I'm tired, but I can't get back to sleep - too many thoughts running through my head, a bit of anticipatory anxiety, though at least I don't have the nausea that accompanied it yesterday.
We had a lovely weekend away at Binalong Bay from Saturday to Monday, staying at a cousin's house. The Bay of Fires was beautiful, and we all enjoyed walking along the pristine white beaches. It was very quiet, apart from the sound on the gently rolling waves, and warm enough for the boys to play for a couple of hours at the edge of the water, digging a well, a channel, and a moat, and then digging each other's legs in. The beach we chose, Cosy Corner, was sheltered from the wind, which had frozen my head through my one polartec beanie on the first day. A frozen cranium is very unpleasant - three beanies (silk, polartec, then wool) defeated the wind chill on the second day.
I drove the first bit from Launceston to the kennel at Longford - I usually find driving relaxing, but I started to feel angry about having breast cancer, needing treatment, and the effect on my family. This wasn't compatible with serene motoring, so I let Ben drive after Longford. Ben's never had a major accident, but I don't enjoy being driven by him, his style is so different to the slow and steady manner of my father, a life-long school-bus driver. Before chemo, I used to prefer to drive to avoid getting stressed by Ben's tendency to drive near the centre line, to accelerate and decelerate rapidly, and to slowly veer to the side when looking at something off the road - my stress would irritate him, and make the trip unpleasant. I try to modulate my stress, but having been involved in two nasty motor vehicle accidents (one on a bus that ran over a motorcyclist in Thailand, the other where I was T-boned at an intersection), I have a heightened sense of danger on the road, and I can't always suppress it. So the 2.5 hour trip to Binalong Bay was a challenge, especially on the busy sections of road. I started to feel quite panicky, and had to practice deep breathing and look down at my hands to calm down. It was a very visceral feeling of anxiety, I could tell it was irrational, and it was a little like the irritability I've been getting when I'm overtired. It rises by itself, unbidden, unwanted, and the best way to deal with it is to retreat into a quiet place within myself, breathe deeply, and let it pass. It helps if I can get my family to understand that questions, requests, and conversations are not helpful to me when I feel like that. Playing the Goon Show kept the kids entertained once we'd left the highway and I was feeling less agitated.
So it was bloody fantastic to finally get to a sleepy beach town, surrounded by bush, with a bizarre statue of a woman in a bikini and wind-swept hair welcoming us to Binalong Bay (which the kids kept calling Billabong Bay). Apart from the brain-freeze, walking on the beach for a couple of hours was brilliant, and lighting a fire and watching the sun set over the bay was lovely. We spent nearly 3 hours at Cosy Corner on Sunday, after driving as far north as we could up Gardens Road - it truly is beautiful scenery, with a number of lagoons that just cry out for people to take kayaks and explore. There's one cafe in Binalong Bay, which closes at 7 on Sundays (just in time for the power outage, that lasted until 8pm, by which time both boys had fallen asleep). The food wasn't bad, the service was friendly, and the view over the bay was dazzling. We ate there for lunch on both days, and made do with eggs and toast the first night, and a cheese platter the second night - I was too tired to venture out to St Helens for fish and chips, and we'd had enough chips at lunch to last us a week.
When we returned, after 3 days out of mobile range, we discovered that Ben's 89 yo mother had fallen and fractured her pelvis at her home in Melbourne. She's in St Vincent's Hospital, where the orthopaedic team are planning to manage it conservatively, get her walking again, and send her home. She's in a lot of pain, and Ben's initial impulse was to go and see her this weekend. I'd love to go and see her too, but as she's likely to be in hospital for at least 6 weeks, and there aren't any medical issues, I've made it clear that our priority is to get me through these last two rounds of chemo (not that I can travel interstate anyway). I ended up in hospital overnight four days after my last chemo, so I need Ben here for at least the next two weekends to be able to look after the boys if I need to be admitted again. I've spoken to Hannah's nurses three times, asked for the ortho registrar to call Ben twice, so I'm hoping that will reassure him. And I should be well enough for him to go the weekend before my next chemo. It's hard to put my foot down like this, I usually try to accommodate others, but I need him here.
I saw my oncologist yesterday, and asked what I should do if I get a fever within the first few days of treatment, like I did last round. He said "follow the usual precautions, and come into hospital". I reminded him that he thought the fever was probably a reaction to the G-CSF injection, as there were no other signs of infection. He repeated that we should "follow the usual precautions". I said I was sick of coming to hospital and feeling like I was making a nuisance of myself. He said "you've come so far, you're nearly at the end of your treatment, you're not making a nuisance of yourself, it's not worth taking any risks, so let's just follow the usual precautions."
Damn. I'll pack a bag in case I need it, and get them to leave the needle in my infusaport, just in case I have to go back to hospital in the next seven days. I hate it so much. I just want to stay at home, I just want to feel well again, to have enough energy to do all the decluttering in our house that is crying out to be done, to go for long walks, to not get tired when talking to people. I get so angry when I hear about people who have been told they have the BRCA1 or 2 genes and who take a wait and see approach. Don't they have any idea about what breast cancer treatment is like? That screening sometimes picks things up when they've spread? About the dangers of being diagonosed when pregnant? I wouldn't wish my treatment on anyone, it's lonely and exhausting. If I'd known I was going to get breast cancer, I would have had my boobs off years ago. I lulled myself into a false sense of security, thinking that 7 years of lactation would reduce my risk. As I come towards the end of my chemo, I'm beginning to feel increasingly angry about it all - one of the famous phases of grief - denial only lasted from the 17th to the 20th of January, then I thought I moved into acceptance, but maybe that was just the survival phase.
I'm struck at the moment by how healthy people live in a state of delusion - deluded by the belief that they will always be healthy, that ill health happens to unlucky other people, but that it won't happen to them. I think it's a useful delusion - to be excessively worried about your health all the time is not adaptive, as illustrated by hypochondria. Even when you get ill, you need to maintain some of the delusion that you will be immune to mortality, that things can't get worse - if you spend your time worrying about everything that could go wrong, you waste valuable time when you could be doing pleasant things. Though it's a delicate balance - if you take a blasé attitude, aren't informed about the side-effects of treatments and natural course of your condition, then you might overlook issues that could be treated...but you don't want to focus too much on potential negative outcomes, and I'm developing a fear that I've jinxed myself through being informed - but that's just superstitious poppycock! I'm not spending all my time reading about side effects, or breast cancer - I've absorbed the information I need, research new questions when I think of them, and spend the rest of my time wondering how I balanced work and family life.
Taxotere No.2 will be happening at 9 this morning. I will be accompanied by my friend Shawn for an hour of enjoyable conversation. They will give me ice gloves for my hands again, and I'll ask for ice for my feet as well, as I had a bit of peripheral neuropathy in my feet after the last treatment. It seems that making the extremities cold can reduce the amount of uptake of the drug in those areas, and reduce the risk of damage to the peripheral nerves. I have a doozy of a haematoma on my left big toe, which I stubbed on something a week ago. It had been aching a lot, and I was worried that my platelets might be down, but they were fine. My oncologist said that blood vessels can become a little more fragile with chemo. Great! I don't want any more sore toes, it's very painful!!
My eyebrows and eyelashes are slowly falling out, which is an interesting look. Paradoxically, I'm getting a light fuzzy covering of hair on my head, though it's not thick enough to grow yet. I think I'll continue to get buzz cuts until it starts to thicken up, I don't like the sparse regrowth. As for the eyebrows and eyelashes - I'll see what I can do with eyebrow pen and mascara, though it's hard to make eyebrow pen look natural. A beanie pulled over the eyebrows works better! I tried mascara yesterday, and only had about 6 lashes on the lower lids, and 10-20 on the upper lids (I didn't count, but it seemed like less than half of the previous contingent). One good thing about feeling ugly all your life is that these things don't worry me too much. Putting on weight, however, is something I need to fight against. I've become deconditioned, but need to get out walking more, to combat the fatigue, and burn off the calories (not that I'm eating that much)
Well, sorry about the boring blog. It's been a while, and I've been feeling rather down. I know that the treatment is nearly over, but just as the time remaining is decreasing, so is my energy.
I have a whole stack of thankyou cards to write to people who have sent me cards and little gifts - I'm sorry I haven't made much progress on them yet, they're all appreciated.
There was research discussed on the media this week talking about how social media increases young people's sense of connectedness, but also makes them feel lonely. This story rings true to me. I can see that up to 30 people read each new post, and this blog has had nearly 4000 hits. I get nice comments when I link the blog to facebook, and there have been a few emails and phone calls as well. But while the blog is obviously doing it's job of saving me having to tell my story repeatedly to family and friends, it's also meaning that I'm not hearing from people as often as I'd like. I'd still like to know what's going on in your lives, I'd like to hear about the world going on outside. I'd love to hear about your babies, young and old, your loves, your passions, your achievements. I don't like being isolated from people like this, it's starting to get me down (and I feel pathetic to state it, which shows how desparate I must be :)
Please feel free to call me, or email me at fiona.bardenhagen@gmail.com, and I'll respond.
And don't worry, I'm still feeling positive, and incredibly grateful that my tumour was detected before it spread, that it wasn't necrotic, that it was detected at all, that I wasn't born 50 years earlier, that I'm living in a country where we have universal health cover that has saved us going into debt to pay for the treatment, that treatments have advanced so much in recent years. And for lorazepam, that short-acting benzodiazepine that helps with nausea and nerves.
