A reminder that the below answers are my answers, they may not be true to everyone and they are definitely not professional medical opinions… but I guess any answer at this point is probably one up from what you have currently… baby steps are good…
How do I support a friend who has Cancer? I don’t know what to say or do…
This was asked by a friend who lives overseas- my response would be to just keep in touch. From Facebook messages, likes and comments to Whatsapp conversations – just touch base. It has been strange but a lot of my support has come from people who do not live within a 10km radius of my house. Friends in Cape Town, family in Holland and Durban – people who can’t just stop by. Just a message letting you know that they are thinking about you goes a long way. I often find that it feels like I have dropped out of society, probably because I can’t always attend social things like braais or drinks after work- random messages that show you are still thought of, go a long way. I’d rather decline 20 invites than my friends not invite me at all.
I have been lucky enough to not need much support with lifts to and from Chemo, my mom lives on my road and has all the time in the world to drive me, Miss Daisy. Perhaps this is something you could offer someone else, if you ever met someone else having chemo. I remember I had a few offers from people at work, and I always thought it was a really kind gesture – it sucks feeling that you are a burden, so offering – often – is not a bad thing.
My other bit of advice is just be there- be the same friend you were before. Don’t stop calling or texting. Yes it gets tiring updating 10 friends a week on the same story, but after the tears there are always laughs at something – and it’s those laughs that make it worth it. I am the type of person that when I am not feeling my best, I go quiet and I stay home… friends can pick up on this – GO to their house, force them to let you in. My friends can ask me ‘can I come over?’ and I will say no… if I haven’t seen you for over a month, you need to just arrive with a milkshake, even if it is just for 5 minutes. It is not easy asking for help or letting people know that you are not okay- it is not easy being strong all the time.
And, just be normal. Just because I am sick or having a crap time on chemo- doesn’t mean you need to walk on eggshells around me. Ask me how I am, tell me you are thinking of me, but then also tell me how drunk you got last night, or what you got at the shops or who you ran into. Just because for some days of the week I feel a bit down, doesn’t mean you need to say the right thing… there IS NO right thing. Anything is fine. Just be normal.
Oh, and also, having cancer is now my norm. Chemo is part of my routine- like gym and Sunday lunch with your gran is for you. And I am okay with it. It isn’t scary, it doesn’t make me cry, and I don’t feel special for having to have it – my life is a bit different to yours, but just because you do Piano lessons, doesn’t mean it is all we should talk about.
How sick does chemotherapy make you? Why can’t you man up and keep on working through the nausea?
The truth is, chemotherapy affects every single person differently. There are generally a list of 10-20 side effects per chemo type, but if 10 people were in a room, we would all have a different selection of effects that pertain to us. So, to answer the question of why cant one man up and work through it? I guess some people could… I couldn’t. I still cant – it doesn’t make me any less of a (wo)man because of it.
How sick does chemo make you? I’ve used this analogy a hundred times, probably because I KNOW people my age can relate- the day or two after chemotherapy feels like the worst hangover of your life. You know the kind when you wake up and throw up instantly, it feels like that – except you can’t throw up, because you are actually just nauseas- not sick. So, the feeling you have just before you throw up? That cold shiver and the feeling in your tummy? You have that, none stop for 2 to 7 days sometimes. Pregnant women can relate to this I believe. Then on top of this nausea, some other side effects I have had are aches and pains – my muscles and joints have felt like I have run a marathon AND had flu at the same time. The chemo I am on now, has effects on my ears – they ring constantly. It feels like I live in lala land because my right ear will ‘zing’ then my left, none stop and all day. On top of this (and this all happens at once) you try to eat things, but the things you used to love are not appealing – the ulcers in your mouth and on your tongue make half the food feel like lemon on an open wound. Everything tastes off. The Red Devil chemo I had, had nasty effects on my senses- smells could make me sick, food tasted like wood; the canteen at work was a mine field of torturous smells and sights of foods I had no desire to eat.
You also feel insanely tired; with every cell in your body being nailed- your body is burning energy just keeping your healthy cells going – you cant make it through a work day like you used to. Thinking is tiring – TRUST ME. If I had to be in meetings and use my brain, I could last a couple hours max but if I sat quietly at my desk just nailing emails- I could last more.
If someone you know can work through a day while they are on tough chemo – they are superstars. For me- going to work was a saving grace from the nothingness happening in my flat. Surrounded by bottles and boxes of medicine – my desk with its demanding to do list and emails were and still are a welcome distraction. I go to work as soon as my body tells me it can – and I take my body home as soon as it tells me to, not listening to my body will land me in bed for 24hrs sleeping the following day. It’s a fine line working out how much work is too much- I hope everyone can have the support that I have had at work in this regards.
Would I suggest girls going for genetic testing if their moms or grandmothers have had cancer?
Truth is- my mom had had breast cancer twice when I went for a mammogram and genetic counselling at age 29. You can do it online, you fill in a million pages of family tree information and then they ask you some questions – I was told that unless someone else in my family had cancer, there is no reason that I would be likely to get it. I went for genetic testing… they didn’t see any red flags. I guess cancer doesn’t play by those rules.
My advice would be and my comment is, that if your mom or grandmother has or had cancer- like breast cancer, then do like I did – be aware of it and check your girls out 10 times more often than your friend who has no family history. Checks became part of my daily or weekly routine; shower time – soap up and do a quick check. As a woman you know what was there the week before and what is new today- it’s just one of those things. I knew to look out for changes in shape, nipple discharge of any kind and obviously lumps and bumps. I had found a lump before, under my arm, but it turned out to be a fatty cyst (biiig relief!) funny thing is – well, it is not that funny, but when I found my lump under my arm (remember that I found it by just rubbing body cream down my side; the lump was on the outer edge of my breast- size of my thumb nail) but the week or two weeks before that I had done a self-examination – I had gently squeezed my left nipple- and tiny spots of blood came out.
Yip. And apologies for the overshare- but you asked for answers.
I don’t think I have ever mentioned that before – or admitted it – I guess overshare has no relevance on my blog anymore. But yeah, I had a really early warning sign – I KNEW that nipple discharge was a bad sign. What did I do? I convinced myself it was nothing and I must have squeezed too hard. It couldn’t be cancer. It was a mistake. Luckily for me I guess, I found the lump not too long afterwards. But yeah I was one of those crazy people who finds a sign and ignores it. I kick myself because of that. Now, when I find a mole that looks like it has changed by a fraction of a millimetre I am at the Doctor checking it out. Please – if you show ANY sign of ANYTHING that could be cancerous, check it out… it’s the early detection that saves your life.
I think that our generation, with our woollies food that lasts 10 days and all the fizzy drinks we drink – our chances of cancer are higher than our moms and grandmothers were – so genetic testing isn’t enough to be 100% factual, will you or wont you. Just know your body, check your body, and think positively while you do so- I never felt my breasts thinking ‘Oh God I will find cancer today’ it was just a routine check, like brushing your hair, you don’t brush it fearing how much will fall out or if it will turn grey while you do so! Being aware and being cautious is all you need to do.
A question about how can chemotherapy not work…
Easily I guess. Just like how sometimes you can start your car but the battery is dead. Nothing has 100% success rate, because nothing is 100% the same. Cancer is the devil – Oncologists are the closest people to understanding it- but I think other than that, they only maybe understand 48% of it. In a broad generalisation of chemo, there are only like 6 types available… but think of how many cancers you can have. The treatment options are limited to variations of different cocktails all made of the same ingredients – at some point, sadly, it may not work as we wished it would. Reality is something that gets sucked up into the cancer conundrum – when you are diagnosed, or someone you love is diagnosed, it doesn’t matter what the reality is, you become so desperate to find a cure that you will do anything and you believe anything – look at how close I came to flying to Houston to a clinic that has as many bad things going for it as it does good things (but I have discussed that in detail before). Hope is a powerful thing – but you can’t lose track of reality, and sometimes the reality of the situation is that perhaps the cancer is too far gone to cure. Perhaps people just need something to blame. Perhaps it isn’t the chemo that failed… perhaps the cancer just won.
Why don’t doctors come forward with everything they know?
I don’t know. That is my honest answer. But having been on the receiving end of only half the story, and having moaned about it to a few people, I have had some advice which may have kind of perhaps made sense.
Perhaps they don’t tell us everything, because they don’t know. Like my estimated time left based on my situation. There IS a rough statistic of 3-5 years. But my oncologist wouldn’t even tell me that (I went to a second oncologist who perhaps found it easier to tell me because she didn’t know me), but even being told this, there are still the odd few that die within days of rediagnosis or that live to be 98 years old – it is JUST a rough statistic… somehow, perhaps in my deluded anti-depressant fuelled mind, I plan very much to be that odd ball statistic that grew the curve… 98 may be excessive, but late 70s would be grand. Another reason that someone who commented on my blog pointed out, perhaps they don’t tell us because we don’t need to know. If it meant no difference to my health, why would the doctor explain just how badly my chest was infected with Cancer. Georgia told me that she couldn’t operate, that I couldn’t have a lung transplant, and that the cancer was in both lungs. What I found out later by taking a dictionary to my CT scan results was that I had a 10cm x 5cm tumour in my pleural lining and innumerable (too many to count) smaller tumours in both my lungs… why didn’t she tell me how bad it was? Well, I was pretty bummed just at the news, perhaps she felt it would be a kick in the ribs to hear the truth. A bit like when parents tell you that Fluffy ran away… fluffy was put down or was hit by a car – he didn’t simply wander off. But it is easier to digest that perhaps he just ran away.
I think the trick is to get to a point with your doctors whereby they understand how much to share with you, and that you find GOOD alternate sources of information. Google is not one.
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That is pretty much the gist of the questions I got, I expected so many more ‘medical’ questions – but no, most of them were similar to the above. I hope my answers shed a bit of light in an otherwise very dark area x
Because I always post a picture, and because I couldn’t find a relevant picture for the above post – you get to see my amazing cat, Charlie, when he was a kitten – taking on something bigger and scarier than he was, much like each of us have to do, in our own ways, every day x
tyneamite 