have not always thanked my mother quite as often as I should. But she means everything to me and I plan to spend the rest of my days reminding her of that. While I won’t share the contents of my letter with you, I will share one line: ‘Life is no easy street, but you have made walking down it, so much more enjoyable.’

And, the second heart? You’ll just have to wait and see! I will also be posting more details of my pink heart plan (first mentioned in lesson number 30 – click here) in the weeks to some to inspire others to send ripples of kindness all across the world.

Image

All I ask is that you take a moment of your day to thank someone who matters to you. What is it about them that makes you smile? What it is you should have told them years ago, but never thought to mention? How have they helped make you the person you are today? I guarantee you’ll feel good saying it – but not as good as the person hearing it (especially if it’s for the first time).

Make today the day you start following your heart. Trust me, there’s no time to lose.

NB: it will take years to deliver all these hearts, so do bear with me. The accompanying letters are all handwritten and contain a piece of my heart. Plus, I have to make sure I don’t get arm ache! 

Breast cancer lesson number 89: A chemo day can be a good day

On By Jackie ScullyIn Baking, Chemotherapy, Happiness4 Comments

Believe it or not, today was a good day. I should qualify this by saying that most good days do not come with a helping of toxic drugs on the side. But as days on active treatment go, it was a complete success.

Image

I passed my blood test (yay!). My levels are good for someone on chemo (could be seen as a compliment). I had a lovely lunch with my lovely mum (that I could taste) and a walk along the river (in the sunshine). I met a friendly nurse who furnished me with a whole rucksack full of pills, mouthwashes and eye drops (including the mighty Emend/Aprepitant for vomiting). I got the chemo drugs (yay-ish because it wasn’t delayed) and actually waved goodbye to Epirubicin as the last red syringe was drained into my PICC line. I now know the name of the lovely lady who does my PICC line flushing every week (she doesn’t wear a name badge and after a few sessions, I felt it would be wrong to ask). I have sorted out my appointments for the next round (chemo is moving to a Friday). And, most importantly, the chemo unit LOVED the ginger cookies (although you could question whether or not a unit of patients with questionable taste buds is a robust test).

I also discovered a few new things (and we all know how much I love learning things)! One, there is such a thing as a menopause clinic, because I’ve been referred to it in an attempt to help me get a convincing night of sleep! (watch this space). Two, baked goods (with ingredients listed) are welcome on the unit (I did wonder whether health and safety would get in the way). Three (not the best revelation), the next set of chemo cycles requires me to have around 24 injections to help keep my white blood cell count at a good level (nothing like a few sub-cut injections to remind me of those fertility days). And last but not least, according to my stats, somebody discovered my blog by searching ‘extraordinary boobs’. Whoever found my blog by searching for this, all I can say is: great search terms (I wimped out after Googling it and sizing up the main subject matter) and I am sorry that I really don’t have extraordinary boobs. They are certainly not ordinary, but I am not sure that is what you were after!

Here’s a piccie of me in the unit ‘copping a feel’ (albeit not exactly going for a full grab) to show my support for the wonderful charity Coppafeel (click here), which was set up by a wonderful women called Kris, who was diagnosed with Stage four (advanced breast cancer) at the age of 23. Her mission is to make sure young women are more aware of their boobs, completing those regular checks that could just save their lives. It’s a simple and powerful message, and one I am going to help her spread over the coming months and years.

I may be nibbling my ginger cookies at a rapid rate to tackle the nausea inside me, but I think, as days go, it was a goodie. Let’s just hope I don’t have to make friends with my old washing-up bowl again tonight!

Image

I hope you’ve all had a good day!

 

Breast cancer lesson number 87: The answers to those burning questions are closer than you think

On By Jackie ScullyIn Breast reconstruction surgery, Charity, Chemotherapy, Fertility, Reflections on cancer1 Comment

How often have you walked out of a consulting room partly reassured by all the questions answered and also partly plagued by the one or two things you just forgot to ask? By this, I don’t mean (if you’re anything like me) the questions you’ve diligently noted down in order to quiz any unsuspecting consultant? No, by this I mean the bigger picture questions that keep you awake at night or creep up on you when you least expect. In cancer land, that is a question like: ‘How long do you think the cancer was in my body before I found the lump?’ Questions that have no real bearing on the treatment plan in front of you, but questions that are no less important or interesting.

Since diagnosis day, I have been making a note of ‘random questions I wish I’d asked’ for a blog post at the end of active treatment. Currently on the list (in addition to the above) is ‘what do you actually do with the cancer you extract?’ Is there a cancer bin? Is it incinerated? Or, can they store it and retest it should there be developments in science? I know it sounds strange and I would guess the answer is incineration otherwise they’d have to take out extra storage space. But, it’s just one of those questions that for someone only recently inducted in to the world of cancer and unacquainted with the inner workings of hospitals actually finds rather interesting.

There is one question, however, that I have wanted to know the answer to ever since I came round from general anaesthetic number two after my egg harvesting.

And, on Saturday at Younger Women Together I got my answer. Younger Women Together is a fabulous and free two-day event held by Breast Cancer Care for women aged between 20 and 45 who have been diagnosed with primary breast cancer. Not only is it a great opportunity to meet and share experiences with other women in a similar position (none of which I have managed to spot in my own hospital), but it is also – with its expert speakers and workshops – the perfect environment within which to ask a few of those burning questions. I couldn’t recommend it highly enough to young women who are grappling with a diagnosis, undergoing treatment or trying to find their ‘new normal’ in the years that follow. I left inspired, moved and supported. And with my answer!

Starting with ‘the question’ here are a few things I am glad (and thankful) I now know (apologies in advance if I get any of the detail wrong, just passing on what I scribbled down):

Fertility question: If I am rendered infertile as a result of treatment, am I still able to carry the embryos frozen as part of my fertility preservation before chemo?
Answer: Yes! It may involve a few drugs, but just because your body has stopped producing eggs, it doesn’t mean you can’t carry one you’ve already harvested. Great news.

Fertility question: Can you test your fertility status before going onto Tamoxifen?
Answer: With difficulty if you are recovering from chemo and on Zoladex. It is possible to test for fertility using blood samples (for your hormonal profile) or scanning, but drugs can interfere with the results until your body is back to normal. Testing on Tamoxifen is also not advised due to the fact it stimulates oestrogen receptors in the uterus, while reducing oestrogen levels elsewhere and can cause temporary loss of or irregular periods, so may also give misleading results.

Fertility question: Can you predict the chances of someone losing their fertility during chemo?
Answer: The chances depend very much of the drugs used in the chemo regime. Alkylating agents (such as the C in FEC) are considered more problematic. Having said that, the C when used in the CMF regime seems to cause more problems than when it is used in the FEC regime. The Tax regime is less concerning. Statistics suggest women under 30 have a 5% risk of losing their fertility compared with a 50% for those between 36 and 40. I am somewhere in the middle! Age, drugs, dosage and a woman’s ovarian reserve (before treatment) help doctors predict an individual’s chances.

Fertility question: If you get pregnant after a cancer diagnosis, should you expect to be treated differently?
Answer: The short answer is yes. Chemotherapy can cause possible cardiac issues, which may not present themselves until pregnancy when the heart is working harder. This means echocardiography and closer monitoring is probably advised. There is a small increased risk of complications at delivery and a 30% increase in the C-section rate (although it is not known whether women are choosing this option as a way of taking more control). Where breasts have been reconstructed, pregnant women may wish to wear a prosthesis if the unaffected breast grows and leaves the woman feeling lopsided!

And a few ‘Did you knows?’:

1)    According to the latest statistics, 537 women between the age of 30 and 34 get breast cancer in the UK every year. That is compared with 2,899 women between the ages of 40 and 44.

2)    Even with a mastectomy, there is usually some breast tissue left behind in the affected breast.

3)    A new report just out has suggested that Phytoestrogens (basically oestrogen-like chemicals found in plant foods such as seeds, beans and grains) can reduce the risk of cancer.

4)    Omega 3 can help with joint inflammation and chemo brain (or memory issues)!

5)    Valerian can help with sleep problems while on chemo.

6)    Figs contain calcium

7)    And, wise words from speaker and fellow cancer survivor Kelly Short: ‘Don’t think about yesterday, you were a different person then.’

8)    www.insurancewith.com is a useful insurance provider for those looking to travel with a cancer diagnosis.

There was also plenty of exercise-related material I will save for another day. As you can probably tell these two days have enhanced my life – and my understanding of the illness I now face. If you’re a young women with a breast cancer diagnosis, I would urge you to book on today for a strong dose of inspiration, motivation and practical advice. Click here to find out more.

And, if you have a burning question that you really want answering, why not post it here (as long as it is not ‘what is the meaning of life?’). Someone out there might know the answer, or, if it’s cancer related, I might just be able to add it to my list once I have summoned up the courage to find out which bin my cancer landed in!

NB: There is a whole other side to the event that I feel it would be wrong to touch on in a blog and that’s the amazing and wonderful women who sat alongside me over those two days. How amazing it was to sit among women who didn’t know the me with hair, who understood what it was like to spend a night awake with nothing but a hot flush for company, knew how to navigate the terminology and side effects that come with the words breast cancer and understood the importance of a smile. Less a support group and more a practical and lively forum for sharing experiences. I feel privileged to have met these amazing women.

Breast cancer lesson number 86: The secret to smooth summer legs

On By Jackie ScullyIn Chemotherapy, HappinessLeave a comment

Ok, so I appreciate the title to this blog is a little misleading. While I do have the secret, it does involve a few rounds of toxic drugs, so it is a bit of a hardcore way to solve an everyday problem.

That said, if you’ve got to endure chemotherapy, you’ve got to celebrate those perks. One whole summer with beach-ready legs is a good side effect – just a shame I won’t leaving the country to find sandy beach on which to air them. Chemo, there aren’t many things I thank you for (especially not the ulcerated tongue that is currently making it difficult to talk). But, I thank you for this.

Interestingly, unlike the dramatic overnight hair loss I experienced with my hair, my legs have been a little quieter in their elimination of stumble. Imagine my surprise this morning then, when I discovered their silky smoothness. The great thing is, I tend to be a bit slack with my hair routine over the winter, and now I can be just as slack with amazing results. I have heard that chemo does wonders for the skin. I am now starting to believe it.

The secret to keeping your eyebrow hair and nostril hair while on chemo is one I would be keen to discover. While I have embraced by baby-like baldness and my hair-free thighs, my eyebrows have started to thin in a noticeable way and losing my nostril hair means I don’t need a hot meal to make my nose run!

Chemo, let’s make a deal. You can keep my leg hair and my armpit hair (and pretty much all my body hair), but in return would you please return my head and nostril hair and my eyebrows. If not, can you make sure we have a hot summer so I can make the most of the hair loss while it lasts. Thank you.

Breast cancer lesson number 85: Bank happiness. You never know when you’ll need to make a withdrawal

On By Jackie ScullyIn Brighter Life List, Chemotherapy, Happiness3 Comments

I have experienced so many moments of happiness over the last few days at Breast Cancer Care’s Younger Women Together event – so much so I need a while to digest it all – I feel compelled to write about one of them (for now).

Kelly Short, a breast cancer survivor and someone who has moved forward from her diagnosis and treatment in a way that is truly inspirational, took the last session of the day. At one point she used the phrase: ‘Life is what happens while you’re planning something else.’ For someone diagnosed while planning a wedding to her long-term partner, it seems an appropriate phrase to use. And, as someone diagnosed soon after getting engaged, I couldn’t agree more.

Having talked through her experiences – not least a turn on UK TV in makeover show How to Look Good Naked – she touched on two things that are very close to my heart. The first? The fact that life doesn’t start after active treatment, it is going on every day and is there is be seized when you’re well enough to enjoy it. The second? She reinforced the importance of living a life based around gratitude. You can’t change the past, so why spend energy wishing you could. If you’re grateful for what you have, you won’t miss what you don’t.

What am I grateful for today (apart from the opportunity to meet so many women of a similar age tackling similar challenges)? I am grateful for the photo that was sitting on my phone as I was leaving the event. My wonderful fiancée Duncan had sent me a picture of the alliums flowering in our garden and it brought with it the biggest smile. Why, you ask? Alliums are my favourite flowers – and growing them and watching them bloom is number 27 on my brighter life list (click here to view). While it may not be a full garden of flowers, I believe it gives me my first tick on the list. And what a beautiful tick it is! Let’s hope we can add to them in the years to come. That’s nine alliums this year (10 if you count the one that got its head trampled on). Double figures next year!

Image

I have been thinking a lot about happiness over the last few days (having had it restored once my Wednesday chemo was reinstated once more). This is in no small part down to a 92-year-old lady I read about on a blog about kindness. This lady, on moving into a nursing home, took the decision to love her new room based on a description alone. She explained:

“Happiness is something you decide on ahead of time. Whether I like my room or not doesn’t depend on how the furniture is arranged, it’s how I arrange my mind. I already decided to love it. It’s a decision I make every morning when I wake up. I have a choice; I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed and be thankful for the ones that do. Each day is a gift, and as long as my eyes open I’ll focus on the new day and all the happy memories I’ve stored away, just for this time in my life.”

She added:

“Old age is like a bank account, you withdraw from what you’ve put in. So, my advice to you would be to deposit a lot of happiness in the bank account of memories. Thank you for your part in filling my memory bank. I am still depositing.”

What an amazing lady (you can read the whole blog here) – and certainly not the only one I have encountered this week. I am certainly depositing happiness and hope that by the time I reach my old age I’ll be rich in memories. I also think I might make a few tactical withdrawals on the way. Invested wisely, I hope these moments of happiness will enrich not just my old age, but my every day.

To you, my allium is just one of making spring flowers trying to make its mark. For me, it’s a living reminder of all that is good in the world. It grew because I planted it. It flowered because I nurtured it. It makes me smile, because it went into the ground on a cold, dark day at the end of 2013 when I had cancer developing in my breast. It pushed through the earth, and it now stands tall. I am pushing as hard as I can through chemo, and I remain strong. Its colour will fade, but the memory of it will stay with me forever (in fact I hope to dry it and use it as a Christmas decoration).

Whether it’s a flower in the garden, a tasty meal or a thoughtful card through the door (I got a couple of really special ones this week) put it in the happiness bank. Be grateful for every deposit. Save up those smiles because one day, you might just need to make a very large withdrawal!

Breast cancer lesson number 84: You’re a person, not a hospital number

On By Jackie ScullyIn Chemotherapy, Reflections on cancer2 Comments

There are so many things I love about the NHS. There is, however, one thing I don’t. It’s the administration. Why do I have to be the one to join the dots? Why is it that when there are plenty of other things for me to worry about, is it the one thing filling up my thoughts by night and my mobile minutes by day. The NHS is made up of wonderful hard-working people who really care. It’s just such a shame the systems connecting those people together don’t.

Today’s administrative conundrum reduced me to tears. Here’s why:

1)    Three weeks ago, my oncologist in the Monday clinic took the decision that, having coped so well with the first round of chemo, I could be referred to a nurse-led programme for the remainder of my treatment. I happily agreed and was booked in for an appointment on Wednesday 7 May. Tick.

2)    At my second chemo session on 23 April, the receptionist informed me that I couldn’t attend the clinic on a Wednesday if I am to keep my three-week Wednesday cycles. Wednesday 7 May is a week before round three and therefore too early for blood tests. She suggested I call the breast care nurses to schedule an appointment at the Monday clinic again. Made sense to me!

3)    The breast care nurses were lovely as ever and confirmed that a Monday clinic appointment was needed and, a few days later, a letter arrived through the post. They cancelled my nurse-led appointment. Tick.

4)    Yesterday (Wednesday 7 May) I received a call querying why I wasn’t at the hospital for my nurse-led appointment. I explained the situation and the fact that I was led to believe the appointment had been cancelled. The lady informed me that I no longer qualified for the Monday clinic (I guess because I am a relatively well sick person) and that this appointment would need to be cancelled. Instead I would need to attend the Wednesday 14 May clinic at 10am and then have my chemo at 11am the same day. I agreed.

5)    Once the call had ended, I felt a bit concerned about the timings. Usually a blood test should happen about two hours before chemo so that the results can be processed and the chemo drugs prepared. As a result, I decided to double-check the timings at my PICC line dressing change appointment this morning.

6)    The receptionist confirmed that my Monday appointment had been cancelled, but that the nurse-led appointment was 11am (not 10am) and therefore at the same time as chemo. She added that I am not supposed to have the two on the same day (had I not queried it, I imagine my chemo would have been cancelled when I turned up next week). Wednesday clinic means Friday chemo. She confirmed that my chemo would now have to be moved, at which point the tears started to flow.

7)    After a few more calls, the receptionist confirmed that I would need to come to hospital on Wednesday for blood tests and to see the nurse. I would then (providing the test results were positive) need to return on the Thursday for the drugs. From chemo four onwards, I would need to attend the Wednesday clinic with Friday chemo. Happy Friday to me!

In chemo land, two days is a long time. By nudging my chemo to the end of the week, three months of careful planning (weddings, parties, training, holidays, train trips) were thrown into question in the space of half an hour. I am determined to make every single event. I just wish I didn’t have to dig deep (and maybe even pack a my old washing-up bowl) to do so!

I get it. Put the well people on the Friday list so they won’t clog up A&E on a Saturday. I don’t mind being a well person (the alternative is not particularly attractive). It’s just not great to feel that no one really wants to see you and that I am being shuffled around the system to make room for everyone else. I need someone to help me control the vomiting. I want to discuss my ice-cream headaches and my taste problems. I need my next Zoladex prescription. Plus, my diary is just one big mess of scribbled out appointments and I like tidy pages. Even my appointment card has tip-ex on it!

I have a voicemail message on my phone. I think there’s an apology coming. I just wish I didn’t have to let the tears flow to get it – and a proper appointment.

This cancer stuff is hard enough without having to worry about getting a seat at the clinic (or a chemo chair). I’m a person (and a very accommodating one at that), not a hospital number in the system. Dear NHS, please don’t forget me.

NB: as an amusing aside, I met someone for lunch today who I hadn’t seen for years. I was out in Suzie (he didn’t know, so I thought it only fair to act normal). What was the first thing he said to me? ‘Wow, you’ve changed your hair since we last met.’ He will never know why this one sentence made me smile so much. Suzie is obviously pretty convincing!