Check out my new wheels! I’m not going to lie. Things have not been easy or great lately.
As you know, I got diagnosed with some clots on my lungs a few weeks ago that left me quite breathless. I was being treated for them, but not seeing a lot of improvement. After about 10 days, the breathlessness seemed to be worsening.
A couple of weekends ago, I had lunch and pedicures with some friends and went home and had a quiet night. The next morning I had plans for brunch with a friend. It took me over an hour to shower and dress myself and it completely exhausted me. When she arrived, the thought of walking out of my house to her car to go to brunch, was just too hard. We considered for a while going to hospital, but then we (me) just decided to hang out at my place and just not exert myself at all.
The next night I finally got to have dinner at Montrachet with some friends. I ticked off another place I’ve always wanted to eat. The crab soufflé and creme brûlée were absolutely delicious. Even though I have pretty much zero appetite at the moment. I only had breakfast that day so I could make the most of dinner!
I had chemotherapy the next day and I decided to pack a bag for hospital in case there was something that could be done in hospital to speed up my recovery from the clots and help me breathe better again.
As planned, I met with the palliative care doctor and discussed my most recent symptoms: numbness in left arm now goes to shoulder, frequent muscle cramps in hands, feet and calves that are painful and wake me during the night, some significant progression of the disease in my lungs, liver and lymph nodes.
Before I started back on chemo two weeks ago, we did a CT scan to get a baseline of the size of my various tumours so we can see how this chemo regime works over these next few rounds. Unfortunately, it showed the tumours in my lungs had doubled in size, new tumours and growth of existing one in liver and growth in cancerous lymph nodes. My last scan was in mid-June and this was the most significant progression I’ve had since my metastatic diagnosis last October.
I had to take a break from chemo after I got sick in Adelaide. I skipped chemo that week and then by the end of that week, I was told I needed to have brain surgery. So I had to take a break from chemo while I had the surgery and recovered from it. Then my follow-up MRI showed new lesions in my brain and I had whole brain radiotherapy for a couple of weeks and couldn’t have chemo during that time. So I had a break from chemo from 18 July to 12 September for circumstances beyond my control. The other issues were the priority and I had no other choice. I had a break from chemo from 1 February to 11 April earlier this year and did not have the same level of progression as I have had now. I guess the disease is becoming more aggressive.
I have some naughty cancerous lymph nodes that appear to be making my life miserable at the moment. One of them is pushing up below my sternum and trying to block the entrance to my bronchial tubes to my lungs. Another one looks like it’s pushing down from above. And they are growing. There is another cancerous lymph node within a section of my lung and it looks like it might have killed off a bit of my lung, which has reduced some of my lung capacity. So all of these factors seem to be contributing to my breathing problems.
I am having radiotherapy to my chest to try to reduce the size of these naughty lymph nodes. One session a day for five days in a row. I have to lie flat for these sessions, which I was a little nervous about as I’ve been having trouble breathing when lying flat. But so far, so good. During my radiation planning session, they discovered the tattoo dots I had done for my original radiotherapy after my mastectomy could be used to line me up on the machine for this chest radiotherapy. So no new tattoos required!
Of course, the downside of having radiotherapy is that I can’t have chemo at the same time. Always trying to get the balance right! There are also concerns generally about whether this chemo regime will work because sometimes it can stop working after you’ve had a significant break.
Even though I don’t like hospital stays, I am glad I went in for this one to help get things back to a manageable level. I have a small house, with just four internal stairs, but I was finding it a hard slog getting around. Things were easier in hospital. I missed my dogs, but I knew they were in good hands with my Dad.
There were lots of discussions about quality of life vs quantity of life while in hospital, but I am not ready to give up. I want more time. I am mentally as sharp as ever but my body is starting to fail me. I am hoping to whip it back into shape. I am also realistic that there are things beyond my control. If one of those tumours in my brain decides to do something silly, there’s not much I can do.
I am hoping we can turn things around soon and I can start feeling a bit more normal where I can enjoy some more travelling, dinners and catch-ups with friends and family, and, of course, many more desserts!