Results tomorrow

CT scan

This is my body. From the inside, out. I have no idea what it means, other than my hips are wonky and my spine looks curved. But someone in the hospital will look at these scans and see something I don’t. Or not.

I’m very, very lucky to have amazingly generous parents who are blessed with resources. So they offered for me to have the CT scan done privately. This is a lot easier to accept when it’s someone else’s money. There are no adjectives for how grateful I am.

What this has meant is no two week wait in the queue for NHS services. I don’t feel great about being a health care splitter but I honestly and deeply didn’t think I would make it through the weeks of waiting. Other scans I’ll wait for. This one is too important. And too terrifying.

I went into emotional shock yesterday as though I had just been in some natural catastrophe or car wreck. It was a physical experience that I wasn’t coming out of. Taking action to get the scan done helped me break free of it. Mostly.

Now I have a CD full of images that reveal the answer to the question ‘Has it spread?’ but I have to wait until tomorrow evening for that knowledge. One more day. Prepare yourselves friends for the worst.

What could be

Remember that last mammogram, the one that was going to take eight weeks to get the results back from? Remember how I complained and chased and phoned and whined until they told me it was clear. Turns out it wasn’t.

Turns out the second radiologist to check it found something suspicious. There are teeny tiny spots of calcium in the bad boob. There are only three that I could see. They showed me on the scan. Three tiny specks that you need to zoom in very close to see. I can understand how the first radiologist missed it.

Three microscopic white specks that are suspicious. Could be scar tissue. Could be from radiotherapy. Could be nothing.

Could be the sign of precancerous activity.

Could be everything.

They wanted to do a second mammogram. Sometimes if the scan is really clear, they can tell from the shape and spread of the calcifications what they actually are. So they hooked me up to the machine again in that cold, cold room, but couldn’t be certain.

They did an ultrasound to check for lumps and bumps. Nothing. Good.

But they weren’t happy still so they hooked me back up to the mammogram machine. This time on my side lying down with a whole nurse purely to be kind, to keep me distracted. They anaethistised the boob, a sharp scratch.

Then the mammogram tells them exactly how deep to dig with their giant needle. They take five biopsies and are very happy to capture those tiny calcified cells. They’re very pleased, I can hear it in their voices. I’m just relieved I don’t have to have the giant needle punched in my body again.

The nurse presses on the wound for ten minutes to prevent bruising and stop the bleeding. I’m grateful for her and for the anaesthetic that is still working while she pushes down on me.

Now I’m very tired. The wound is healing but my body is so very tired. Two weeks until the results come back.

Two weeks.

I know this terrain. Scanxiety. I know how to cope. Oh but I’m tired of just coping. I was beginning to take time for granted a little. I didn’t plan ahead far. A year I thought, maybe three? I could start this sewing business. I could figure out how to get my family a secure home to live in. I could..

But we’re in different ‘could’ territory now. It could be nothing. It could be everything.

Two weeks.

 

Dear NHS Trust

Dear NHS Trust,

I had breast cancer and the NHS saved my life. So why am I writing a complaint?

I write because the NHS is my best shot to stay alive. I write because all the users of the NHS are its best shot at survival. We are interdependent. Much as the umbrella needs the hand of the person standing in the downpour.

I made it through treatment and it worked for me. But cancer doesn’t stay in the past. It doesn’t go quietly. At any moment I could feel that difference in my body. I could hear the words that ends worlds: “I’m afraid it’s come back.”

So I live with cancer, as I always will.

Every year until I hit the menopause and oestrogen is no longer my frenemy, my mechanical sentry is the mammogram machine. My body is manoeuvred and manipulated and examined with invisible light. I’m lucky to have it. I’m grateful for the gentleness of the nurse, her compassion for my scarred body. Thankful for the knowledge and certainty the machine delivers.

Usually it takes two weeks to receive that knowledge. It is a long two weeks but I’ve learned how to cope. I’m a pro at ‘scanxiety’. No longer do I lie prone on the sofa watching any images on the TV in order to just not think. To just not be in the world where horror and terror lie. No longer do I lay awake in bed every single night unable to escape now the dark has come and there is no more distraction.

Now I have meditation. And mindfulness. And acceptance of my own death. But knowledge and information are the pillars that my mental health is built on. So when I heard that my mammogram results would take eight weeks to be sent out to me, that support strut started to crack.

Luckily I have backups to lean on. One of those is my need and ability to write it out, to complain.

So hear my plea. Please find the radiographer to read those scans, the clinician to approve their deductions, the clerical assistant to write out the words.

Bring me knowledge. Shore up my foundations.

Thank you.

Complementary and alternative therapies for cancer 

Sadly friends and family have been telling me about loved ones who have been diagnosed with cancer. One of the first questions they ask is: “What alternative treatments are there?” Something to be precise about straight away is that there are ‘alternative’ and ‘complementary’ therapies out there. Alternatives mean replacing medical treatment and complementary means having it alongside what your doctor recommends. They can be entirely different to each other or overlap. I did traditional medical treatment and used quite a few complementary therapies too. The decision about your treatment is entirely your choice but I thought I would write something that might help it become an informed one as much as possible.

You just found out you have cancer. Your world has exploded into a billion tiny, sharp pieces. The doctor has given you a weighty pile of leaflets and booklets to digest as you leave the hospital in a daze. From wigs to lymphedema, chemotherapy to carcinoma, it’s a dizzying blur of information and action. Then you’re supposed to ‘help’ yourself by trawling through the miracle cures and wonder treatments offered by complementary and alternative practitioners. It’s a bit too much.

Or maybe having all this information, all this potential is helping you. It’s making you feel it’s not a done deal. It’s making you feel hope and taking action to help yourself is easing your anxieties.

We’re all different.

Just as our cancers are all different. Just as our treatments are and just as whatever reaction or action we take will be.

Whatever you chose to do next, I think the most important thing is what helps you reduce stress. Because stress is terrible for cancer and reducing it is a worthy goal right now. No problem, you’re only facing a deadly disease, right! Yes, this is the toughest challenge you will ever face. It will require every drop of stamina and resilience you can muster. You will have to put your own needs first. You will have to push open a space in your life for what you need to do. Your world and those around you will be reshaped in that image.

Massage, walking on the beach, acupuncture, counselling, yoga, dancing, sewing, stand-up comedy. The thing that brings you peace or joy is the best thing right now. Whatever works for you, and only you can answer that, will help you with what’s coming.

If you don’t know what works for you, it might help to try out a few things and see what does. When I was in treatment, I found that mindfulness meditation helped with those moments of emotion-killing depression, terror of dying and deep worry about loved ones being left behind. I used an app (yes, there’s an app for everything) called Buddhify2. It cost £1.99 and has a meditation for every situation. From waiting around for appointments to being in pain or coping with existential crisis, I found it incredibly helpful.

So you’re feeling relaxed now. Next best thing you can do for yourself is get some exercise and eat as healthy as you can manage. There’s no big complicated mystery or process about these things. They’re simple actions and don’t come wrapped in promises or big price tags. But after stress, a lack of exercise and good food are going to be your main issues. Both for helping slow down the cancer and coping with treatment, recovery and recurrence. I can not say this enough. If you were sporty before diagnosis, carry on. If you weren’t, like me, walk round the block or to the end of the street. If you can get to the beach, or into the garden, or to the forest where you can exercise the body and ease the mind, even better.

Build it up slowly, don’t rush it. Your energy levels will start to plummet once treatment begins so keep as active as you can cope with. Only you will know when you’ve done too much or too little. Some days during chemo, I had to ration how many times I went up and down the stairs. You will have those days. But on the other days, try to keep moving.

There are many, many diets out there that claim to cure cancer. There is no evidence for any of them. None. There is only evidence for a balanced, nutritious diet. Your hospital will most likely have a nutritionist on staff so it’s worth paying them a visit. You may not want to eat normally when you’re in chemo so find the healthiest version of what you can stomach. Some days all I could eat was rice. The important thing is to keeping feeding your body nutrients and not give it extra work to do. I stopped drinking alcohol and cut out sugar completely.

There is some good evidence linking obesity with cancers and one of the connections between the two is through insulin production. In fact some studies found that the diabetes drug Metformin, worked to reduce tumours. Cancers over-express insulin receptors. That means there are tiny little locks all over cancer cells that only insulin fits, like a key. This allows the cell to farm glucose and grow faster. So anything that makes insulin spike in your body is not good. But in the same way that all cancers are different, so too are the responses. This may not be an issue for you. I made the decision that it didn’t hurt me to give up sugar even if my cancer wasn’t tested for insulin receptors. There are lots of other health reasons to cut out sugar anyway.

In terms of all the ‘natural’ remedies out there, I only found a few with a hint of evidence behind them. One was cannabis to help with pain relief and nausea from chemotherapy. I took every anti-vomiting drug the doctor offered and none worked effectively. All chemotherapies are different though and you may react differently even to the same drugs I had. So nausea may not be an issue and the medicine the doctor gives you may work wonders. For me, I waited until my fourth cycle of chemo before I tried cannabis. I wish I hadn’t been too scared to try it sooner. I wish it was prescribed for me. It made the whole thing bearable and possibly prevented me from reducing my dose of chemo. A caveat though is that it is illegal to possess cannabis although highly unlikely the police would prosecute or arrest a cancer patient. But of course I’m not advocating you buy illegal drugs. It is possible to get an prescribed antiemetic called Nabilone from your doctor which is derived from cannabis.

Another bi-product of cannabis is CBD oil. I found some good studies on the efficacy of this. Although the studies were all done in a lab and they haven’t moved to full clinical trials, this was solid enough for me to give it a try. The potential benefits to me outweighed any side effects. CBD oil is legal in the UK and only illegal if it contains THC which is the psychoactive part of the cannabis it is derived from.

The last thing I found useful was curcumin. It’s the active part of turmeric. No amount of sprinkling turmeric in smoothies will cut it though. You need a high concentration. The one I use is the one tested in the most reliable study I found. It is pricey and the one big expense we decided upon. But again it’s not regarded as proven clinically. I made choices to take things I felt had the strongest evidence for and that did no harm.

There are others. Many, many others. I found no good evidence for any of them. Not even pre-clinical trials. But evidence is changing constantly and if it makes you feel better about taking action on your cancer and it does no harm and doesn’t bankrupt you, then why not. Even if it’s only the placebo effect at play, that is one powerful mama. So don’t discount it.

That said, some things do harm. Watch out for anything to do with apricot kernels or bitter almond. They produce cyanide in your body and one side effect is death. Some of the others like Gerson therapy, Black Cohosh and Chaparral have no evidence they work but can actually do serious damage. Antioxidants or high dose vitamins seem innocuous but can interfere with your medical treatment. Cannabis can also have an antioxidant effect so it’s a balancing act when deciding on using this. Definitely run everything by your doctor first and research thoroughly or rely on cancer charities who’ve got your back.

What I would definitely say is don’t reject traditional medical treatment. It has a proven track record. It has been tested and tested and tested again for safety and reliability. Treatment for cancer is brutal. It will be marathon after marathon of taking your body and mind to its limits and beyond. But it is your best chance.

Be wary of non-medical people who claim grand things for you. They rely on vulnerability, despair and equate anecdotes with evidence. Look for the studies, seek out the evidence from peer-reviewed journals like Nature, BMJ or The Lancet or aggregators like PubMed or Science Alert. Avoid Youtube at all costs. Be wary of sites like David Wolfe, GreenMedInfo, Dr Oz, Dr Mercola, Food Babe or Natural News. Anyone that claims their remedy is ‘better than chemo’ warrants a skeptical eye.

Make the best decision you can or ask someone you trust to help you find what you need. The cancer charities like MacMillan or Cancer Research UK have no vested interest in selling you anything. Trust them. There are good reliable resources out there. Use them. The ultimate choice about your life and treatment is yours to make. I would only say make sure you have all you need to make it an informed one. I wish you smooth treatment, manageable side effects and a peaceful mind. Good luck.

 

Notes:

Stress effects on the lymphatic system, encouraging cancer proliferation:

http://www.nature.com/articles/ncomms10634

Diet and exercise:

https://www.cancer.org/cancer/cancer-causes/diet-physical-activity/diet-and-physical-activity.html

Obesity, insulin and cancer:

http://www.nature.com/cddis/journal/v6/n12/full/cddis2015381a.html

Cannabis to treat nausea:

https://www.cancer.org/treatment/treatments-and-side-effects/complementary-and-alternative-medicine/marijuana-and-cancer.html

Honest look at CBD oil:

http://scienceblog.cancerresearchuk.org/2012/07/25/cannabis-cannabinoids-and-cancer-the-evidence-so-far/#can-treat

Honest look at curcumin:

http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/can-turmeric-prevent-bowel-cancer

Complementary and Alternative Therapies at a glance (Cancer research UK):

http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/complementary-alternative/therapies/

MacMillan’s list:

http://www.macmillan.org.uk/information-and-support/coping/complementary-therapies

 

Hope and despair

I’ve been struggling of late. I’ve had whole days of tears, hours of anger and precious few minutes of laughter. I haven’t been taking care of myself. I missed many weeks of exercise class. I didn’t do the pilates I learned. I haven’t been eating as well or drinking as much water.

I forgot to be mindful, so I didn’t spot the creep of despair. It took hold of me inch by inch, like the air bubbles that gathered on my neglected glasses of water.

Each failure of self-care led to another, and another.

I blame Brexit.

I stayed up all night watching as the UK voted to leave the European Union six weeks ago. I was transfixed by coverage as what felt akin to a natural disaster played out on the screen. Almost immediately the hate crimes began. Still sleep deprived and dazed, an abstract but powerful sense of threat invaded. Where my Iranian-ness had previously been intriguing or exoticised by other Brits, (“Oh you have lovely skin, bet you tan well.”) suddenly I started to feel like little targets were painted all over my face.

I went into full fight or flight mode.

The great thing about fight or flight is that it’s really rather handy when you need to run or punch. For longer, more sustained levels of threat it’s not so great. The cortisol and adrenalin released by your brain to prepare your body are really bad for you over time. This was something I experienced just after my cancer diagnosis.

Then ding, ping or whatever realisation sound works for you, happened. I had felt like this after diagnosis. Cancer was Brexit. Brexit was cancer.

Brexit, as with cancer, represented an existential threat that felt quite abstract at the point of diagnosis (or referendum night). I never felt sick from cancer itself. It would eventually have made me sick, mostly from growing into organs and obstructing their function rather than inherently being a problem itself.

As with Brexit, it was the effect of emboldening racist ideas and behaviour that was the primary source of pain for me. The visceral threat of violence done to me, my family, my friends or any other human.

When I received my cancer diagnosis, after the shock settled, fight or flight pushed itself forward as an option. I welcomed it at first. People told me that I could ‘beat it’, newspaper articles shouted when a celebrity died after a ‘battle with cancer.’ Many of the voices around me were saying fight. Please fight. And my hormonal messengers were reflecting that back. The adrenalin kicked in, the cortisol was flowing. Exactly the same way I felt inside and out the days after Brexit.

Pretty quickly I realised that fight or flight was not going to be my friend for the long, relentless treatments I was facing for cancer. Chemotherapy is a marathon requiring pacing, stamina and humility. And lots and lots of help. In fact it requires the very opposite of fight or flight. So I switched to ‘positive thinking’. There was lots of evidence to show this kind of approach worked well for reducing stress and improving outcomes.

But it switched me off from the world. I had to stop listening to the news, to stop engaging with people’s problems. Shamefully it stopped me connecting with people with secondary breast cancer because their reality didn’t fit with my visualisations for survival. I wasn’t in fight mode but I was deep on the flip side. I was immersed in flight.

The process with Brexit went the same way. I eventually switched off the news and tuned into French radio stations where I could only understand one in five words. ‘Brexit’ sounds kinder with a French accent. I unfollowed all the political facebook groups I’d frantically joined in the days after the vote. I started sewing furiously, determined to create something beautiful or useful in this world. I filled in my Irish passport application. Deep, deep in the comforts of flight.

Then I splashed myself with hot oil. Yanking my arm away reflexively, I nearly vomited from the pain when the tiny movement did a grand impersonation of a dislocation of my shoulder. It was the side of my body operated on, where parts had been removed. This was a warning I’d been ignoring for weeks. The lack of exercise, the neglected pilates, the stress and tension of muscles flooded with adrenalin. It all added up to pain. Here my life with cancer and Brexit collided and smashed in the blinding agony of my injured body.

The pain must have jolted something loose in my brain and I made the connection between cancer and Brexit. I would need urgently to return to my cancer coping strategies. It’d proven itself. It had done the job. Maybe it could help with life after cancer too.

What was it? In one word: acceptance. It’s a small set of letters for a very big thing. It’s a hard thing. Like radical generosity or self-care, it’s tough and difficult. It doesn’t come easy and it doesn’t come instinctively. It’s not ‘acquiescence’ though. It’s not giving up. In fact when I let go of positivity, of hope, of flight, I also let go of despair. Because those two things are flips of the same coin and it’s exhausting to lurch from one to the other. I needed to get off that track, board a different train.

When I was alone, just me, in reverse quarantine from the world of bugs and germs during chemo. Truly and deeply isolated, I faced my death. I stared it in the face and then looked back at myself. I stripped back the thin skin of positivity and went deep into the innards within, into the mess of terror and panic. I managed to untangle some of the guts of fear.

An unexpected side effect of that letting go was it freed me up to do the things that would, ironically, help me lower my risk of the cancer returning. With the clarity and energy that comes from not being terrified, I found room for solutions. I lost weight, ate healthier food, lowered stress, did exercise.

Shifting from fight or flight took me out of binaries and allowed me to see what was really there. The complexities, what exists, where the problems lie and what the solutions could be.

I don’t think I’ve mastered this fully. The warrior in me has been around for a long time and history is its ally. But I need to go deeper into the real, to see all that is there not just the information selected by hormones. I need to apply what I learned when I thought I might die.

So be it Brexit or cancer, the world is as it is. I strive to see it. All of it. Then maybe I can find the room to change it.

Rooms

I heard a part of a poem today that yelled out for attention and in the seconds the words were read, I was transported in memory and feeling.

“I remember rooms that have had their part

    In the steady slowing down of the heart.”

The words pushed me into the ‘comfy’ room of my diagnosis. The room with the plush yet hygienic seats and Ikea art on the walls. The room with the nervous student doctor, breast care nurse and surgeon who told me gently, “I’m afraid it is cancer.” The room where I lost my delusional certainty that everything would be alright and that I would live forever. The room where time and space expanded and my heart did indeed seem to slow.

When I heard these lines of the poem ‘Rooms’ I urgently Googled it to find the author, Charlotte Mew. The poem is about being rebuffed and the heart slowing down is likely a reference to the rejection of love. It’s not about cancer. But that isn’t the point. There’s a human feeling she captured that connected me to her.  Quite suddenly the people I cared about expanded to include a Victorian woman who killed herself with Lysol 44 years before I was born. All it took was sixteen words.

I felt compelled to share my experience because this past week has felt like we as human beings are more distant from each other than ever. That separation ended bloody. I fear that the coming weeks will push us further apart and the world will get uglier in increments.

But today I was reminded by a dead stranger from an unknowable past that human experiences can be shared. Those shared experiences can bridge difference, bond us, connect us in time and space. She showed me that intimacy and understanding can smash open our idea of who we love, break bread with, who we cry and laugh with, who we welcome into our tribe.

I want to trump my fears and expand that tribe.

I want to stay intimate. I don’t want us to be separate from each other.

Charlotte Mew wrote ‘Rooms’ about a lack of love. She lived in a time and place when her love was not accepted, when her very being as a gay woman was rejected. It doesn’t make a jot of difference to her sadness that so many years later, I shed tears for her loss. That I care deeply about the cruelties inflicted on her. It will make a difference that those tears count in this time and in this place.

I strive now for love. I struggle now for understanding. Come into my room where the heart speeds and races and is eagerly waiting to be shared.

 

There’s nothing to see here..

I just got back from seeing my GP. I got the fastest appointment ever. Slipping the word ‘cancer’ to the receptionist still gets me access to the medical equivalent of speedy boarding. I went to see her because I’ve been worried about something. I don’t want to call it a ‘lump’, more like a weird protrusion on my left ribcage. The oncologist looked at it a few weeks ago but she didn’t think it was cancer so that was the end of it for her.

It wasn’t going away though and when I exercised, it ached. Even though the oncologist had reassured me, it still didn’t feel right. So I got my top off (again) for my GP and she had a good feel of my pelvis, spine and ribs. A new area of feeliness from doctors.

After a bit of prodding, she told me that I have a tilted pelvis and slightly S-shaped spine. She had an ‘A-ha’ moment when I told her I’d slept exclusively on my left side for six months after surgery made it too ouchie to lie on my right.

She prescribed sleeping alternately on each side and going to pilates. I feel very relieved it’s something fixable but it also laid out bare that there’s still some cancer mess to clean up.

By strange life coincidence I also got a phone call from the PALS people today saying that they were pressing forward with a formal complaint I made about my encounter with the consultant. He’ll be informed by his superiors and I hope he gets the support he needs to make some changes in his ‘style’.

Today was all about the contrasts between the different care that doctors can give. One that works, the other that doesn’t. But the most important thing I learned today was that I can trust my instincts as my body’s monitor. Getting that balance between vigilance and anxiety is a delicate one. So far I think I’m doing alright at it.

Dear Doctor: Round two

Dear Doctor,

I booked with someone else today because I didn’t want to see you. The way you treated me last time we met left me uneasy in your care, blocked the trust that’s vital when putting your life in the power of another.

It was my final check up appointment and I had a worry I wanted expert eyes on. I felt a weirdness, an otherness in my ribcage I hadn’t noticed before. The doctor I replaced you with listened carefully to that worry. She said ok, let’s take a look. She pressed gently and firmly, feeling the weirdness. She pressed gently and firmly in all my other weird places, the hollow armpits bereft of their nodes. The lumpy boob with stitches covered in new skin.

She asked permission for every push of her hands. She showed me just how to hold my hands when searching, to be my own body’s sentry. She reassured me that the weird was normal. My ribcage was just my own. But she didn’t have an answer to one of my questions, so she left to find out. Without knowing, she let me down then because she found her answer with you.

You insisted on coming into the room, to see me yourself. What had been a safe space suddenly shifted to a battleground. I wasn’t prepared, I wasn’t ready. I hadn’t squared my shoulders back to project confidence or crossed my arms to defend my body. I was relaxed and happy. You came and you told me you wanted to examine the ‘tightness’ under my arm. I was confused and still in shock at the changing experience.

I had some problems with my arm but I was solving them myself. I was fixing it. I didn’t need you. But you insisted and you moved fast and I was still not caught up with the fact that you were there in the first place. So I did what you said. I undressed, further exposing myself to you. You poked and you prodded and you snapped my stiffened tissue back to normal. It hurt and I yelled and I told you it hurt. You didn’t stop and you didn’t ask permission.

You didn’t ask permission.

You left quickly after giving me some information I didn’t hear and don’t remember.

Afterwards I cried in the room that used to be safe. The other doctor was shocked and sorry. I felt her regret and it added to my own that I hadn’t challenged you. Neither of us had, so you probably feel confident you helped. That you did something I wanted. She asked me if she could tell you I was upset. I said yes because that’s the only power I had in that moment.

I felt angry with you, but mostly with myself. I had let this happen again. I didn’t stop you, I didn’t tell you off.

Then the tears of guilt and shame cracked and cleared. A powerful clarity came and I remembered the truth. You did this to me and I will not be the one held up for scrutiny or accountability. But I will do everything I can to stop you doing it again.

So I say it clear and loud. You do not have authority over my body. I do. Get my consent.

Yours, the patient.

Chemo kit innit

A friend just asked me what was most useful during chemo because she wanted to send something helpful to a recently diagnosed friend. It’s a question that has come up too many times, sadly. Not trusting my brain to recall anything that long ago, I googled ‘Chemo Kit’. The results were a mixed bunch, perhaps compiled by office-bound medical staff or well intentioned religious folk. So I thought I’d get the coffee on and concentrate really hard and see what I could remember.

What works for one may not work for all, but some things might hit the slightly nauseous bullseye. The amount of information you get at the beginning is overwhelming but I know it was annoying to find out things that could have been helpful AFTER it was all over.

People may do chemo at the start or at the end, depending on their treatment plan. I have reliably forgotten some things so I’m making this a community operation. Please feel very free to add suggestions, especially my lovely ‘breasties’ out there who have had their own experiences and strategies.

Chemo Kit:

Warm bedsocks
Magicool (for chemo flushes)
Sucky sweets for nausea (sugar free)
Sleep hats
Pretty scarves for headwear (if the person is into doing that)
Sunglasses
Wide brimmed sunhat that’s not too scratchy on a baldy head
Sensitive skin suncream
Earplugs
Hat that covers ears and bottom of the head
Easy going books (not meaningless but not too emotional)
Cancer cookbook (sometimes the hospital will have their own but you have to hunt for them)
Unscented Hand sanitiser in lots of different forms (especially one that is automatic for home use)
Boxsets of comedy shows or Netflix subscription
Comfortable and safe/secure slippers
Warm and cosy wrap/cardigan
Little lap blanket
Super soft toothbrush
Corsodyl toothpaste/mouthwash (only use when gums are bleeding as prolonged use will turn your teeth grey!)
Pitrok (natural deodorant because you can’t use the chemical stuff)
Natural, scent free bar of soap
Lipsourcil Expert mascara (if you’re feeling flush, this MIGHT help with preventing eyebrow/lash loss)
Ice lollies (for nausea)
Pocket tissues (the hairs in your nose will fall out too and that means there’s nothing standing in the way of those drips)
Pillbox for medication
Soft neck scarf (to counter drafts)
Comfortable headphones
Tablet/iPad (if you have a ton of cash)

‘Surgery kit’, ‘Hospital stay kit’ and ‘Radiotherapy kit’ in the works..

Out with the old..

The nurse just left. She won’t be back. As I hugged her goodbye, I half jokingly said “Hopefully, I’ll never see you again!” This was my last Herceptin injection. The last of 18 five minute long injections. The last time the drug burns its way through my tissue, causing a sharp intake of breath for the first 30 seconds. The last time it has the potential to stop my heart.

But it’s also the final batch of the wonder drug circulating in my body, restricting the growth of any cancer cells still in me. It’s the final withdrawal of medical services that have structured and shaped my life for the past year. I may never see those wonderful, kind, interesting and caring nurses that have sat with me and chatted for two hours on every visit.

So it’s with mixed feelings that I approach today. There is some evidence that only 9 cycles of Herceptin are actually necessary and as effective. I feel reassured by that. Even if I carried on having the drug every week. Even if my heart could take it, it wouldn’t make any difference to what the future brings. This is what my confusion is all about: the future.

Cancer has a dual nature. It is in one sense a chance set of 5/6 mutations that leads to a perfect storm of change to the cells. It takes 15-20 years to accumulate those mutations and cooperation from surrounding cells to produce a cancer. It’s a genetic disease. Something sporadic yet seemingly irrepressible. Something I can’t really influence. At the same time there are ‘risk factors’ for each type of cancer. So outside things can make the conditions just right for a mutation to be more likely. The biological Goldilocks moment but with less friendly bears.

Not everyone who is exposed to those risks gets cancer though. So at that point there is some level of unluckiness. The Herceptin injections represent to me the chance factor. The drug is working on what’s already there, what I can’t do much about. Lightning has already struck. So it makes me nervous that it’s gone.

On the other side, I went to weigh myself and then off to circuit training this morning. I’ve lost another 1.3 kilos and I felt so strong during the exercise class. This is the risk factor stuff. My cancer is oestrogen positive and fat produces oestrogen so, the fat has to go.

Today was about the two sides of the cancer coin. I will have to learn to live with the randomness. The lack of control. At least there is something I can do though. At least I can do the things I need to do to get myself in or out of the cancer lottery in the first place.

For now, I say thank you and goodbye to the incredible nurses who have supported me for the last year. I wanted to bake them cakes but I’ve become too much of a health nut to ethically thrust love-laden sugary treats on them. Instead I made them funky tablet covers. Another sign of a new life and a shiny new skill to keep me happy and reduce another risk factor: the devil of stress. So it seems those lovely nurses continue to help me, even when they’re not around.

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