On Sunday 4th August, I had a short course in depression. This was the one really bad day I referred to in my first post. After coming home from hospital the day before, still exhausted from lack of sleep and being physically unwell, I went to bed and had a couple of hours sleep. Apart from tiredness, I felt better than I had for the past few days so I was pretty confident I was over the worst of it. I went to bed early on Saturday night, hoping to wake feeling normal at last.
We have an intercom in our bedroom which we have set up so we can hear our son from his bedroom. I woke to him crying at about 7 am. Physically, I felt pretty good, at long last, but I just didn’t want to get up to him, and I didn’t know why. I had hardly seen him all week because I’d spent so much time in bed and now that I was feeling better, I still didn’t want to get up to him. My husband got up, gave him a bottle and breakfast and then took him for a drive so I could sleep in longer. I stayed in bed with our daughter. I think she had slept in our bed that night.
My sister, Jenni, had offered to dry and straighten my hair in an effort to earn the title of favourite, and because, having hair similar to mine, she knows what an effort it can be. I thought that was a very generous offer. We have come a long way since she told me she hoped my plane crashed when I went overseas in 1997! (For the record, she took it back before I left). I actually managed to wash, dry and straighten my hair. I probably should have stayed up then but I got back into bed with my daughter, as she wanted a cuddle, and I started thinking.
I started thinking about the week and just how hard it had been. It was so much harder than I had expected it to be. I had been so sick that I really just focussed on how awful I felt and wasn’t thinking about anything else. Now that I was feeling physically better, I was able to think about the impact of this cancer. I knew from the start it wasn’t going to be “all about me” (even though I joked that it was). I hated the impact it was having on my family; being so reliant on them because I couldn’t look after my kids, having them see me so sick, having my daughter see me spend days in bed and not being able to take her to school or pick her up, neglecting my son. The emotional side really hit me hard.
I knew it was normal and completely OK to have a bad day like this, but then I started worrying that it wouldn’t just be one day. Maybe that was how I was going to feel for the next six months. Maybe I would not be able to do anything for my children, or worse, I wouldn’t want to. It was awful. I think I almost became catatonic.
I texted my husband to tell him I was having bad day. Jenni also texted to see how I was. I wasn’t keeping anything a secret. I told her I was physically good but emotionally fucked. She said she thought that would happen and offered to come over but I told her I just needed a day of self pity and didn’t want to see anyone. Lisey had posted her Kylie and Delta post the night before, which I had read and thought was beautifully written, as did everyone who read it. Jenni shared it on Facebook and told me her account was going mad with responses. She asked if I wanted to read the responses and I said it might be a good day to read them given I was already fucked up. She sent them through and I think all of them made me cry. They probably would have made me cry even if I was having a good day. The support was quite overwhelming.
Meanwhile, Adam had called to tell me he’d been fined for driving an unregistered car. $700! He had taken my car that morning and was pulled over and told the car wasn’t registered. WTF??!! I had been leasing my car and the registration and insurance were due in late July. I usually paid them myself and got reimbursed by the lease company. For some reason, this year I passed on the invoices to the lease company so they could pay the suppliers directly. I did this in early July. I received an email on Friday 5th July to let me know the payment had been processed. I didn’t read that email properly. On Monday 8th July, I went to see my GP and this whole Hodgkin’s adventure began. I didn’t give my car registration or insurance another thought. When Adam called me to say he’d been fined, I went back and checked my emails. The lease company had only payed the insurance and not the registration! Gotta love the timing.
My husband came home and suggested that I get out of bed and out of the house but I couldn’t be convinced to move. It clearly wasn’t good to have the kids see me so miserable so he took them out for lunch. That gave me uninterrupted time to think about the awful week I’d had, the effect on everyone around me and to worry that I wasn’t just having one bad day. If I was due to have chemotherapy that day, there is absolutely no way I would have gone. I thought I needed ’emergency psychology’ to get me out of the situation I was in. I considered calling upon my resources yet again; a psychologist or a psychiatrist I knew, but in the end I sent a text to Jenni at about 3 pm, telling her that I needed her to come over. She arrived within about 5 or 10 minutes. Little did I know at the time, she was on her way to a friend’s place with her family. She turned around immediately when she received my text. Bloody cancer impacting my family yet again!
Jenni came into my bedroom and I told her everything I’ve just talked about above. She was close to tears herself. My husband arrived back home soon after and this time he wasn’t taking no for an answer. He forced me to get out of bed. I remember my legs feeling like lead. They were so heavy. I went out for a hot chocolate with Jenni. I can’t remember what we talked about but I don’t think it was me or cancer. It was definitely the right thing to do, getting out of the house. It stopped me just lying there thinking and worrying. I felt a lot better when I got home.
Jenni called the chemo ward at hospital to ask their advice as we thought it was definitely time for me to see a psychologist. Third phone call to the chemo ward for the week – not a good start! The nurse she spoke to was very nice, and told her what was happening was completely normal, happens to everyone and doctors are the worst! The nurse called my haematologist who gave her the number of a counsellor and suggested I call her the next day.
Lisey texted that evening just to see how I was going and I filled her in. She was full of good advice, yet again, having probably been where I was herself. She told me I would plummet quickly and recover quickly; it’s the nature of the beast. And of course she was right.
On Monday morning, my husband went in to work late so he could get our daughter off to school. It would seem I couldn’t be trusted! I felt a lot better that morning, not normal, but a huge improvement on the day before. My husband and I both went to school assembly and at 9 am on the dot, Jenni rang and made an appointment for me with the counsellor at 10 am. My husband went off to work, my mum came over to look after the one year old and my sister took me to the hospital to see the counsellor. One person out of action and three people affected!
The counsellor was nice but there were two questions she asked which made me think she wasn’t the one for me. She asked me if I had any spiritual beliefs I could turn to, to help me through this time – no. She also asked if I had faith in my body’s ability to heal itself. I raised an eyebrow and asked “this body that is trying to kill me at the moment?” I do not mean to criticise her at all as seeing her definitely helped. I felt much better having just talked and gotten things off my chest. I knew that the next major hurdle was to get through the next round of chemotherapy, with no maxolon, and if the aftermath wasn’t a repeat of the first round, I would be OK.
By Monday afternoon, I had, as Lisey predicted, bounced back quickly. If I had to have chemotherapy that day I could have faced it, unlike the previous day. I saw my GP later in the week to get a referral to see a psychologist.
(Almost two months on now, I still haven’t made the appointment. I guess that means I haven’t had any more really bad days but I really should get on to it).