Tag: Jackie Scully

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

On By Jackie ScullyIn Reflections on cancer1 Comment

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

On By Jackie ScullyIn Chemotherapy5 Comments

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

On By Jackie ScullyIn Charity, Chemotherapy, Happiness3 Comments

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!