Monday 16th December to Sunday 29th December
There was no assembly on Monday 16th December, which meant I could get into hospital earlier and start chemo earlier. It begs the question, ‘why didn’t I just skip assembly and get into hospital early every Monday?’ It’s not like assembly is compulsory for parents, not even for prep parents. Something about a mother’s guilt I think. My daughter wanted me to go and since I was missing a lot of other things with her, it was the least I could do.
I didn’t wake up feeling nauseated which suggested to me that I didn’t have ‘anticipatory nausea’ last time. Maybe it was those prawns. I didn’t have much of an appetite but I wasn’t nauseated. A good start. Now I know some of you are wondering why I used the word nauseated instead of nauseous. Nauseous actually means to make someone feel sick, so if I feel nauseous, I feel like I’m making other people sick. An interesting little tit bit for you.
First stop was the day infusion ward for a blood test and then upstairs to see my haematologist. Jenni came to this appointment too. She loves to sit in and see how little sympathy I get from him. I mentioned that I’d had a cold which I hadn’t been able to shake for the past few weeks. He asked if I’d had any fevers. I said no, my temperature had only been up to 37.6. That hardly qualifies as a fever so I didn’t think he’d bat an eyelid but he actually pulled out his stethoscope and listened to my chest and even looked at my throat, using a ice pole stick to depress my tongue. I can’t remember that last time a doctor did that to me, must have been when I was a child.
He felt my neck for lymph nodes and then moved away to wash his hands. I was sure he hadn’t felt a couple of nodes I had noticed so I pointed them out to him to make sure he felt them. One was about in the middle of the right side of my neck. He felt that and said “yeah, that’s about 1 mm”. The second node was behind the medial (that’s towards the centre of the body) end of my collar bone. He felt that one and said, “yeah, that’s about 1.5 mm”. “Not impressed?” I asked. He shook his head. I had felt that lymph node behind my collar bone a couple of weeks earlier while I was carrying my hand bag over that shoulder. I could only feel it when I was in certain positions (like with a hand bag over my shoulder) so I didn’t know if it had been there all along, or if it had just popped up. I wasn’t itchy and the expert wasn’t impressed so best not to worry about it.
My haematologist had told me very early on that enlarged lymph nodes in the type of lymphoma I have (nodular sclerosing Hodgkin’s lymphoma) may not necessarily disappear with treatment because they contain a lot of scar tissue; so the cancer may go but the scar tissue will remain and the lymph node will remain enlarged. This is one of the reasons for doing a PET scan. You could do a CT scan and that might show enlarged lymph nodes, but you need to the PET scan to determine if the enlarged lymph nodes contain cancer or just scar tissue.
I told him again about my hands and the burning pain I’d been experiencing. It was getting worse but it wasn’t constant. I told him that my hands were very sensitive and things hurt that shouldn’t hurt, like when I touched something rough or a bit spiky, it hurt, and I know that a few months ago it wouldn’t have hurt. My temperature perception was also a bit haywire. Things felt hot that weren’t hot. I gave the example of recently cooking a sausage for my son. I cut it up and gave it to him. He put a bit in his mouth and spat it out so I wondered if it was too hot. I felt a piece and it felt really hot. My daughter picked up the same piece and said it wasn’t hot so I put it in my mouth and it actually wasn’t hot. He asked again about movement/motor function and I said that was OK. He said I had ‘dysaesthaesia’ (that’s a mouthful – it’s a fancy way of saying abnormal sense of touch) and it was due to the vincristine. Since there were no motor problems, he was happy to push on with this drug in my cocktail. He said the dysaesthesia would be reversible (slowly, over months) which was interesting because one of the nurses told me it wouldn’t be.
I also asked him if the G-CSF actually prevented neutropaenia, because I had become a bit slack in my approach to life as neutropaenic person, assuming that I wasn’t actually neutropaenic because of the injection (eating prawns, getting pedicures – only two in five months). He told me that it might prevent neutropaenia or it might just shorten the length of the neutropaenic period. We didn’t really know because I was only having blood tests at the end of the two week cycle.
I told him about how forgetful and vague I’d been at times and told him about an upcoming court case I am supposed to give evidence in at the Supreme Court. I said I didn’t know if I’d actually be sharp enough to give evidence. He talked about chemo brain and how it is a real entity! I was a bit surprised by that. I didn’t think he’d really believe it was real. Due to chemo brain, I can’t actually remember what he said about it but I think he said things should improve once the chemo had finished and I’d just have to see how I was when the court case came around. I’m prepared and have lined up a colleague to give evidence in my place if my cognitive functions don’t improve.
My haematologist then started talking about my PET scan at the end of treatment, which would be 4 weeks after my last chemo. What? 4 weeks? I had assumed it would be 10 days after the last chemo, like the restaging PET scan I’d had after 4 rounds of chemo. 10 days after was good; not only because it meant I would know sooner if I was in remission, but I would also know a few days before my birthday so it could be a double celebration if the scan was negative. 4 weeks after my last chemo would be after my birthday and quite a wait. Bugger!
He asked me what my favourite day of the week was and for some reason I said Thursday. I think I was thinking that at least my son would be in childcare so that would be one less child to have looked after while I was having the scan. But I don’t think there would be any shortage of volunteers to look after children so I can have that PET scan which will potentially signify the end. He looked at his calendar and counted 4 weeks from 30th December (my last chemo!). The closest Thursday was 30th January, so that would be the day. Then Jenni reminded me that that was the first day back at school so it might not be such a good choice of day. Then we decided to forget about my favourite day and just go 4 weeks after 30th December. That would be Monday 27th January – Australia Day public holiday. Right, Tuesday 28th January, 2014, was the day.
He started filling in the paperwork for the PET scan, CT scan and blood tests. I thought he was getting organised early given that this was my second last chemo, and not my last, so I asked him if he would be away for my last round. The answer was yes. Quite deductive for one in the midst of chemo brain. He handed the request forms to me and said he would see me a week after the PET scan. It took a little while for that to register and I don’t think it did until I was at the reception desk making the appointment. See him one week after the PET scan. Did he seriously think I was going to wait one week for the results of that PET scan?
As I left the room he wished me well and said “I’ll see you next year and hopefully that will be the end of this annus horribilis. I didn’t know exactly what that meant as I didn’t study Latin, although you almost study Latin when you study medicine, but I got the idea. I have since looked it up and not surprisingly, it means “horrible year” (not horrible bum as I’m sure some of you may have thought it meant; Sonya, Jenni). It is complementary to “annus mirabilis” which means “wonderful year”. I know there are many out there who would agree that 2013 has been an “annus horribilis” and I for one, am hoping for a “annus mirabilis” in 2014.
I went downstairs to be hooked up to chemo number 11. The neutrophils were fine, of course. The room was crowded as the renovations were still underway. I hoped they’d be finished for my last session. The first thing I did when I got downstairs, was to text my radiologist friend to ask him if he’d be able to look at my PET scan and give me a same day result. There was not a hope in hell I was going to wait a week to find out if all this horrible chemo had done it’s job and I was in remission. I certainly pitied the people that didn’t have the connections I did and had to wait for results.
So, it would appear that I haven’t learnt my lesson, after the stress of thinking I had stage 4 Hodgkin’s lymphoma when I got the results of my very first PET scan from the radiologist, rather than waiting to see my haematologist. But I’ve justified it to myself; this PET scan will either be negative (which would be awesome) or not negative and the degree of not negative is irrelevant to me. It will mean more treatment and I can wait a week to find out what that treatment is.
Chemotherapy was pretty uneventful. Due to the early start, I was done by 2 pm, which was an all time record early finish. The highlight of the day was the fact that Jenni ate my lunch as I didn’t have much of an appetite. I was sure not to miss that opportunity for a photo.
When I got home from chemo, the nausea hit pretty quickly and I went straight to bed. Like most people at this time of year, I had a pretty busy schedule ahead, beginning on Thursday, so I could not afford to be too sick with this round. I spent Tuesday and Wednesday in bed, partly feeling average and partly conserving my energy.
On Thursday I dragged myself out of bed to do some xmas shopping, despite my mum virtually demanding that I rest. I thought if I made myself get out and about, I might feel better. I’m not entirely sure if it worked and I’m sure there’s no scientific evidence to back it, but I made it to Santa’s Magical Kingdom that night with my daughter and the fav sis and her two kids. It was good the fav sis came along as it meant she could be the driver. The kids had a ball and I got through the night, so I would call that a success.
Friday 20th December was the last day of school. My daughter had begged me to have her friend’s over for a xmas pool party. Initially I said no, because it was not in my ‘good week’, but then I thought, she had missed out on having friends over for a good part of the year (although there was no shortage of play dates for her at her friend’s houses) due to me being sick, and it probably hadn’t been a very fun year for her, so I decided I’d just suck it up and let her have her xmas pool party. I think there were 10 kids there and apart from one bee sting and one near drowning due to someone not realising they didn’t have their floaties on (with a heroic save from an observant mum who dived in the pool in a split second), I’d say that day was a success too.
And because I didn’t put these photos on Facebook, I thought I should show off the xmas themed food that we made here. Thank you Kate for the inspiration!
On Saturday morning, I had to go out and get the obligatory Santa photo with the children. As you will see, one of them was quite happy with that but the other one wasn’t! He was giving Santa high fives until he was placed on his knee.
After the Santa photo, it was home for lunch with a friend and her three children. When they left, I headed to a friends place for a Christmas dinner with a small group of close friends. I hadn’t committed to going to that as I wasn’t sure how I’d be feeling so I was glad I made it there. Things were going along fine. I was feeling pretty good, I was eating, the kids were having fun. Dinner was served and my sister had made her renowned pomegranate salad. I ate some of that and told her it didn’t taste right, there was something missing (we are very honest with each other). We then decided it was probably my f’d up taste buds from the chemo.
Quite suddenly, I started feeling unwell. I wasn’t sure if I was going to vomit but I just felt unwell. I went inside to the toilet but I didn’t vomit. I went back outside to the table and one of my friends was asking me questions but I could hardly answer them. Then another friend asked if I was OK and said I looked like I’d hit a wall. I said I wasn’t feeling well and would go home. I then felt even more unwell and proceeded into the back yard (because I didn’t think I would make it to the toilet) and vomited! What a lovely dinner guest, vomiting in the back yard. This may be too much information for some, but I am told this makes the story; the dogs ate my vomit, which was quite fortunate really as it was rather large!
I agreed it probably wasn’t wise to drive myself home, especially because my son would be in the car too (my social butterfly daughter was staying for the party), so the fav sis drove me home after calling our mum who was enjoying a night at her own home, to summons her back to my house to look after my son, and return the fav sis to the party. Once again, so many people inconvenienced by this bloody cancer.
I went to bed when I got home, where I began to feel freezing cold and started shaking/shivering uncontrollably and my temperature went up to 38.1°C, but being the complacent rebellious cancer patient that I am, I didn’t ring the hospital. I popped a couple of panadol and hoped it went down, and it did. I really have no idea what that was all about. Perhaps someone was trying to tell me to slow down! Well to that person, I say “fuck you” and “fuck cancer!”, especially because this is the dessert spread I missed out on!
On Sunday I had that very familiar feeling of being completely drained. It was a simple vomit but I found that I had just had no reserve and little things easily took their toll on me. It would have been easy to spend the day in bed, which is what most people suggested I do, but there was a shopping event on at the retail store one of the members of ‘The Good Tittie Team’ works at, to raise money for the team. Between 12 and 3 pm, 20% of all sales would be donated to our team! So, I simply had to go. I was only planning to go for about 15 minutes, but 2 hours and $300 later I finally left, only to find out that I had missed Hugh Jackman by a matter of minutes!! Unbelievable. His wife and mother (or her mother, not sure which one) made a purchase and supported our team, so we might as well say Hugh Jackman supported our team and put his name on our Tshirts as a sponsor. What do you think?
Well, that was the end of a rather busy post chemo week with an abundance of social events. Despite attempts to foil my plans, I was rather pleased that I made it to every one of those events.
The next week, being the week of Christmas, was also very busy, but it was my ‘good week’ so all was well. Monday and Tuesday were spent getting ready for xmas lunch at my house on Wednesday. Everyone was assigned tasks and a lovely day was had by all. Special mention must go to my sister-in-law, Amanda (member of ‘The Good Tittie Team’, breast cancer arse kicker) for her delicious ham. I think she had now earnt herself that job every year.
Boxing Day was the wog Christmas get together, hosted by fav sis, and instrumented, as always, by the President. She got a sticker on her car that day (The President), you know those car stickers I have referred to several times, yet still not a single order has been placed by blog readers. You can order them at http://www.myracecarsticker.com.au and you can have what ever you want on your sticker! I really thought F#*K CANCER would take off.
Friday and the weekend were pretty cruisey. My daughter went to her cousins birthday party on Saturday and came home with a scar to match mine. Funny, cute, thoughtful and supportive all in one.
The LAST round of chemo was not far away.