So Friday afternoon I went home. We got an uber. When I got home, there was this incredible collection of gifts waiting for me on the dining room table from my amazing housemate Owen and his girlfriend. Best welcome home present ever.
As well as moisturisers, body butter and masks (I have been loving these!), an Amazon voucher for my Kindle, mustard (I’m obsessed), and Anzac biscuits and my favourite Australian ginger beer, there were also the most snuggly pyjama bottoms and a top which I practically lived in for days after I got home. They were so comforting and incredible. Absolutely incredible! I felt very loved, supported and happy. Over and over I get reminded of how wonderful the people around me are and how lucky I am to have them.
I was exhausted when I got home, naturally. So I slept. Well, I tried to sleep. For the past few years I’ve had back and shoulder problems, I think it’s fibromyalgia, I had been trying to work it all out before this cancer stuff happened. I presume this was the root of my problems, because google told me that chemo can make myalgia worse (muscle pain). But basically I couldn’t lie down or sit on a chair with a back for more than about 10 minutes without being in a lot of pain.
Charlie’s bed was a bit softer than mine so we moved into there but it didn’t make a lot of difference. For about a week after I finished chemo I didn’t sleep more than a couple of hours on a good night, and about 10minutes on my worst night.
This was tiring. And painful.
On Saturday I had one of my besties coming to stay from Australia for a month. Not the best circumstances of course and we had a lot more things planned, but having her around for that first week was amazing. She was great. Though I couldn’t do much on my first few days but it was still great to catch up and hang out.
On the Sunday I was starting to feel a bit better. We went out for brunch and then later for a pub dinner (roasts all around). My heart was almost beating out of my chest when we were walking up the hill to dinner. So we wandered very slowly. It calmed down a bit over dinner but after the walk home it was racing again. When it came to bed time the pain in my back and sides was verging on unbearable.
And all I had to take was paracetamol. I suddenly thought hey, ibuprofen would probably be better than paracetamol, and they hadn’t told me I shouldn’t have it.
I didn’t sleep all night. The pain didn’t stop. I also had terrible reflux every time I lay down and my heart was racing. It never stopped. And it didn’t stop the whole next day. I was a lot I emailed my nurse for something for the reflux. She said ‘oh, you definitely can’t have any ibuprofen’. Great. Thanks. At one point the pain in my chest was so bad I called the advice helpline (the lady I spoke to was lovely). But no one seemed too bothered. So I tried to get some sleep that night (Monday), and managed to get about 6 hours (I was exhausted by this point), and hoped when I woke up I would feel better.
But I woke up on Tuesday morning with burning pain in my chest and back. My heart was racing, I was still exhausted, had difficulty breathing, and even just a few steps would have me clutching at my chest in pain. I sent an email to my nurse and asked if she could get them to check my blood pressure when I went to my doctor’s to pick up my reflux prescription, just to be sure. She called me back and said I needed to go to A&E (Emergency Department at the hospital for all non Brits playing along at home) for some tests. So my friend Ange and I got ready and headed down (Charlie was out of town for work, so I was so lucky to have Ange around!!) – just to my local hospital down the road, not all the way in to my cancer hospital. I could hardly walk more than a few steps without needing to stop.
My nurse rang ahead, and they admitted me immediately and got me into a bed. They took blood and then sent results to my doctor to confer, which was great. Taking the blood hurt my chest so much (i.e. PICC line again). She was pulling it out of me so forcefully, it was not very nice. But she succeeded eventually and the pain subsided after. I also met the oncologist at my local hospital.
They gave me a chest X-ray to check the PICC line was ok and a lung scan to make sure I wasn’t having an embolism. I also had men wheeling me around to all my scans because I couldn’t walk very far. That was fun. Ange came along with me to each scan to carry my things. Once again, grateful.
Unfortunately they had to give me a cannula for the lung scan. The nurse managed to get it in the first time (brilliant), but as always I was in loads of pain from the needle in my vein and the whole thing makes me a bit panicky these days. They also hooked me up to some liquid but didn’t tell me what it was, which was stressful. I was feeling quite nauseous and felt like I was burning up. So Ange was great and pulled out my thermometer for me to check my temperature. Fine, of course. She also checked what they were putting in me – paracetamol. That’s fun (but seriously please tell me what you’re putting in me!)
Next I went for the lung scan. I had to breathe in radiation from a tube for four minutes, plus hold my nose, plus hold the tube. Difficult considering I was out of breath and my arm was sore from the cannula. But I managed to do it. And super well! She said it would take around 15-20 mins, then they would inject me with something, and then it would take another 15-20 minutes. But apparently I breathed so well and my body took up the radiation brilliantly so it only took 12 minutes each time! I sent Ange off to get some coffee and then she came back up and met me at the end. She also brought some Galaxy chocolate for us to share which I think was the most delicious chocolate I have ever eaten (we were hungry).
We went downstairs and waited for the results – all clear! No one knew why I was having these issues (slightly worrying but whatever) so we went home. It felt good to be checked and get the ok. We slowly slowly walked back up the hill. The ever lovely Ange went out and got us all our favourite snacks and we ate them along with roasted broccoli and hummus. It was a good end to a big day!
Over the next few days I started to feel a bit better and by Thursday I was finally getting some sleep and the pain was subsiding. Definitely on the mend. We enjoyed discussing how I was so much better each day.
It’s good to know that they were onto it all so quickly and were happy to check everything out and do some tests. It’s all so unknown at first.