I am definitely not turning this blog into a Cancer Blog. If I was going to do that then I would post every day and make a book out of it, like this lady (thanks for the tip Lou I have now read her book and 'enjoyed' it, if that is a word that one can use given the subject matter!). But I don't feel the need to document every single up \ down, needle in\ out, drugs-Chinese herbs-homeopathic remedies taken \ swallowed.
Having said that, this blog is about both stuff I like and stuff that happens to me, and BC is certainly part of the latter . And it is sure taking up quite a lot of time at the moment.
I have had quite a few questions about it so I thought it might be interesting to explain chemotherapy and how it works for me. To make it more palatable I have interspersed some current garden and around the house pictures. (Every garden in Melbourne is lush and verdant at the moment. This has been the wettest and coldest summer ever, with almost half our yearly rainfall in three months. Good for the plants, and great for our water storage).
We planted lavender here to fill up a dead spot in the front garden and it is thriving
As someone has said to me, chemotherapy is like using a tank to kill an ant. For me, it is overkill in every sense of the word because no further cancer has been found in me. There may however be microscopic rogue cells floating around which are too small to detect, and that is what the chemotherapy nukes. And as far as I am concerned, the stronger and the more powerful the chemo, the better. And that was my specific request to the oncologist. I keep asking him if the chemo is strong enough. He just laughs and says 'yes'.
This is the smallest of our three grass trees - again these are doing well. Note they are in a built up hill, which lowers the risk of them developing a dislike for the soil environment
Here are four things about chemo I have learned in my crash course :
1. Contrary to many people's opinions, the chemo chemicals do not 'build up' in your system over months, making the symptoms worse and worse. In fact, the chemo itself is gone from your system in the first few days. What lingers are the side effects which are caused by those chemicals. These may lengthen a bit. The other old wives tale is that 'it gets worse'. In most cases, it doesn't get worse. In fact the first chemo can be the worst because one is so nervous about it.
2. Everyone's chemo experience is different. I think pregnancy is a good analogy. We all know people who had the worst pregnancy ever - constant vomiting or nausea or reflux or insomnia etc. Sometimes that pain is real, other times one person will feel the same pain so much more strongly than another. I believe childbirth and raising children give one a resilience and strength which we don't even know we have until we need to call on it. I for one have always suspected I have a reasonably high pain threshold. I say this because breaking my big toe 10 years ago was more painful than two drug free labours. So whilst talking to others is useful in a general sense you have to bear in mind that they may be bedridden whilst you may be feeling off but able to be up and about. To repeat: everyone is different.
3. Never ever ever read the Internet. A lot of the information out there is from the US and UK where the treatment protocols are different. Also, there are many posts on side effects felt by people. This can be very scary. See 2 above. So now my first phase of chemo is going okay I have something new to worry about - the second round (Taxol) which according to many American women can give wrenching bone aches. But really, I am me, and they are them. It shouldn't really be relevant to me if Ann from Annapolis in Maryland has a terrible time with her chemo. I may not have the same experience.
4. Forget your memory of the uncle who did chemo 15 years ago and spent 7 months vomiting. The nurses have explained to me that whilst the chemo drugs are largely the same from that time, what has changed is management of the side effects and the effectiveness of the anti-nausea drugs. 10 years ago my hospital would have to admit many people two days after chemo suffering from dehydration and mouth ulcers. They now tell you to drink at least 2 litres of water the day of chemo and following and the admission rate is much much lower.
These are those autumn coloured hydrangeas. I would prefer the blue and white but these are looking pretty good at the moment.
So, to the chemotherapy itself. I do this at an oncology suite in my hospital in East Melbourne. It is a large sunny room with padded recliner style armchairs arranged around the wall. There is a waiting area, where you check in and wait to be called through for a blood test and to take your anti nausea pill no 1. The blood test checks for white blood cell count. If it is too low, you cannot do chemo that day. If it is at an okay level, chemo can proceed.
I am doing 'dose dense' chemo which means I have chemo every two weeks instead of three or four weeks. Not because I am in any kind of hurry but this has had good results on 'young' people like me in New York and other locations, and it means the first phase is done and dusted in 8 weeks.
the maple tree leaves are very multiplicitous this year.
The only way my body can take the dose timing is for me to have an injection of something called Neulastin every two weeks. This amazing drug gets into your bone marrow and builds up your white blood cell count. This does cause bone aches but I haven't found them to be that bad so far.
There are two interesting aspects to this injection. First, I decided to do it myself (as it has to be done the day after chemo and I couldn't be bothered going back to a hospital or to a local doctor). I thought it would be a good skill to learn. You have to inject it into your stomach (into a little pinch of fat - OF COURSE that was hard for me to find!). If you are diabetic or have done IVF, none of this will be new to you. Not such a big deal really.
The second aspect worth mentioning is the cost of this injection. This is the first and last time you will ever see a price tag here:
Yes, you read it correctly. $1971, not $19.71. I believe the price might come down if it was more widely able to be used by cancer patients - the PBS is covering mine but (this is for anyone of influence in the Federal Government who may be reading) it should be automatically available to all who want it without having to wait.
(As an aside, my second chemo session started with a bang. Just outside the hospital I managed to drive straight through a red light in front of 3 manned police cars. I slowed down waiting for them to catch me and fine me. My mother said 'Okay - I will burst into tears and you tell them you are having chemo'. But they either didn't see me or didn't care so I missed perhaps my best Cancer Excuse Opportunity so far.)
Once you are cleared in blood count terms, you pick a lovely armchair and they hook you up to an IV with saline and anti nausea drugs no 2. And then they drip drip drip the chemo into you. The first, Andramyacin is bright red. This is the bad stuff. The nurse has to stand over you whilst it is going in to make sure it is going into the vein and not the surrounding tissue.
Then comes Cyclophosphamide, which takes a bit longer as the bag is bigger.
All up, done in two to three hours. I spend my time talking to whoever has come with me, or reading my Kindle, or looking (not too obtrusively I hope) at the others around me, trying to imagine their lives and what they did and thought about and loved before this happened to them.
It goes without saying that cancer does not play favourites. A wide range of people are here - the burly tattooed man who sits quietly with his aged mother, the elegant silver haired cashmere wearing lady, men sitting with their wives, doing the crossword or staring wordlessly into space, a young girl who appeared one week with her tiny baby and husband, looking tired and drawn (the next time I saw her she looked fantastic), youngish and older men, in suits and shorts, and women in suits, wigs, scarves, high heels, trainers and everything in between. On Monday a women receiving chemo mentioned that her husband had lymphoma. I thought: how much bad luck can one person have?
Aren't these beautiful? I bought them this morning and instead of the usual round bowl thought I would use a tall vase.
Having said all that, it is not a depressing place. The nurses are incredible, and laugh and joke but are always super professional. Almost all the other patients look completely normal and healthy, like me.
Then come the side effects. For me they have been mostly just nausea and towards the end of the week, tiredness. I fall asleep on the couch at 8.30 pm, and am going to bed early. Not sleeping that well but that is another matter. And I seem to have become a bit anaemic this week so I am eating lots of red meat and beetroot and dried peaches. Oh and my hair of course is still falling out. Not planning to mention that again.
This fireplace is still looking a bit too zen - one day that large gilt mirror will appear from the sky, I hope
It is not unbearable, have to go to bed pain. For me, it is manageable pain, which definitely fades if you are distracted. And of course there are so many anti-nausea pills and other things to take. I have gone from being someone who, in deference to my Scottish Protestant heritage, never even took a Panadol for a headache, to popping literally dozens of different pills a week, sometimes, because of the homeopathic stuff, it is more than 15 per day!
My biggest fear, as a lawyer, was what is called 'chemo brain'. I was told that this can last for months and months and the thought of having difficulty processing my thoughts was quite horrifying. Whilst I have had some fogginess, it seems to come and go. It is a bit reminiscent of a red wine hangover, without the headache and the memory of a fun time the night before. At this stage, to my great relief, this part of it does not seem to be permanent.
Current bedside reading, many half finished alas. I am looking forward to the Amy Chua book about Chinese mothers. I would like to be a Chinese mother in some ways.
I do hope this has demystified some of the chemo fables. I was quite terrified going into this treatment stage, and for any of you unfortunate enough to do it too, it will hopefully not be as bad as your imagination might make out.
xoxo
