A quick bit of housekeeping first. A few people have told me they think they’ve missed a few posts so I’ve now numbered them all to make it a bit easier to follow, as there have been quite a few. This is number 42! Someone also asked me if I really thought I had the good cancer! Clearly they haven’t read the first post. If you’re reading this blog for the first time or you’ve joined some time down the track, the most recent post is at the top and you need to scroll all the way down to the bottom, a very long way, to start from the beginning, or click on a month under ‘blog post archives’ to see all the posts for that month, again in reverse order.
Monday 18th November to Sunday 1st December, 2013
Just when I thought things were getting a bit boring, there was a bit of excitement thrown in to round 9. The day started like any other chemo Monday; taking my daughter to school, staying for assembly and then returning home to meet Jenni for the drive into hospital.
I had my usual pre-chemo appointment with my haematologist and this one commenced with him saying “two thirds of the way there”. He was right. At that point I was two thirds of the way through treatment. People constantly tell me “another one down” on the Monday I have chemo, or on the Sunday before, and whilst it is technically correct if you’re referring to the chemo infusions, I don’t really cross it off as done until I’ve come through the other side of the effects of the chemo. That’s just the way I look at it. The chemo infusion is the easy bit. The side effects are the hard part. Every time I’m bed bound feeling like crap after chemo, I say to myself “only three more times (or whatever the number may be) I have to do this”. I don’t get annoyed with the people who say “another one down” on the Monday. I just see it differently.
What I did get slightly annoyed about at this point in my adventure, was when people said “Wow, that’s gone quickly” when I told them I’d had eight rounds of chemo and had four to go. Yes, time may have gone quickly for those who had not been hooked up to chemo every second Monday since the end of July and spent a good part of the next week in bed with no energy to do anything, and endured all the other pleasantries associated with cancer, but it most certainly had not gone quickly for me. I suspect it hadn’t gone quickly for the fav sis, my mum or my daughter either. As I said, I was only slightly annoyed as this comment elicited a look and a raised eyebrow from me which led those who said it to quickly reconsider their statement and understand that time probably hadn’t gone quickly for me.
I have digressed again. Back to the appointment with the haematologist. It was at this appointment that I finally remembered to tell him about my skin. For months I’d had patches of dry skin and areas that I described as looking like pigmented stretch marks. I had a lot on my left shoulder and underarm area extending onto my breast and also some over my abdomen. They were not pretty, but in the grand scheme of things, I was not too bothered. When you’ve got away with a 3 cm surgical scar, you can’t complain too much about other skin changes. He told me these skin changes were very common and reassured me they would go when I finished chemo. Time will tell if he is right.
I also asked him a lot of questions about G-CSF (Neulasta – the injection to increase neutrophils) as I’d been told what I thought were some strange things by one of the nurses, like “G-CSF kills the chemo”. Logic and the ongoing side effects of chemo after the injection told me that one was not true.
He asked me about my mouth and if I had any ulcers. I didn’t but the fact he was asking made me wonder if I should be getting them now and if it was something I had to look forward to.
I mentioned an intermittent burning pain I’d developed in my hands since the last round of chemo. I knew this was a side effect of chemotherapy – peripheral neuropathy, but I didn’t know if it meant the culprit drug needed to be removed from my chemo cocktail. The pain was intermittent and the motor function (the movement) of my hands was still OK so he wasn’t concerned. Then again, he doesn’t get concerned about much!
I also asked him if there was any chance I would need more than 12 rounds of chemo. His answer was “probably not”. That was not the definite answer I was looking for. I suggested that he might want to hide under his desk if the time came that he needed to tell me I needed just a few more rounds of chemotherapy. I think I asked that question because the end was in sight, and I wanted to be certain that it really was the end.
So, what was the excitement in round 9? After the appointment with my haematologist, I headed down to the hospital reception desk to sign myself in to hospital as I get admitted as a day patient for chemotherapy. I told the receptionist my name, although she probably knew it by now, and she looked through her very small pile of paperwork. The conversation then went something like this.
- Receptionist: There’s nothing here for you. You’re not having chemotherapy today.
- Me: Yes, I am.
- Receptionist: No, there’s no paperwork here for you. The chemo ward is closed today for renovations. You’re not having chemotherapy today.
- Me: Yes, I am.
- Receptionist: There are a few patients having their chemo on the oncology ward today but they’ve already come in so you’re not one of them. You’re not having chemotherapy today.
- Me: Yes, I am.
- Receptionist: I’ll call the Director of Nursing.
I sat down in the waiting area and thought I’d check my appointment card so I could prove to the Director of Nursing that I was supposed to be having chemo today! I always have chemo on Mondays! If my chemo wasn’t delayed when I had neutrophils of 0.3, it sure as hell wasn’t going to be delayed by renovations!
So, what did my appointment card say? 19th November, tomorrow! Not 18th November which is what it should have said. WTF?! I remember the nurse handing the appointment card to me at my last chemo session and saying “your appointment is at 10:30”. No mention of the day. Was it a mistake that she’d booked me in for Tuesday? Surely, if I’d had 8 rounds of chemo on a Monday and round 9 was going to be on a Tuesday, you’d point that out, especially to someone with chemo brain! Oh well, I was there and I was going to get my chemo. I was beginning to feel like a drug addict again.
The Director of Nursing came and I was ready for a fight, but she was very pleasant. She was very apologetic and told me they’d made a mistake and I was booked in for Tuesday. I pretended to be surprised, but made it clear that I always had my chemo on Monday and I was determined to have my chemo that day! She told me that she would see what she could do and she would have to check with pharmacy as one of my chemo drugs was made up on the day I had chemo and since I wasn’t booked in, it hadn’t been made up. I knew that was actually true. The good old dacarbazine, the one that caused all my vein problems and led to me having a PICC line inserted, was made up on the day of infusion.
I waited for her return, wondering if she would actually come through with the goods and thinking about how annoyed I’d be to have chemo delayed by renovations when it is supposedly so important not to have any delays in the treatment of Hodgkin’s lymphoma. It would delay the post chemo fatigue and other symptoms, only by a day, but it would annoy me.
She came back about 10 minutes later and told me I could have chemo that day but that it wouldn’t be until the afternoon, at about 4 pm, because pharmacy had to make the drug up. She said she had called in a nurse to give me the chemo and it would be given on the oncology ward. My own, private nurse. Wasn’t I getting special treatment? I was ‘happy’ with that, I just wanted to have that chemo over and done with and did not want to wait another day for it. It was a nice day that day so going home to enjoy a bit of sunshine before chemo was not such a bad thing. I suggested I have a blood test first so there wold be no further delays when I came back and I could be hooked up to chemo straight away, assuming those neutrophils were behaving. I went to the ward, had the blood test, and then headed home to enjoy some sunshine.
When I got home, I sat outside by the pool (I couldn’t go in the pool because of my friend, the PICC line) in the sun. I ate some lunch, sent a few texts and emails, and basically just relaxed. I got a phone call just after 3 pm to tell my the drug was ready so I could head back in as soon as I could. My mum dropped me off at the hospital. No chemo buddy for me this time. Everything ran very smoothly. I had a private room with a private nurse. There was space. No trolleys banging into each other like in the chemo ward; hence the need for the renovation. This room had a bed rather than a gold class chair and what I did notice was that this bed was very comfortable, unlike the beds I’d had the pleasure of trying to sleep in during my previous three hospital admissions. This one had an air mattress and it was comfortable! I was hoping there wouldn’t be another hospital admission before the end of treatment but if there was I’d be requesting a bed with an air mattress!
My private nurse was lovely. She fully understood the flow on effects of a delay in chemo, even if only one day. The chemo infusion started at about 4 pm and was finished by about 7:30. I then had the dressing on my PICC line changed and Jenni picked me up at 8 pm, accompanied by my daughter, as she likes to visit me in hospital. She got to see the PICC line being dressed and she was very happy about that as she wanted to see what it actually looked like. Inquistive mind.
The aftermath of chemotherapy was fairly standard. I spent Tuesday, Wednesday and Thursday in bed with a complete lack of energy. The nausea was worse this time and I was popping those Zofran wafers. Fortunately they did the job and there was no vomiting. I also had a lot of muscle aches and pains this time too. There was no bone pain from the G-CSF, just flu-like muscle aches and pains. I recall at one point telling someone that I felt like I’d been run over by a truck, but fortunately it only lasted a day or two.
By Friday, I dragged myself out of bed and caught up with a couple of high school friends I haven’t seen for many years. We have reacquainted ourselves thanks to good old Facebook! Sally, another high school friend who has had several mentions because she is such a good friend, came over on the Saturday to entertain my children and allow me to relax. Ev even popped in too. I hadn’t written the ode to Ev at that stage so I think he was just making sure he got another mention.
The second week, the ‘good week’, was quite smooth. I was supposed to go to a helpers morning tea at my daughter’s school on the Tuesday. I had RSVP’d and said I would go, had joked about it on Facebook, I think I might have even put the notice on the fridge. Tuesday came and went and then on Thursday, I suddenly thought, “Oh shit, I forgot to go to the morning tea”. I have definitely got chemo brain!
Friday night was the pathologists Christmas dinner for my work. Luckily my colleague, Sarah, had organised this in my ‘good week’ so I could go. She even gave me a bed at her place so I didn’t have to drive home tired, from the city, and sent me on my way the following morning with a bag full of home cooked treats! On the way into the city, I called in to Hat House to buy some more scarves. I had one favourite style and I only had one scarf in that style so I was getting a bit sick of it and I needed a bit of variety in the colours. It was a quick visit, unlike the first one, as I knew exactly what I wanted. I got another three scarves in my favourite style.
It was good to catch up with all my colleagues at dinner in a relaxed atmosphere. Only two people asked when I was coming back to work. They didn’t get a straight answer because I didn’t know. It all depended on the results of the PET scan at the end of treatment, which I was assuming would be in mid-January. The topic of conversation for the night, conversation with me anyway, seemed to be hair loss. The men in particular seemed to be very intrigued about where hair loss due to chemotherapy occurred. Was it a dumb question? Probably not. I remember being told at university that there are no dumb questions. I was told that if you are wondering about something, chances are a lot of other people in the room are wondering the same thing.
So given that a lot of males at that dinner were wondering about hair loss, specifically whether pubic hair was affected, I assume a lot of people reading this blog are wondering the same thing. So, I will answer that burning question. Yes, you do lose pubic hair. The degree of hair loss is different with every chemotherapy regime and some people may lose more hair than others with the same regime. I haven’t lost all the hair on my head, although it has thinned considerably. The same goes for my pubic hair. Ripped off! I can’t believe I am discussing my pubic hair in a blog!
I can’t end this post on that note so I will end with Uncle Max (also known as Uncle Fucker) and his efforts to raise money for ‘The Good Tittie Team’. Uncle Max had a garage sale at his home and raised over $600. He put up a sign with a photo of me, and explained that he was donating all the money from the garage sale to the weekend to end women’s cancers so that he can walk alongside me in March. Some people simply donated money to the cause without making a purchase at his garage sale. Nice one Uncle Max!