I am starting to believe I jinxed myself by starting this blog and saying that nothing exciting really happened with me and how I’d been lucky avoiding the worst side effects of going through breast cancer treatment.
It seems like since then, things have started to go wrong. My latest problem is that I have clots in my lungs that are causing me to be quite breathless if I do any exertion whatsoever.
The good news is that they are very treatable, but the bad news is that it takes a little while before the medication starts working and breaking up the clots. So at the moment I am taking things very easy or I begin panting like a dog.
The night before my last whole brain radiotherapy (WBRT) session, I went to bed and found myself having trouble catching my breath. I sat up in bed for a few hours, panted, listened to music and waited for morning to come. In hindsight, I can’t tell you why I didn’t contact anyone or seek any kind of medical assistance. I think I just figured it would eventually subside. I knew I would be seeing my radiation oncologist in the morning and would tell her about it then.
A friend came and picked me up early the next morning to take me to my last radiotherapy session. My last appointment was at 8.15am and I figured I’d be back home by 10am and done for the day. When I went outside to meet my friend for the pick-up, I did notice I was quite breathless again and had to hold on to my letterbox while breathing heavily from just walking up the driveway. I was just telling myself I was incredibly unfit!
When I got to my last session, I walked out to the machine and I was breathless, and had my vertigo and double vision going strong. When I hopped up on the machine, I was breathing heavily and as the mask was strapped on to my face, I began to panic that I wasn’t able to breathe in the mask. It was the first time in 10 sessions that I felt anything close to claustrophobic. I thought I might have to put my hand up and wave for help, but I also just wanted to get my last session done without requiring any assistance! Every other session had gone without incident, why change now? Eventually I was able to get some control of my breathing so I could breathe through the mask, but I was breathing much more rapidly than I had in any previous session.
After the session on the machine, I was sent to see the nurses as part of it being my last session. I mentioned to the nurse that I had been breathing really fast and she took my heart rate and it was 133bpm just sitting in a chair. I then went to see the radiation oncologist and told her my new symptoms: the breathing, heart rate, continued and worsening vertigo, continued double vision, increased numbness in left arm from fingertips to mid-bicep, and almost constant pins and needles in chin rather than just numbness.
I was sent off for blood tests, chest x-ray and electrocardiogram (ECG) test to try to find out what was causing the breathlessness. My friend put me in a wheelchair and pushed me all over the hospital to get all the various tests done. It must have been quite a workout for her because I’m not light and we had to cover a lot of ground. I was then sent for a CT chest scan and was told they had found clots on my lungs that were causing the breathlessness. I was sent to my medical oncologist with the warning that she might want to admit me to hospital for a couple of nights to treat them. I was not happy as you know how I feel about spending time in hospital. Fortunately, she was ok with me going home and self-administering twice-daily injections of a blood thinner called Clexane to break up the clots, as long as I had someone at home to look after me.
My Dad had just gone home to the Sunshine Coast for a few days so I had to call him and ask him to come back to Brisbane so I wasn’t home alone and would be allowed to go home. So what I expected to be an hour maximum at the hospital, ended with me getting home about 3pm that afternoon after a gamut of tests and a diagnosis of blood clots on my lungs.
How did I get blood clots? Well, apparently you are more susceptible to developing clots when you have cancer and with my recent whole brain radiotherapy, being less mobile because of the vertigo and eye issues, I unfortunately have developed them.
Don’t feel sorry for me. There are other people who are doing a lot worse and develop far worse side effects than these. I can be grateful for the following things:
- the clots in my lungs are treatable and will disappear
- they didn’t appear before my trip to Pumpkin Island and ruin my holiday for me and my friends
- I didn’t have to be admitted to hospital
- the breathing and heart rate problems were not caused by the tumours in my lungs, nor by the tumour in my brainstem, which regulates the cardiac and respiratory functions.
So the next steps for me are that I start back on chemotherapy on Tuesday, It will be the same combination of Carboplatin and Paclitaxel, which I was on just before the latest brain stuff happened. My last chemo session was on 18 July so it has been a while since I had chemo. We need to see if this combination can get the tumours in my lungs and liver under control, and if it can also penetrate the blood-brain barrier and have some effect on the mets in my brain as well.
I will have an MRI in a few weeks to see what effect the WBRT has had on my brain and from there, we will see if there is anything targeted we can do on some of the bigger lesions in my brain. The WBRT has not knocked me around too much (apart from the unexpected lung clots). I have been pretty tired from it, but no brain confusion, short-term memory loss, nausea or terrible headaches. So I think I’ve got off pretty easily from it.
I will see a palliative care doctor in the next week or so. Don’t panic. Palliative care doctors are brought into things much earlier these days to help coordinate and prepare for things well in advance. Though I did have three appointments with doctors within a week where each of them opened with ‘I’m so sorry’, which is not really what you want to hear. They know this disease and how it progresses for people, but that doesn’t mean it has to be the way it progresses for me.
I’ve finally got around to doing all of those other preparations like having a Will in place (we all should), power of attorney and an advanced health care directive. All fun things to do – NOT. But necessary. I’m also going to get some work done around the house to make my house a little bit safer for me so I can continue living here for as long as possible. I’m getting a handrail put in so I can safely get down the stairs from my garage and laundry, as well as renovating my bathroom to include a safer shower for me to use. Quite boring things to be spending my money on, but it will help me at the moment. I might also see an ophthalmologist if there’s no improvement in my eyes as there might be something else that can be done to manage my double vision. It would be good to be able to see clearly out of two eyes again. I think I would feel much more like myself and be able to be far more independent.