I don't think the few months of waiting will make any difference in the end, this cancer has been growing for quite some time and ironically I got my 3 year call up papers yesterday to have a mammogram, I've never missed one of these so during the three year gap my tumour has grown to nearly 4cm and spread to my lymph nodes.
Maybe we need these yearly eh? So my treatment plan is to shrink the tumour over four sessions or so of chemo, then remove the reduced lump and so on, with the hope to preserve the breast, that's the plan.
The few months of waiting to get to start treatment have in a way been useful. We cancelled our previously arranged wedding (which would have been on my first day of chemo as it turns out - Valentines Day) and got a registrar to rush us a ceremony with a party after for half a dozen friends and so I could hang out for a few days with old mates before I started to get side effects of chemo.
During this time, planning that small wedding, reading up about what to expect with chemo and preparing my 'chemo kit' has distracted us a fair bit and in between we go on long drives exploring the coast, walking on the beach and hanging out with new friends and neighbours. My 'chemo kit' if you are interested consists of the following ; Blanket, big shawl wrap, stretchy track suit bottoms, cashmere socks, short sleeve t-shirts, cashmere jumpers and hats. Toiletries - lots of extra gentle non chemical shampoos, conditioners and de-tanglers so my hair doesn't get any damage while I'm using the Paxman scalp cooling cold caps to retain my hair during chemo. Other essentials, mouth care, top priority, it gets dry and sore so very soft biodegradable toothbrushes, special dry mouth mouthwash, lozenges to suck which increase saliva. I need to get more skin care moisturisers without perfume next as my face is burning after yesterdays round of chemo and cold cap. I'm putting on dark nail varnish because I read that might help to keep your nails from falling off (who knew that could happen, not me).
Food wise we are back on the nutribullet for morning smoothies packed full of nutrition and eating as healthy as can be but your panic tends to drive you to either not have an appetite or to comfort eat, and we seem to have gone for the second option of indulging in a few treats here and there. The increased anxiety since diagnosis day has rendered me exhausted and the 'head stuff' has made me feel very ill, while the cancer tumour is hardly noticeable. Weirdly I haven't felt good in a long while, having back pain almost every day and headaches, I and the doctors put this down to the menopause but something is nagging at me now, that my body was trying to tell me something, it was trying to tell me that my cells were being naughty and doing things they weren't supposed to, so diagnosis had also put into place something I was subconsciously feeling for the last 18 months.
So, let's look at the mental process since diagnosis. Firstly, there is only one cancer case you need to know about, and that's your own. My advice, is don't google (great advice from a blogger). Read the UK macmillan site and don't take too much notice of what happens elsewhere like the USA as it's not going to be much help other than make you question the treatment you are being given or offered. There are about nine types of breast cancer so even your mate or her friend are likely to have something different to you so their treatment plan will be different and their side effects will be different and the way they deal with it will be different. Some women are ok about loosing their hair, others aren't and so don't feel pressured into taking on a look that isn't you. Personally I don't want to look any different at all and hope that if weight is gained then I've got an excuse but won't be totally happy about it but if my body wants to rest then I'm not forcing myself to jog around the garden and I'll just have to buy bigger stretchy pants.
I've started to realise that from confirmation of having cancer it's the same as when someone close to you dies. Hell, this person is very close to you, it's you ! Yes you heard the C word, you are now officially a statistic of over 55,000 in the uk. There's also a statistic for how many women die and a percentage of your survival rate. My percentage at 'stage three' is reasonably high considering it's spread to the lymph nodes (these are the little gates that catch the cancer cells and try to stop them going into the rest of your body) but that nagging devil on my shoulder is reminding me of the 20% who don't make it through. Even looking up the statistic for this post has given me a sick feeling in my stomach, I don't think it's necessarily helpful to know this stuff, like it's not really helpful to compare your treatment to someone else's, it can nag away at your confidence in facing it.
It's a shame we have to 'lump' all cancer sufferers into the same category because the very word just freaks you the fuck out. It's your cells deciding to multiply in an abnormal way. So you got your nine different types of breast cancer, but then you've got the positioning of it in your body, whether it's spread, and what your lifestyle and family history has done to contribute. My point here being, again, it's only your own cancer that matters and then you need to look at how to get through the treatment plan you are given and get in the zone for that. Cancel work and commitments if you can. Chemo takes away your immune system to it's best if you can position yourself to not have contact with too many people as you can't fight infections. If you can take a year off and say, this year I just get on with sorting out the chemicals and cells in my body and that's all I'm doing. I'm incredibly fortunate that my income isn't reliant on meeting people or leaving the house or coming into contact with children etc. Get along to your local cancer advice centre and find out what benefits you are entitled to, they won't be offered you need to kick butt and seek it out. You should be receiving free prescriptions - get yourself some good gastro-resistant capsules like Omeprazole, maybe something for your nerves like Diazepam and the hospital will give you anti sickness when you got to get your chemo.
Here's where I want to go now .... I've given you my coping mechanisms rough guide but there's more I need to say and it's about anxiety, mental health and how to communicate with someone who has been told they have cancer.
How to tell people, whether to make it known or keep it secret that's all up to you, but if your support network has been built up around social media, like mine has, then you probably are going to announce it on facebook or instagram at some point. The exhaustion of repeating your story becomes a bit too much to do it all one to one and for the first few weeks I could hardly pick up my phone and read and I definitely couldn't speak to anyone. Brain overload, burnt me out to a zombie, my Ian was the same. I couldn't sleep so the days and nights got more tiresome and long with the worry of whether it had spread to the rest of my body or not, how long did I have, and all our plans for the new house and business gone completely out the window.
I'm sincerely hoping not to offend anyone now but I really feel I need to say a couple of things. Firstly when you've been diagnosed your brain goes into overload, well it did for me and a few people I also know who have been recently dealing with it. We all have our own belief systems, whether it is God, Buddah, witchcraft, homeopathy, acupuncture .... and in times of crises this is where you will turn, but it's not necessarily going to be where someone else will turn. I truly appreciate the prayers, the spells and stuff because I really really want them to work, don't get me wrong, but these are not things I practise myself. Over my 60 years on the planet I have had a huge open mind for alternatives to modern medicine. I've tried A LOT of stuff and spent a fortune along with it. I've had every imaginable treatment going, acupuncture, osteopaths, beauticians, taking vitamins, taking chia seeds, trying turmeric drinks, this diet that diet you name it I've tried it. My personal conclusion ... most of it either didn't work or just made me feel worse. If it works for you then that's brilliant, but none of this works for me and I'm not risking my life or making it miserable by spending every minute of every day loading up on apricot kernel, cold baths, cutting out coffee and sugar, not using a mobile phone. My husband doesn't even want me to be here doing this, on a laptop, so even we can't agree on what I should and shouldn't do. One of the more effective things that I have tried because it fits into my belief system is cannabis oil, legal in this country without the thc (the bit that gets you high) it still works for anxiety to a certain extent and it's made from natural ingredients so probably can't do any harm.
There's just too much information out there and when you are in a life threatening situation the last thing you need is to hear about is something someone has read on the internet about cures for cancer. There's too much stuff to sift through and even if you do hear about that man in America who has this clinic .. are you really going to go there and pay for that or is it just going to make you feel shit because you can't go there and pay for that.
I guess the point I'm trying to make is that due to the internet and whatever, we are overloaded I mean really overloaded with suggestions about what worked for other people. But these things are important to those people because that is their coping mechanism but you need to find your own coping mechanism and just stick to that and if you are an intelligent open minded person you will pretty much already have that in place. It's hard to decide if hearing about what works for other people is useful or not, it's another scrap of information that you have to absorb and then dismiss because you just don't have room in your brain box for any more.
Now I suppose I need to talk about 'positive' ... You will notice that I haven't used this word at all so far, and that's because I hate this word. To me this word is an order, a demand and instruction to be happy, up, to be totally convinced that you are going to survive and beat the adversity. It's bandied about as a catch all buzz word but when I hear it now, it's just want to scream.
There's a couple of things going on here, one - I over analyse every word said to me, I take offence where none was intended and I put this down to my mental health. It's taken me ten years to work out how anxiety affects me and I think that theres probably ten blog posts about anxiety if truth be told, but I'm going to try and give the shortened version if I can.
Firstly we all have anxiety, and certainly when you hear a diagnosis for cancer you will be anxious. It's our bodies 'fight or flight' mechanism from when we were running away from dinosaurs or something. The releasing of chemicals from an anxiety trigger cause real actual physical things to happen. This, like a swans feet paddling away under the water to keep afloat, is all happening inside the body while we are stood there like a numpty being asked a simple question or told a piece of information.
Here's where the rudeness come out. While the less anxious person can probably just answer the question 'how are you today' the anxious person, like an autistic person is trying to make sense of that quite normal question. I'm using this as an example. It might not be words that trigger you it might be certain places, like hospitals or public transport, pubs, train stations .. it could be anything and mostly certainly will be linked to something bad happening in that place before, that was OUT OF YOUR CONTROL. This last point is key, when stuff is out of your control us anxious types are really kicking into 'fight or flight' mode.
The first thing they do before giving you the chemo is check your weight your blood pressure and your temperature. Here now for the first time, my husband could actually see what is physically happening to me when I go into a hospitals and start to panic. My blood pressure and temperature were so high it is bordering on the levels of not being able to receive my treatment that day. So we have to make the call, this is anxiety causing this and not something else like an infection etc.
I can rant on for ages why I can't stand hospitals, its a combination of watching my parents die, of it looking and feeling like a place where everyone goes to die, like being in an old peoples home before your time, it's one flew over the cuckoos nest for me. I don't like the furniture, the bright strip lighting that gives me a migraine, the sticking plasters that make my urticaria flare up, the other people, God bless them, but they can be really annoying! In the middle of a panic attack an old man ran up to my nurse (I was completely invisible to him) waving a plastic bag containing a used incontinence pant asking where he should put it. I nearly ran out of that place (flight) but instead my 'fight' mechanism kicked in and I blurted out 'oh for fucks sake' ... sorry.
I have a feeling that 'difficult patient' might be written on my notes somewhere.
I now pre-empt my every response with 'I have really bad anxiety' and this helps them a lot to understand my abnormal reactions. So here we get on to 'positive'.
I do get what people mean when they say it but do they get what affect it has on the person they are saying it to. I get that bad shit can happen in our bodies while we are dealing with unhappiness in our lives. And during the stress of unhappy times we aren't really paying attention perhaps to looking after ourselves, we are dealing with the negative. And so I suppose if you have the ability to put a positive spin on everything then your happiness and determination will hep you look after yourself better and probably make you a lot easier to be around.
Being 'positive' is just another coping mechanism. And like the coping mechanisms mentioned previously, it's not for everyone. And here's why it's not for everyone.
Some people just can't be 'positive' for whatever reason and I'm sure there's a few. I think we all understand now why 'cheer up love it might never happen' being shouted as you walk down the street is annoying (god that used to happen to me a lot). Or telling someone with depression 'what have you got to be depressed about? can't you just cheer up). Ok we know now that these scenarios aren't helpful to the recipient so perhaps you can then start to understand why 'be positive' is also not helpful to the recipient. I'm quite happy for you to be positive for me, if that makes you feel better about yourself but truthfully I'd rather you came and cooked me dinner or helped me with the cleaning.
In dealing with this minefield of what I have and haven't found helpful to my situation perhaps somewhere out there this might help the reader think about how to communicate with the friend who has cancer. Being diagnosed, like I said before, makes you feel like a number, an unimportant one size fits all cancer patient. What you need is for the people around you to look at you as the individual that you are and see what they can do to support your belief and coping mechanisms. If your friend's identity is about their hair then telling them that they can wear a 'nice scarf' ain't gonna cut it in their world. But looking at scalp cooling during chemo and sussing out where to find great wigs (really good fabulous wigs of course) might be better, so they can have a contingency plan in place. The total stranger that came up to me in my favourite shop overheard my conversation and said 'sorry to butt in but Ive just had breast cancer and the best thing I did was get my eyebrows tattooed' well this lady was in her seventies and her eyebrows look amazing, they weren't tattoos in the normal sense but micro-bladed hairs in colours that suit your hair and complexion. Top piece of advice for the woman who wants to stay looking the best she can, I got the address of who she went to and was there two days later having it done (get it done before your chemo because your skin is too sensitive after and during).
Other stuff ... well distraction is priceless. Let's not forget the persons identity here again. Once of my best distracting conversations has been with my old tattooist who wanted to ask me about interior decorating her flat. Oh, we've chatted online for ages about paints and colours and it was just what I needed. We have only recently met some new friends around where we live now and they have been amazing, coming round for coffee, inviting me round to hang out on days where I was waiting for results to come through, talking about art and decorating, our previous lives in London, it all helped to pass the torture time in a beautiful way. There really is nothing better than nosing around other peoples beautiful homes.
Try not to be alone, ask for the help you need and try and be kind to your primary carer. Your fuse will be short and combined with the steroids you take around your chemo treatment days, you can be quite volatile, mood swings and anger being predominant. Tell your best friends what is really going on in your head, hopefully by now they will love you anyway if you tell them some really dark shit. Be angry if it helps, it's probably better out than in and try to direct it where it causes the least amount of damage. I think it's important that the people who you feel the most for understand how frightened you are and it's time to drop the very English 'I'm fine' and say how you really are. I'm afraid to say that if they can't embark on this journey with you then they may not be worth having on your friend list, if you get my meaning. You need people who understand how serious this is and so find your support where you can, it might not even be with those who have known you since school it could just be someone you chat to on instagram. I've had some long and really interesting messages from women I've never met in person and some really cold messages from people who've known me since school. So you can't always predict that stuff.
I hope my points about anxiety have come across. This is trying to address the difference between being normally anxious at diagnosis and having bad anxiety before diagnosis. If your friend or loved one has this before then it's going to be tricky trying to find your way through. Try to understand that anxiety sufferers know they are being irrational but they really just can't control it at times. I'm the most rational person you will meet, and so I drive myself mad enough with the irrational thoughts and reactions, it's like an outer body experience half the time when I'm out of the house.
Please try to understand how individual this cancer is for everyone, in the way it is growing inside you, the way it effects your mental health and the way you cope, it's totally different for everyone. It's not necessarily going to be helpful talking to others with it unless, like me and my friend Stephen, we have a secret laugh about some of the things we've had suggested to us. Humour being our coping mechanism. "Oh, Steve, remind me again of the woman who gets in touch with an alien or was it a spirit, oh and you pay them some money and they will sort it all out for you". I'm telling you, if you saw the list we have compiled of all the cancer fighting things we should be doing, you would pee your pants laughing. And when overviewed as a whole the list is pretty funny because you couldn't do all those things in one day, but actually as each and every one of them is being suggested to you theres a guilt that if you don't do it are you hindering your recovery or management of the cancer. So I hope this blog post has gone some way to explain some stuff. We know that the suggestions are well meant and take them as a compliment but the autistic anxious side of us has to deal with information overload and that's a whole other stress that you simply don't need.
It's a double edged sword. Keep it to yourself and you won't have to deal with so many 'words of encouragement' or put it out there but be prepared to spend a lot of time filtering what is and isn't relevant to you. I think that for me I need to have it out there for the few amazing comments I've had from complete strangers who've put me back into my place in the grand scheme of things. My bestie Claire said something far more eloquent that this but roughy it was "you had your story, your book written out about your life and your future and something has come along and just ripped out a huge chapter, it's torn up the present and the future and left you with a hole, and you are stood there saying 'this isn't my story'".
Yeah you're right Claire, this wasn't meant to be my story, but it is now and back to square one, I'm having to write out the new story the one with the different twist to what I'd imagined. If I'm going to find my way through this then while it didn't seem a possibility a month ago, I think that maybe if writing this helps just one person then I've achieved something but I'm also doing it to help myself as well, to hang onto who I am and what I was before ...
The future has become a blank page again. This blog well it's going to have to be my monthly updates about health, coping with treatment and still trying to carry on with our plans for the house, (although they have changed a lot and I will talk about that separately) for Ians recording studio and our travel plans. We hope to fill our days with drives around Norfolk and Suffolk and perhaps I can show you the pretty bits in photos and tell you the shitty bits in words. Let's see. I'm curious to know just how terrible or not chemo turns out to be and whether I want to share that or not, we shall see.
Lastly, big big thanks for all the flowers, gifts, cards and messages, every single thought word and deed has not gone un-noticed. We have found love where we didn't expect it and that's an incredible thing xxx
