I've been following the tweets of @DeborahJaneOrr who is an author who has terminal cancer and today she was saying about the amount of messages she's had saying 'good luck'. Although I have only recently discovered Deborah I am following her because it puts into perspective for me that I could be a lot worse off, also to prepare in case my situation changes and to hear the uncensored words from someone else who is also incredibly pissed off and not scared to say it.
Her exact tweet today says "people are saying this a lot to me so there's obviously widespread belief in the efficacy and general chill of the phrase. So I'm sharing further "Good luck with the terminal cancer"!!! It goes "
I love the use of 'efficacy' which for the uninitiated means 'produce the desired result'. And in one short but bitter tweet Deborah has summed up something eating away at me. When did we all become so self centred?
I'm amazed at the ignorance surrounding what is the most common and life threatening disease in our society at present. On the tv I heard the quote 'one in two of us will have cancer', and so why are we so ill informed about what this will entail until it's right on top of us, and even then it seems that many people around you will treat it like you've got a cold - take the drugs and you will be better (meaning "I don't want to deal with your suffering, so let's avoid it"). Maybe because it's so common that we've become blase as a society ... oh dear another one bites the dust, I had better send them a few words of encouragement.
I recently had tests back from the Oncologist to show that at present there are no cancer cells in the biopsies taken. While this is good news for now there are several reasons that I'm not jumping for joy.
Firstly the treatment is by no means over, there is still so much more to do and secondly, who's to say this won't return, it's such a lottery that I don't feel it will ever be far from my mind as my damaged body will keep telling, me - life will never be the same again.
Not only will life ever be the same again, but you are likely to find that your relationships with everyone else will also never be the same. People will fall into two categories - those who helped and supported and those who didn't.
There's so much stuff that happens to you on a daily basis while going through treatment that unless people bother to properly engage they will have no idea of the months of suffering for you and your carer. Perhaps you have to be in the same situation to know just how much support you need. None of us really want to ask, so the offer of practical help is absolutely invaluable and it's in very short supply it seems. And during all this you are desperately trying not to be too self centred about it and keep an eye on others who still need your support, for what that's worth.
A friend of mine who is terminal was saying the same thing, and I wonder if it's our pride that stops us asking, or the denial of those around us that you are no longer capable.
The small jobs around the house like cooking, cleaning, washing your clothes or hair, putting clothes back in the wardrobe, fixing something broken, changing the bedding, gardening, trips to the hospital, it all mounts up when you are sick. And perhaps you shouldn't have to ask, perhaps the people who call themselves friends and family should consider this on a more urgent level because all these small things affect your quality of life. The simplest help can make all the difference, so if you want to know how to really help your friend or family member, then just get over to see them and go through these jobs. A visit in person and a physical practical effort is worth a million.
Where are we then? Well it started in December last year, there's diagnosis, tests, waiting for test results, more tests, more waiting for test results (and over Christmas this was so slow, I mean a month of waiting for the scan and getting the results to say how far the cancer has spread).
Then chemotherapy starts, but it's not just sitting in a chair for a few hours of IV drugs every three weeks, it's the blood test two days before, the steroids for three days, the anti-sickness for many days and then the side effects. It's many trips back to the emergency department or the treatment centre to get your blood tested yet again to see how low your white cells are, have you picked up an infection, the injections to stimulate your bone marrow and all the pills to deal with ; sore throat, awful taste in your mouth, food not tasting the same, sore twitching dry eyes, diarrhoea, constipation, stomach cramps, nausea, insomnia, spots, dry skin, sores in mouth, finger nails crumbling, hair loss, forgetfulness, sore joints, weakness, high temperature, ruptured veins, fatigue .... I've forgotten half of it I'm sure, that'll be chemo-brain.
Mid way through chemotherapy I had an operation to remove the tumours and my lymph nodes. (The operation timing seems to vary from person to person in the order of things, I don't know why this is). So then we get all the complications of that - infection, abcess, cellulitis, pain, problems moving the left arm, lymphodema, backaches, shingles and more hair loss.
Several weeks after the operation we are back for the second onslaught of chemotherapy, different drugs this time, same side effects pretty much. Another three months of all that again (even if the biopsies show no cancer cells you still have to keep blasting away in case the cancer is present on a micro level). Then the three weekly injections of herceptin for one year and the 28 days of radiotheraphy, which is every single weekday for one month at a hospital over an hour away.
This will take me to a full round year of treatment.
Recovery from chemo and radiotherapy is different for everyone but one can expect three months or more of side effects before you start to regain normal function.
During all this, if you are lucky, you will have someone who drops everything to become your carer, to help you in and out of the bath, to rush you to hospital at 4am, to help you get dressed, to apply creams, bring you drinks, change your sheets, take your temperature and so on ....
The strain your carer will be under trying to keep all the balls in the air is horrible, and there's bound to be some areas where they also need help. My husband is not just a rock he's a mountain but,(sorry love), he's a terrible cook. And I'm lucky that we are in a situation where he's been able to drop everything to look after me, many people still have to try and go to work while their partner is going through this. My husband also has to look after his father who is a five hour drive away and so on the few days each month where I don't feel too ill, we get stocked up on microwave meals so he can go and care for his Dad for a few days. During these days my good friends have been feeding me and running me to hospital appointments etc.
And we are the lucky ones, because we don't have small children who need things to be normal, or careers that can't be dropped or a million and one other things that could be worse.
The word 'remission' had no meaning for me. This is far from being over, with many more months of needles, hospital waiting rooms, time spent in queues for tests, days of not being able to get out of the house. My body is not functioning as it was, my physical fitness and my physical looks have all taken a massive toll.
I'm making a point here. I'm saying this publicly for all those who are also thinking the same. We don't expect everyone we know to drop everything, we understand that people have their own lives, but if you want to support someone with cancer there's a ton of stuff you can do, and maybe just maybe, this is the time when you put other people before yourself.
Back to Deborah's tweet about 'good luck with your cancer' ..
Seriously!! what is wrong with how we have decided to communicate with each other these days. Not only does it seem that 'instant messenger' has replaced getting off ones arse and visiting a sick person, but the words sent in the 'instant message' have been condensed down to a few cliche phrases.
Whatever happened to actually just writing what you actually think and feel. When did it become ok to dismiss someone's life threatening illness with 'good luck', 'stay positive', 'be strong' ..... or 'sorry I'm too busy'.
It's probably not cool to be so pissed off so publicly. We cancer sufferers are supposed to suffer in silence it seems, be graceful and thankful for every tiny cliched mantra trotted out at us. Accept the utter bollocks of everyone having an opinion about what you should eat ... because obviously you only get cancer by something you've brought on yourself.
Generally speaking I'm writing this for two reasons, if you want to support someone with cancer then consider what I've said above, if you can do something in person then no effort is too small. If you can only write a message then make it personal and thoughtful and your own words.
Let's not become a society affected by Twitter (and the like) where our only engagement with other people's lives is a short phrase, copy and pasted, press send then ... well, that's them dealt with.
Has our new way of communicating made us so detached? I believe it has. While there are many times when I'm in such a bad place I can't speak to people, I too prefer to write. However, let's have a look at that. It's not the writing that's at fault but it's the thought behind the words that I have a problem with. I've had some beautifully written messages and cards which truly show that these people love, care and admire me and they really want me to hang around for some time to come.
But then there's the equivalent of Deborah's "good luck" messages and worse still there's the silence, the all consuming self centred silence of people who's priorities are somewhere else. Don't be that person.
Photos are from last year as I'm currently having problems lifting my camera ...
