Me: Do you know what today is?
Me: It’s exactly one year since you took me to me to get pissed in a gin bar in Birmingham.
One year ago today I received my breast cancer diagnosis. I thought my world had ended. One year on it is a very different place but it is still a world filled with joy and love. Cancer may have replaced my magnificent bosom with a strangely twitching half boobsicle (for now) but it has not dimmed the brilliance with which my world shines. So I enter my second post cancer year, one and half boobs to the fore, and stride on confidently, knowing that exciting things await me in 2017.
No not me, sillies! Been there, done that, have no need for razors. Except for my legs which continue to sprout undergrowth. Rude. No. This is about a fab all round bloke who just happens to be a friend of mine. He has very gallantly signed up to Macmillan’s Brave the Shave initiative. I am delighted my new look is inspiring imitation, which is of course, the sincerest form of flattery.
Let me introduce the amazing Adam Gompertz:
Adam is a petrol head, a blogger, a vicar, a whisky drinker, a talented artist and a bloke who is kind and makes me laugh. He also has a top quality wife who is more #wonderwomaninacassock than human.
So his locks are going. I am assuming the facial growth is also going but this has yet to be confirmed. Please consider sponsoring him to do this. Macmillan is an organisation very dear to my heart. Their support during my Dad’s last days was immeasurable and I have found myself the recipient of their knowledge and care during my own cancer experience. I am so grateful to people like Adam who are doing this sort of thing. Incidentally, while beating the fundraising drum, my best mate is hosting one of Breast Cancer Care’s Strawberry Tea Parties in a few weeks time so huge thanks to her too. Without Breast Cancer Care, who I rely on daily, this whole thing would have been much harder. If anyone local also fancies doing this I would be happy to donate some jam.
Anyway, to the important bit. To sponsor Adam, go to his Macmillan page here: https://bravetheshave.org.uk/shavers/adam-gompertz/ And all should be self explanatory. Thank you.
It began with Twitter. And a hashtag. I flirt with Twitter. I am not a great tweeter but I do like to dabble (@wildsidejam if you are interested). On one such dabbling, I noticed Cancer Research were running a campaign. What did cancer mean to me right now? Or #CancerRightNow. So I told them. I had just done a collage of different head looks. I thought they might like it. They did. Quite a lot.
My original tweet got their attention and landed in the #CancerRightNow gallery. Which is a bit like the Vision On Gallery. Only without the music. Or Tony Hart. I then had some lovely email correspondence asking if they could further use my photo and information on other social media platforms. Being the shy, retiring type, I hesitated for about five seconds before agreeing. So last Monday I was the subject of Cancer Research UK’s twitter feed, resulting in 185 likes and 44 retweets.
Then on Saturday we did it all again, this time on Facebook:
Somewhat shockingly, that has resulted in 1.4k likes, 116 comments and 70 shares to date. In under 24 hours. Which is the closest thing to going viral I am ever likely to get.
There is a possibility that the world of Instagram may be hit by my mug shots this coming Thursday. You have been warned.
That Cancer Research wanted to use me is rather flattering. That so many people took time to comment, like, share or retweet is also rather lovely. I hope it helps to raise awareness for the splendid work that Cancer Research do. Other than that, I am not really sure what to make of my 2 minutes of fame.
I have quite a thing for words. Always have had. Ever since I was a little girl when I would have words that I would say just to myself because I liked the sound of them and the feel of them in my mouth. I still talk to myself, although less often in public, but my love of words now is more about the language we use both verbally and written.
While I realise this is not true for everyone, I have long been disturbed by the language of cancer. This predates my own diagnosis. It predates my father’s. I first became aware of it as a nurse in the 1980s. The terminology is frequently filled with bloodthirsty violent imagery: battles are fought, diseases are beaten, patients are brave hero warriors, those who die have lost their battle, those who recover are conquerors or survivors.
Let me say for the record that I am none of these things. And I do not want this language to be associated with me or my illness. If I live, and my prognosis is good, then I will not be a survivor. That implies I am defined by this experience and I refuse to allow cancer to do that to me. Nor will I have fought a great battle and won triumphant. I will have simply been fortunate enough to have a variety of cancer that responded well to the treatment given to it and was picked up early enough for that treatment to be most effective.
Equally, if I die, no one, and I repeat No One must suggest that I have lost my fight against cancer. The outcome of this is not in my hands. All I can do is rock up, take my meds, plough my way through as best I can. It does not make me brave. It does not make me a warrior. It does not make me a hero. It makes me compliant. All those other words imply choice. Someone who lays down their life for another is brave. A daring rescue at great personal risk is an heroic act. And, of course, a warrior is someone who chooses to fight. I did not choose cancer.
By using such language, we unwittingly distance ourselves from what is going on. If someone is a hero then they are extraordinary. Surely that in itself means cancer is less likely to happen to the ordinary? If someone loses a battle, then it must be their fault for not fighting hard enough? I think most of the problem lies in the knowledge that cancer is still such a difficult disease to treat in the 21st century. And none of us really know what to say. So we resort to easy cliché without thinking it through. I know I have been guilty of gross crassness in the past and will no doubt be so again in the future. Having now been on the receiving end of some choice comments, I can also say it is better to say anything than nothing. Avoiding the subject altogether is, perhaps, the very worst thing one can do. But please, do try to leave the fighting talk to the military? They deserve it so much more than me.
Being ill does things to a person’s head. The insides and the outsides do not match up. On the whole this is a good thing. The insides of my head are pretty messy. I lose things in there. But we all like to think we are generally ok. As in nice. Don’t we?
I cannot be alone in believing that when adversity came calling I would greet it like the heroine of a Victorian moral drama. I would be a Dorothea Brooke or a Jane Eyre. And when I fantasized about funerals and mortal illnesses, people would always admire the stoicism with which I conducted myself. My general deportment would obviously have something of the oppressed about it, but my inner bearing would overwhelmingly convey fortitude.
I do not recall ever thinking I would turn into a cow. That I would be reduced to snapping at my dearest friends; being a bitch to my husband; and generally turning into the Bridezilla of cancer to all around. Cancer has robbed me of my ability to function beyond a hand to mouth existence. In my need to focus on surviving, it is easy to forget common decency and manners. And the very people I love above all others get caught in the cross fire.
Being ill does not excuse this. It is acceptable to be exhausted. It is acceptable to struggle to function outside my bubble. It is acceptable to not cope. But it is not acceptable to take out my anger and frustration on those around me. The really horrible thing is, I would love to promise to be the Florence Dombey of chemotherapy but that is not going to happen. I am not going to morph into some angelic being who bears all with grace and serenity. I suspect I am going to be foul and loathsome.
Be nice to the Captain. He is going to need it.
You do not have to know me very well to know that I enjoy cooking. I run a food company for goodness sake! Prior to being diagnosed with cancer, I had only ever lost my appetite once when a cold removed my sense of taste for a few days. It is reasonable to say that I love food and all things relating to it. So the prospect of the FEC-ing chemo interfering with that is not a happy one.
I think everyone associates chemo with nausea and vomiting. I know the medical staff load you up with anti-emetics so I am hoping this will not be too bad. Following on my puke-tastic time after surgery I have been promised Emend, a top notch drug. Only time will tell if it works, but I am hopeful. However, there are other prospects. Sore mouth, bleeding gums, metallic taste, and all sorts of other delights. With this in mind, the Captain bought me The Royal Marsden Cancer Cookery Book. It is lovely. All sorts of delightful recipes with a grid listing which are suitable for particular symptoms. So for a sore mouth, one might be tempted by a Blueberry & Avocado Smoothie or Pea & Pancetta Risotto. For nausea, there’s Green Tea & Peach ice lollies or Elderflower Jelly. While still on the mouth theme, how about Cinnamon French Toast with Apple & Blackberry Compôte or Mongolian Stew for changes in taste? All sounds a bit delicious to me.
I have begun to fill the freezer with such goodies in order to have some things on hand when required. Inevitably the recipes have had a little tampering. I am not used to cooking while having painted nails so the Celeriac, Lemongrass & Lime Soup with Nail Varnish Chippings should be interesting. When I have done a few cycles, I will try to reflect on which recipes I found most helpful.
Today has loomed large on my calendar for some time. For some time, that is, in the weird and wacky elasticky time conundrum that has clouded my head since cancer came to call. In the normal world, I think I have only had this appointment for an unbelievable two and half weeks. In my cancer infested world that two and half weeks is more like several months. Time has become decidedly odd. It is not my friend. Anyway. The appointment in question was my first date on the chemo unit. I got to turn up, be shown around and have a ‘little chat’ with one of the nurses. Note to self: do not use phrases like ‘little chat’ in connection with major life incidents. Ever.
The unit is unexciting. It consists of several individual bays mainly with large chairs although one or two had beds. There is a kitchen for our use and I was encouraged to bring in drinks or snacks/food in with me. Before I can have any chemo, I have to have blood taken each time. This needs to happen 24 – 48 hours beforehand so a double trip to the hospital is in order. On the upside, they offer two for one car parking, or buy one get one free. Not as in parking a second car for free. Rather, the second trip is the freebie. So the Captain and I will not be travelling in convoy.
Once the bloods are done, the drugs are made up and the cocktail will be administered via a peripheral line. Hopefully. Historically I have not had the best of veins. They assure me they will be fine. Some units use various sorts of permanent access lines (PICC / Hickman) but here, they stick to the more usual cannula unless there are problems. The list of side effects was gone through in some detail, and a folder full of information was handed over which I will duly digest at some point. It is very sobering hearing all the gruesome possibilities. One could even say that it does not look like it is going to be a barrel load of fun. I found myself zoning out at various points. I think sitting in the unit, hearing all the horrific possibilities, made me want to absent myself anyway I could. I do not think I missed much. All of it has been given to me in written form anyway. Just in case. One might think they had come across this issue before.
Friday’s appointment with the Citizen’s Advice Bureau (CAB) turned out to be marvellous. I was extremely sceptical beforehand. I knew that Macmillan offered grants for people in certain circumstances, and I also knew I did not qualify. I was not aware that anything else was available but figured it would not hurt to go and see.
Since cancer came along to bugger up our plans, we have taken something of a financial hit. My business is not lucrative, but we were anticipating being able to rely on my income while the Captain was on his unpaid sabbatical. We do have savings but had hoped they would last longer than they currently look like doing. Especially given that cancer is proving to be hideously expensive. It is shocking the number of extras that are needed.
The CAB woman was incredibly helpful. Both the Captain and I had wrongly assumed that because I am self-employed I do not get sick pay. After all, I am not earning, so how can I pay myself? However, because I pay Class 2 National Insurance contributions, it looks like I will qualify for Contribution based Employment Support Allowance for the duration of the period I am unable to work for. Applications are being filled out and will be sent in forthwith. If my claim is successful, then my payments will be backdated to the 1st March. What a difference that will make, hurrah!
I am beginning to marvel at anyone with cancer who manages to hold down a job. Since this all began, it became obvious early on that we were going to have to put my business on hold for the year. Or at least, manage a very scaled down version. As you know, the Captain has been taking jam making lessons. Today he moved onto chutney. With some success I might add.
However, even if I wanted to, I would struggle to fit in working. During the next 7 days I have the following appointments:
- Oncoplastic Surgeon, follow up
- Pre chemo dental check up
- Citizens Advice Bureau cancer appt – not entirely sure why I’ve got this, will report back
- Pre Chemo talk
- Wig Fitting
- Complimentary Therapy Reflexology
- Presentation on breast reconstruction – optional extra. I was invited as my surgeon is speaking.
It is exhausting. Apart from the reflexology. Last session I fell asleep. ‘You relaxed really well,’ said the therapist. Understatement of the year. I probably snored.
Today I am angry. I think I am allowed to be.
This summer, the Captain and I had plans. For some years we had been looking forward to a time when could move onto our narrowboat and travel the canals for six months of the year. We have been slowly moving towards that goal. We sold our family home last year and moved into a much smaller, more easily manageable property. We refitted our boat. We adapted my jam making business to suit a more prolonged life aboard. We adjusted our finances. The Captain began to adapt work, initially taking a six month sabbatical with a view to retirement in April 2017. We were good to go.
And then this happened. And the whole Cancer Circus came to town.
On most days I am rational about this. Sanguine even. I am delighted that the Captain does not have to juggle work with his need to be with me and my need for him to be here. But today I am not rational. I am not sanguine. I am not delighted either. I am bloody angry that our plans have been trashed. This has happened time and again. And it is not fair. Not even a little bit.
I know that our plans will keep. I know that we should be able to continue with them next year. I know that were it not for modern medicine, my chances of doing them for many years would be seriously in doubt. But from now on, I will always have a sword of Damocles hanging over my head. Once a cancer patient, always a cancer patient, as they say. I can choose to ignore it. I can choose to live with it. I can choose to embrace it. But it will always be there.
And I am angry about that too.