Tuesday 18th to Friday 28th February, 2014
This is the bit where you find out how I was slammed by IVAC. Things went downhill pretty quickly after I got home from hospital. I was so looking forward to a good nights sleep in my own bed. I thought that would make the world of difference after a week of very little sleep, and I thought I would wake up feeling a bit more energetic. Not so.
I think I slept pretty well on the Monday night but on Tuesday I woke up feeling utterly exhausted. I was worn out and short of breath just getting up to go to the toilet (about 3 metres away from my bed) and having a shower felt like running a marathon (not that I ever have or will run a marathon, but I’m sure that’s how it feels). I was barely eating or drinking, although my mum always made sure there was a drink beside me and did her best to force me to drink it. I weighed myself and I’d lost 5 kg in about 10 days. Bloody effective weight loss program but I wouldn’t recommend it. The rash I had developed in hospital was getting worse and was starting to get a bit itchy.
On Wednesday, I felt even worse. If I had to describe how I felt, the word that came to mind was ‘broken’. I have never felt so completely drained and exhausted. If I could have stayed in bed all day, I would have, but I had to get up and leave the house to go into hospital for a blood test. All I can say, is thank God I didn’t have to go to the city and could go to the local private hospital which was 10 minutes away. I really don’t know if I could have made it into the city.
I was so sure I would need a blood transfusion that day and I was looking forward to it as I thought it might make me feel better. My mum and dad drove me in and I staggered around to the day infusion ward, the place I had received 6 months of chemotherapy that didn’t work. The nurses noticed immediately that I looked like crap and put me straight into a chair. They took some obs and other than a ridiculously elevated heart rate of 140 beats per minute, they were fine. Blood was taken from my Hickman line and sent off to pathology. The nurse who took it was pretty sure I’d need a blood transfusion too. She decided to give me a litre of intravenous fluid while we were waiting for the results because she thought I looked very dehydrated.
While I was there, my old haematologist (the unsympathetic one) came down to the day infusion ward to see his patients who were there. He asked if I was having fun. Ummm, no! I took the opportunity to show him my rash and asked him if he thought it was due to the cytarabine, as that can cause a rash. His response; “Yeah, but it’s pretty mild”. Such a hard arse.
The results came back and my Haemoglobin was 93 (normal for a female is 115 to 116). 93 is low but not low enough to require a blood transfusion. When the nurse told me the result I just said, “I don’t believe it, it must be wrong”. How the hell could I feel so completely drained, exhausted, short of breath and have a heart rate of 140 if I didn’t need a blood transfusion? I thought she either hadn’t drawn enough blood out of my Hickman line to discard before taking the blood for the blood test or I was so dehydrated that my haemoglobin was artificially elevated due to haemoconcentration. I will attempt to explain that for the non-medical readers. Imagine a glass of cordial. The cordial is the haemoglobin and the water is the rest of the fluid in the blood stream. If there’s not much water in the glass (dehydrated), the concentration of the cordial will be strong (high haemoglobin). If you add water, that will dilute the cordial so the concentration will be lower (low haemoglobin). So I figured if they gave me some intravenous fluid, which I needed because I was dehydrated, that would dilute or lower the haemoglobin to a more realistic value.
I can’t remember my platelet count but it was low, maybe in the 20’s. Normal is 150-400 so mine was pretty low but not low enough to need a transfusion. I was also neutropaenic so I scored an injection of G-CSF, my old friend. When the intravenous fluid finished, the nurse offered to repeat the blood test to see what my haemoglobin was but I felt a bit better and couldn’t be bothered waiting around any longer. I just wanted to go home and go to bed. She did my obs again and my heart rate was up to 140 again so she called the doctor but she didn’t appear to be concerned. It was pretty apparent that I wasn’t going to be going to any conference in the city on Friday so my follow-up appointment in the city hospital was cancelled and changed to the local hospital I was currently at. Then, I was on my way home and back to bed.
On Thursday, I felt much the same – drained and short of breath going to the toilet, so it was another day in bed. My good friend and ex-work colleague, Moggy, who now lives about 4 hours away, came to stay for a few days to help out with entertaining the children and driving me around. I think she was pretty shocked by how crap I looked and how hard this chemo had hit me. In happier days, we’d been on a couple of holidays to Bali together. They were the good old days, pre-cancer. When she fell pregnant with her first child about seven weeks after I fell pregnant with my second, I joked that she was copying me and wanted to be me. Well, I’m pretty sure she doesn’t want to be me now.
The one disappointing thing about Moggy’s visit was that we missed out on a photo opportunity so she could appear pictorially in the blog! Next time. There have been a lot of missed opportunities on this adventure so I just have to fill in the spaces with words.
Moggy drove me to my appointment for blood tests etc on Friday and spent the day with me while I received two units of blood and a unit of platelets. I think my haemoglobin was in the low 80’s and my platelet count was 7. I’m pretty sure my neutrophil count was zero too. I remember scratching myself the night before, as my rash was quite itchy, and I started bleeding, just in one tiny spot, but it would not stop bleeding. So I was not at all surprised by the need for a platelet transfusion. The pathology conference I had registered for went from Friday to Sunday. Even if I’d felt up to going on Friday, the transfusions I needed would have made that impossible as they took most of the day. I still thought I might go on Saturday if I woke up feeling better after the transfusions.
By that Friday my rash had got much worse. It was dark red and becoming quite confluent. The nurses were quite shocked by it as they’d never seen anything like it. If only my old haematologist had popped down that day. I might have even got some sympathy.
The blood transfusions didn’t give me the energy boost I was hoping for. When I woke up on Saturday the thought of even packing a suitcase (I had a hotel booked in the city) to go to the conference seemed too much so attending the conference was out of the question. My hair started falling out in big clumps that day. I had been pulling at it every day, wondering when it was going to start falling out. Only the day before it seemed to be firmly attached. My hair was about the same length as my dog’s hair and was making a real mess so as soon it started falling out, I asked Jenni to come over and shave it off. My daughter even got involved with the shaving this time.
I’d been feeling the lymph nodes in my neck just about every day since I started IVAC, waiting hopefully for them to melt away. They didn’t change while I was in hospital and they probably weren’t expected to, but I was put on that medication, allopurinol, which I’d been put on when I first started ABVD. It is given to prevent tumour lysis syndrome which can occur when there is death of a large number of cancer cells, usually at the commencement of chemotherapy. Again, I’d been told I had small volume disease but again I’d been put on this medication. So I figured maybe the lymph nodes should disappear pretty quickly if the treatment was working. I didn’t ask the Professor that question when I was in hospital, just in case the answer was yes. I kept feeling my lymph nodes when I got home from hospital, and initially they actually got bigger! I didn’t panic though, as some other lymph nodes in my neck that I knew didn’t have lymphoma in them also got bigger. Maybe it was just inflammation from those cancer cells having their butts whipped; that’s what I hoped anyway. A few days later, I can’t remember exactly when, the lymphomatous lymph nodes did start to melt away. I think they were almost gone, or maybe even completely gone, by the time I was ready to be slammed with IVAC again. I was very grateful for that. I couldn’t imagine suffering through that chemotherapy and it not working. But that does happen to some people. Soul destroying.
The next thing on the agenda was Barb’s funeral on Monday 24th February. I was really hoping I would be well enough to attend but the way I felt over the weekend, I really wasn’t sure if I would make it. It would have been easy to spend the day in bed but I did feel marginally better so I rested in the morning and cousin Sonya picked me up in the early afternoon. A few days earlier I had been given a beautiful gift that elicited tears when it was given to me.
I wore the necklace with pride to Barb’s funeral. It really meant a lot to me that her family had chosen to give it to me. The service was very sad, but beautiful, and was attended by an enormous number of people wishing to pay their respects to such a lovely lady, and to show their support to her family. Barb’s granddaughter, Daisy, showed amazing strength, getting up to sing ‘In the arms of an angel’ without faltering. Jenni read a letter she had written to Barb several weeks before she died and her son, Brendan, delivered a heartfelt eulogy. Another granddaughter, Ruby, also did a touching reading. There wasn’t a dry eye in the house during all of this. It was a fitting farewell to a beautiful person loved by so many.
During the service, seeing the heartbreak around the room, especially amongst those closest to Barb, I couldn’t help wondering if it would be my funeral next, and my devastated family and friends looking up at my coffin, asking why I’d been taken so young. I had to push those thoughts aside though, as the day wasn’t about me (although I did get a mention in Brendan’s eulogy). My daughter, who is 6, had met Barb a few times and asked me if she could come to the funeral. I don’t think she really understood death and what a funeral was and I didn’t really think it was appropriate for her to go. The thought did cross my mind however, that maybe I should let her go so that my funeral wouldn’t be the first one she attended.
After the service, a lady came and spoke to me about my cancer. When I told her I had Hodgkin’s lymphoma, she told me I was “lucky” I had a curable cancer. I could feel my friends who were beside me, go tense and hold their breath, wondering how I was going to respond. I bit my tongue and said nothing. A funeral was certainly not the place to let rip with all the reasons I didn’t feel lucky.
I just need to add one more thing about Barb. In my last post, I mentioned how Jenni and Brendan had tried to get her to say “Fuck you cancer”, but being the lady that she is, she refused. I also mentioned that although her death was supposedly expected, it was expected in a timeframe of weeks or months. In the end she went very suddenly and unexpectedly. I think that was her way of saying “Fuck you cancer”. She went on her terms, with dignity and didn’t allow cancer to call the shots.
When I woke up on Tuesday, it was like somebody had flicked a switch and I almost felt normal. Well, it was probably far from normal, but I felt comparatively great. I even put some makeup on for my trip into hospital for blood tests and the nurses commented that I had colour and looked so much healthier than I had on previous visits. Blood was taken from my Hickman line and I was again given a top up of a litre of fluid while waiting for the results.
I had some very special visitors that day. Yeliena, a fellow forensic pathologist and member of ‘The Good Tittie Team’, and Eve. Eve is the Events and Sponsorship Manager of the Royal College of Pathologists of Australasia (RCPA); the college I am a fellow of. Among many many other things, Eve organises the annual Pathology Update Conference; the conference I had been planning to attend on the weekend. I had met Eve, or at least had spoken to her, at this conference in previous years. I’m sure she didn’t remember me but I knew who she was. I can’t recall exactly when I became aware, maybe late last year or early this year, that Eve had also had an adventure with Hodgkin’s lymphoma. When she found out I had it, she commented on my blog, called, texted and emailed. She wasn’t stalking me, she was just desperate to get in touch with me to lend her support, as she knew exactly what I was going through. As she said, there is a special bond between people with or who have had cancer, especially between those with the same cancer.
I’d had a lot of contact with Eve leading up to the hospital visit, as we had hoped to catch up with each other at the conference (she is from Sydney so was in Melbourne for a few days only). I think I provided her with daily updates of my condition and my hopes to be able to attend, but by Saturday it was clear that it wasn’t going to happen. She said she would sort something out and come to see me and Tuesday was the day. She lined up Yeliena to be her chauffeur and they made the trip to see me, probably about an hour away. Both her and Yeliena were surprised at how well I looked. I was surprised at how well I felt; like I said, it was like someone had flicked a switch.
Eve is a very unique kind of person. Very funny and straight to the point. She doesn’t take any crap from anyone and if she wants something or if you want something done and she can help, she’s on to it immediately. No mucking around. She’s quite crazy really, in a good kind of way. I don’t think she’ll mind me calling her crazy and if she does mind, she will let me know! When Eve arrived she said hello and quickly got updated on my situation and then she was off to get some food as she didn’t want me starving. She wanted to know how she could join the club of calling each other by surnames, as that’s what a lot of us do at work; I don’t actually know how or why that started, but we do. So she became a member of that club immediately and we now pretty much only call each other our surnames. If she calls me Melissa, I know it’s serious.
Like me, Eve likes to joke about being the centre of attention so she made sure she’d get a mention in my blog when I got back to writing. We decided we had better take a photo to put in the blog so we asked a nurse to take a photo of us all.
So to Eve, I say thank you. Not just for visiting me that day, but for everything. She has constantly kept in contact, mostly to ask when I am going to blog about her – no that’s a joke, although she has asked a few times. She has been an overwhelmingly wonderful support and has also been very useful with her contacts! Many of you may have read the article about me in ePathWay, the online magazine for the Royal College of Pathologists of Australasia (RCPA). That was of course, facilitated by Eve. If you haven’t read the article, you can read it here. You’ll just have to scroll down to the fourth story.
There will be many more mentions of Eve in the posts ahead (but no accompanying photos) but I hope this blog debut has been worth the wait for her. Eve recently marked 4 years of kicking Hodgkin’s butt (or was she just “lucky” and got the good version of the good cancer?). Either way, she endured some tough treatment; she achieved remission, and has stayed there, after first line treatment with some ABVD and BEACOPP (maybe I should have tried that). It was a tough gig but she got through it and now she’s giving something back. She’s on the board of the Prince of Wales Hospital Foundation, she’s a volunteer for Lymphoma Australia AND she’s a consumer representative on the Quality and Clinical Effectiveness Advisory Committee for the Cancer Institute of NSW. And then there’s that full-time job with the RCPA I mentioned. You’d have to be a little bit crazy to fit all that in your life! She’s a pretty special kind of person. Given my competitive nature, I’m now going to have to try to get on more boards and be a volunteer for more organisations than Eve! But first, there are bigger fish for me to fry.
Oh, I forgot to mention the results of the blood tests. I can’t remember numbers but they were all fine (for someone with cancer) – no need for blood and platelet transfusions and my neutrophils were back over 0.5. My haematologist came to see me and she said that my blood counts had started to recover, I would be back in hospital next week for the next cycle of chemotherapy. The results of blood tests on Friday would determine if that would be earlier or later in the week.
Over the next few days, I felt a little bit better each day, which was very fortunate, as ‘The Weekend to End Women’s Cancers’ was that weekend. It had been looking like I wouldn’t even be well enough to turn up to the event, but when I started feeling better, I knew I’d be there, I just wouldn’t be walking 60 km. The next few days were spent making sure every member of our team raised the $2000 required to allow them to walk. We all got there in the end and we were the highest fundraising team to have all their members qualify. Most people in our team chose to stay in the provided tents on the Saturday night. I hadn’t been too keen on that idea. My camping days ended after spending 46 days in a tent around Europe on a Contiki tour in 1997. Still having cancer was my green light to book a hotel. I booked it for the Friday night too as there was a very early start on Saturday and a team dinner in the city on the Friday night. I also had to go to hospital on Friday for more blood tests. Again I can’t remember the results but my counts were stable so I didn’t need any transfusions. A few people had expressed concern about me going to ‘The Weekend’ as it was going to be a very crowded place and perhaps not ideal for someone with a compromised immune system. I was quite confident my neutrophil count would be OK as I’d had some pretty decent bone pain from the G-CSF injection. My neutrophil count was 16.1 (that’s high), so I had enough neutrophils to share around with a few others. That provided some relief to worried family and friends. After the hospital visit, I went home to pack while Jenni collected (that’s putting it nicely) our team uniforms.
It was a phenomenal weekend, but that’s for another post.