Monday October 6th, 2013
I’d only been discharged from hospital the day before and I was back there again for another hit of chemotherapy. I hadn’t seen my haematologist since 26th August as he’d been on holidays. I was looking forward to seeing him so I could ask him what his opinion of the PET scan result was. I was fairly certain it wouldn’t be as overwhelmingly positive as his sympathetic female colleague. Jenni came into the appointment with me. She likes to sit in on them when she can as she finds my haematologist’s lack of sympathy quite entertaining.
I filled him in on what had happened over the last month or so, including the insertion of a PICC line and the recent hospital admissions. I told him I was feeling stupid turning up to hospital and not having a fever and asked him if I should bother coming to hospital if it happened again. His advice was to take some panadol and see if the temperature settled. Quite funny really, as my standard advice when people complain to me about any sort of illness is “take a couple of panadol and have a lie down.” I told him I had really felt quite unwell when I was admitted the second time and that I was surprised I didn’t have a fever in hospital. He said there was nothing sinister on my blood tests.
I then told him about the night sweats and I’m pretty sure that made his ears prick. Hmmm, could that be B symptoms? (In case you’ve forgotten, B symptoms are fevers, night sweats and weight loss in people with lymphoma, and are associated with a slightly worse prognosis). Surely not so soon after a nearly negative PET scan, and I didn’t have B symptoms when I was diagnosed. It was enough for him to get me on the bed and examine me. He felt my neck and abdomen and listened to my chest and reported that everything looked pretty good to him. That was comforting.
I asked him if he’d seen the results of the PET scan and he said he had. I asked him if he thought the results were good and he said “they’re OK”. I then said “you said you expected it to be negative and it wasn’t. What does that mean?” His response was “it’s not worth splitting hairs at this stage”. That was not so comforting. I didn’t really know what he meant by that but for some reason I couldn’t be bothered going in to it.
I asked him if I would be having G-CSF after this round of chemotherapy and he said “No”. I asked him why not, not that I wanted it, I was just interested in his reasoning. He said there was no point stirring up the bone marrow. I wasn’t really sure what the meant but figured I just had to be severely neutropaenic to ‘earn’ the G-CSF, and since I’d had it after the 5th round of chemo, I wasn’t neutropaenic going into this 6th round.
I also asked him if I was actually going to lose all my hair. I was now over 2 months into chemo and although my hair had thinned considerably, I was far from bald, and some of my hair was actually growing. I took my scarf off and showed him how much hair I had. He asked if he’d told me I’d lose my hair and I reminded him that he definitely had. It was pretty much the only side effect of chemotherapy he had been certain about. No mention of nausea or extreme fatigue. Oh, he did also mention the cessation of periods. He conceded that I probably wouldn’t lose all of my hair.
I wasn’t annoyed that I’d shaved my hair, because I had to do that with the amount that was falling out. As strange as it might sound, I was actually a bit disappointed that I wasn’t going to go completely bald. It’s not something many get the opportunity to experience, not that everyone would want to, but if you’re going to lose most of your hair, you might as well lose it all! Also, a lot of people who have lost their hair due to chemotherapy find that it grows back completely differently, like my sister-in-law, whose hair grew back completely straight (I was going to say dead straight but that could be inappropriate). So, I was interested to see how my hair would grow back and I didn’t know if the fact that it hadn’t completely fallen out meant it would just grow back the same. I was hoping for completely straight regrowth but actually thought I might just get another twist of the knife with it growing back grey.
After the appointment with the haematologist, I headed downstairs for chemo number 6. The half way mark. Quite a milestone. Although I didn’t really feel that I would be half way until I got through the effects of chemo, it certainly was a good feeling to be able to start counting down the remaining sessions. I didn’t feel I could do that when I had more ahead of me than behind me.
There was nothing particularly remarkable about session number 6, which is good. No threats of delayed chemo, most importantly. Karine wasn’t there as she’d had her last session a fortnight earlier, and Jenni and I didn’t find a new friend that day.
The after effects of round 6 were fairly kind initially. Wednesday was the worst day, as it usually is, but as far as Wednesday’s go it was pretty good. I dragged myself out of bed before 5 pm and even managed to take my daughter to and from her singing/dancing/acting class, something I usually leave to my mum. I had lovely dinner, cooked by somebody else and went to bed early looking forward to a good nights sleep and the possibility of feeling relatively normal the next day. Unfortunately, that was not to be. I woke up at 4 am and started vomiting! Now I know that nausea and vomiting are pretty standard side effects of chemotherapy, but this hadn’t happened with the previous five sessions, so why was it happening now? Just when it looked like I was going to get off lightly with the after effects!
I didn’t know if the vomiting was due to the chemotherapy or I had just been ‘lucky’ and had a bout of gastro. It didn’t matter really. What I was hoping would be a good Thursday was a day spent in bed feeling completely and utterly drained. Nausea and vomiting is not pleasant at the best of times, but I think when you’ve had chemotherapy and you have virtually no reserve, it hits you even harder.
I think the fortnight after chemo number six was one of the hardest. Perhaps it was cancer’s way of saying “don’t be too excited about being half way through your treatment!” I was completely physically and emotionally exhausted and my catchphrase became “drained is the new normal”. I was feeling guilty about not being able to do things with my 6 year old daughter and because I felt crap, I had no patience and felt like I was constantly yelling at her and telling her off. I felt like she was suffering too and that was not fair. Although having a 20 month old son is bloody hard work when you’re going through chemotherapy (and even when you’re not), the blessing is that they are (hopefully) too young to remember anything. I do feel guilty about neglecting him too, and I’m sure he thinks my mum is him mum at the moment, but he is happy and I’ll make up lost ground in 2014.
Sally (high school friend, member of ‘The Good Tittie Team’) came over on the Saturday to entertain my children, to give both my mum and I a break. The girl is a star and I can not thank her enough! She cleaned up the playroom, brought dinner and entertained a very busy, young boy. By the time she left in the afternoon, I thought I was starting to feel better but then I performed the rather simple tasks of feeding and bathing my son, and I was exhausted. It really was quite frustrating. Cousin Sonya came for a sleep over that night, to catch up and to let me sleep in on Sunday. My darling cousin has been so supportive during this adventure.
I also discovered a new talent in this fortnight. That of making people cry. Well, it’s actually not a new talent if I think about it. From what I have heard, there have been a few tears shed by people reading this blog but I think that was mostly at the start so perhaps I was rediscovering this talent. I took my daughter to swimming on Saturday morning, and a good and honest friend told me I looked like crap. I told her about what had been happening and my physical and emotional exhaustion and I started crying. Then she started crying. On Sunday something else set me off and there were tears again. Sonya also started crying and then Jenni, who had popped in for a cup of tea, started crying too. The three of us were standing in the kitchen crying, so then I started laughing and wanted to take a photo of us all crying.
At the end of an exhausting fortnight, I was feeling like I needed to book some sort of holiday (local of course, because I wasn’t allowed to go overseas). I needed something to look forward to. The problem was, this cancer and the effects of treatment were so unpredictable. I could book something and may not be able to go because I might be in hospital with a non-existent fever, or I could just be so drained that it when it came time to go, I couldn’t be bothered. There just didn’t seem much point.
The fortnight ended on a nice note with my daughter writing a short but beautiful message for me. I felt I’d been so short tempered with her and was neglecting her, but I guess it just proves that a mother’s and daughter’s love is unconditional. Six down, six to go!