Monday 10th to Monday 17th February, 2014
Just in case you’ve forgotten, IVAC is the ‘salvage chemotherapy’ I would be receiving. I’ve called this slam 1, as opposed to round 1, the term I used for the rounds of ABVD, for very good reason.
In the lead up to my admission to hospital I received a phone call from a haematology registrar on the Friday prior, to inform me that a bed had been booked for me to be admitted on Monday 10th February. At that point I had no idea how long I’d be in hospital for so I thought I’d take the opportunity to try to get some information from her. It quickly became apparent that she really did not have much of an idea of what was going on and I was not impressed. She used terms like induction chemotherapy and told me I’d need a bone marrow biopsy to assess my response to the chemo. A bone marrow biopsy? WTF? I asked her why I would be having a bone marrow biopsy when I didn’t have cancer in my bone marrow. How can you assess how cancer is responding to treatment by doing a biopsy in a place where there is no cancer? She explained that she was new to this hospital and different hospitals have different protocols. I also asked about the Hickman line being put in and it seemed that hadn’t been booked.
I got off the phone and left a message for my haematologist to call me back. She called me soon after and I asked her about the bone marrow biopsy – no, I wouldn’t be having one. I also asked her about the Hickman line as that was the first thing that needed to happen when I got to hospital. She said the registrar must have misunderstood the instructions and that she would call me back. The registrar called me again and told me I was on the list for insertion of a Hickman line on Monday morning and I would need to be admitted at 7 am. I asked what time the procedure would be and explained that I lived about an hour away so I didn’t want to come that early if I didn’t need to. She said the procedure would take place before lunch but I needed to be there at 7 am. Why? To get the ball rolling.
I wasn’t intentionally being difficult but I know how public hospitals work. I knew if I got there at 7 am there would be a very good chance I would sit around for a few hours before I had the Hickman line inserted. To get in at 7 am would involve getting someone to look after my kids and take them to school and childcare, and also getting someone to look after Jenni’s kids and taking them to school, as she was going to drive me into hospital. If I had to be there at 7 am, so be it, but I didn’t want to get in there that early for no good reason.
Another phone call to my consultant followed by another phone call from the registrar and I was told the Hickman line would be put in at about 11 am so I needed to be there by 10 am. That was much better as it meant Jenni and I could drop our kids at school in the morning and then go straight into the hospital. I think I had already become a typical doctor making a bad patient and I hadn’t even been admitted to hospital. I also sensed that the registrar and I were not going to get along. I had ascertained that I would be given chemotherapy over 5 days so if I was admitted on Monday, I expected to be in hospital until Friday.
I went to a trivia night organised by members of ‘The Good Tittie Team’ that night. It was a great night and from memory around $4000 was raised for our team. On Sunday, I had morning tea with friends at my house and I got to eat some red velvet star cheesecake, the dessert I had missed out on at a Christmas get together last year, after throwing up in my friends back yard and going home early. Thanks Lisa.
Soon enough it was Monday morning. Jenni and I dropped our kids at school and headed into hospital. The admission process took a while. I was admitted as a private patient and was told that I would not be guaranteed a single room (as would be the case if I was admitted to a private hospital) but that if a single room was available I would be given it upon request. I eventually got to the ward and very quickly realised that I was a stuck up private patient. I went to a public high school and when I started my medical degree, I was in the minority, as most people came from private schools. I thought they were all a bit stuck up. Now I was one of them.
The room was a double room and it was not nice at all. It was tiny, dated and just did not seem like a nice place to endure five days of chemotherapy. I immediately wanted to go back to my local private hospital. Jenni said she would fix it for me by telling the nurses I was a private patient and asking if I could be transferred to a private room. She was told I had no chance. There weren’t many private rooms on the ward and they were used for patients who needed to be isolated. It was going to be a long week.
Not at all surprisingly, my Hickman line that was supposed to go in at 11 am went in at about 2 pm, by which time I was starving as I had been told to fast. The procedure took place in the radiology department and I was apparently sedated with fentanyl. I called it a public hospital dose of fantanyl as I didn’t feel at all sedated and didn’t find the experience particularly pleasant. The line was inserted in my right upper chest and then tunnelled under my skin to my neck, right under by perfect scar from the lymph node biopsy last year. That bit was particularly painful as the radiologist had to get it through the underlying scar tissue. In approximately that area, a small incision was made and the line was inserted into a vein in my neck and fed down towards my heart.
By the time I got back to the ward, the nurses had decided it was too late to start chemo that day so I would be starting tomorrow, so my Friday discharge was now pushed out to Saturday. I decided to escape from hospital that night and go out for dinner with friends. I didn’t technically escape, I just liked to use that term as I felt like I was going to be ‘locked up’ for the next week. I got permission to leave and I returned at the requested time so I could start pre hydration for the chemotherapy – that basically refers to giving me a lot of intravenous fluid to protect my kidneys from the chemotherapy drugs. I also met the registrar that day and she was actually lovely. We were going to get along OK after all, I just wasn’t going to ask her or the resident any questions about my treatment. I would direct all my questions to the consultant.
I had very little sleep that first night due to my room being close to automatic doors that constantly opened and closed, rather loud nurses (just doing their job), overnight observations, constant announcements over the hospital loud speaker system, constant beeping of intravenous infusion pumps and a room mate who snored, talked in her sleep and grabbed hold of my bed and gave it a good shake every time she got up to go the toilet. Have I said it was going to be a long week?
On Tuesday morning the chemotherapy started. I kept asking the nurses what side effects I should expect as I was expecting it to be pretty horrendous spending much of the time throwing up. They told me I shouldn’t really experience any major side effects while I was in hospital and that any nausea or vomiting could be controlled with a cocktail of drugs.
I was given some education about the drugs I would be receiving and the side effects each one would cause. As I’ve said the regimen I was being given was called IVAC and consisted of 3 chemotherapy drugs:
- I for Ifosfamide
- V for Etopside. Hang on, Etoposide doesn’t start with V but it’s also called VP-16
- AC for Ara-C or Cytarabine
The side effects are pretty similar for all of the drugs and include hair loss, nausea and vomiting, diarrhoea, loss of appetite, drop in blood counts and more! The loss of appetite was pretty quick to hit, partly due to the chemotherapy and partly due to the disgraceful stuff served up that was supposed to be food. It all smelt the same and was truly horrendous. I promise I am not exaggerating. For the first few days I was offered tea and coffee for morning and afternoon tea. I don’t drink coffee and I was told to avoid hot drinks to reduce the risk of developing mouth ulcers. My room mate however, was being delivered Big M’s, muesli bars, cheese and biscuits etc. I asked one day if I could have something other than tea or coffee. Apparently I had to see a dietician first. So after several days of basically not eating, I was finally referred to a dietician. My diet was changed to ‘high energy, high protein’ and I too could order Big M’s and all sorts of other things for morning and afternoon tea. I was also provided with a supplemental menu items list so I could order things that weren’t on the standard menu; different meals, soft drink, hot food for breakfast for example. It would have been nice to know about that a bit earlier!
I would also be given a continuous infusion of a drug called Mesna to protect my bladder from haemorrhagic cystitis (bleeding into the bladder) which is caused by the Ifosfamide. Oh, and then there was the steroid eyedrops that I had to put in my eyes EVERY two hours to prevent eye problems caused by cytarabine. I was lucky enough to have that frequency reduced to every four hours overnight.
I didn’t have every drug, every day but to be honest, I can’t remember what I had. I think the Etoposide and Ifosfamide might have been every day but the cytarabine was only given on 2 days so I could stop the lovely eyedrops 48 hours after that finished. Once the chemotherapy started, extra infusion pumps and bags of fluid kept getting added to my IV pole, the IV pole that I was permanently attached to for the next few days, until it looked like this:
I was weighed every day and if my weight went up by more than 1 kg I had to have frusemide, which is a diuretic to make me pee. As if I wasn’t peeing enough with all the fluid they were pumping into me! After a dose of frusemide I would seriously go to the toilet and pass very large volumes of urine every 10-15 minutes. Quite inconvenient when you’re feeling like crap and just want to stay in bed. At some point I was informed that the Mesna would need to run for 24 hours after the chemotherapy finished so my Friday discharge that became Saturday was now Sunday! I hoped it didn’t get extended again.
I met my room mate but we didn’t talk too much as she was going through a very difficult time. I think she was in her 50’s and she had leukaemia. She had a stem cell transplant last year (from a donor) and had just found out that her leukaemia was back and she was out of options. She was going to die in a few months. There were apparently a couple of clinical trials she could take part in but she was told they would probably do more harm than good and she needed to think about the quality of her life. She chose to not try any further treatment. Because the rooms are so small, I overheard every conversation she had telling people she was dying. That was obviously nowhere near as hard for me as it was for her, but it was not nice to listen to. At one point, when I was in the midst of chemo, in bed and feeling particularly crappy, a social worker asked me to leave the room so they could have a private family meeting. I thought that was rather inappropriate.
Her sister came in to visit her one day and told her she had to “keep fighting” and she couldn’t “give up”. I felt like slapping her. My room mate had accepted she had done all she could to try to overcome the cancer. I’m sure she’d been to hell and back with the treatment she had endured and she didn’t want to endure anymore if the chances of success were minimal. Understandable. So did she “give up”? I don’t think so. I think she accepted her situation.
I’ve always hated the language used around cancer, even before I was diagnosed. If someone dies, they “lost their battle”. Did they not fight hard enough? No, they just didn’t stand a chance against this bastard of a disease. I’ve just never liked the connotation of ‘losing’, but maybe that’s my competitive streak. Whilst a positive attitude and determination are probably good qualities to have, clearly they are not enough or death rates from cancer would be pretty low. Take Jim Stynes for example. He had a huge number of operations and I think he tried every type of treatment known to man kind, including some very alternative ones. He died. Why? Not because he didn’t fight hard enough, because he had metastatic melanoma and he didn’t stand a chance from the moment he was diagnosed.
If I die, it won’t be because I didn’t “fight” hard enough, it will because the treatment I endured didn’t work like we were hoping. If I go into remission or I’m cured, everyone will tell me how I kicked cancer’s butt, and how strong and determined I was. I will accept those comments and I’ll probably like hearing them but they won’t really be true. It will be the chemotherapy that whipped the cancer’s arse, along with mine along the way. I suppose you have to be pretty strong to endure chemotherapy but strength alone will not cure cancer.
I could go on but I won’t. Instead I will refer you to a very eloquently written post in my friend Lisey’s blog, about the language used around cancer. I loved it when she wrote it, before I knew I had cancer, and I still love it now. You can read it here.
Well, I’ve digressed again. How did the chemo affect me? I have to say that overall, it was not as bad as I thought it would be. I think the unknown is always worse than reality. I had some nausea but got straight onto that with drugs the moment it appeared. I think I only threw up once or twice. After having no sleep the first night in hospital due to noise, I sourced some ear plugs but then the next night, or maybe it was the one after, I was awake most of the night with cramps in my thighs. My magnesium had been low and that was replaced during the day. Low magnesium can cause cramps so they decided to give me a bit more overnight. When that hadn’t caused any relief after two hours, I looked at the pump and realised it wasn’t even running. I then resorted to endone which did the trick and I got some sleep. At one point during the night I was standing up beside my bed as that was the most comfortable position to be in. A nurse came in asked why I was standing up and when I told him, his response was “whatever works”. Overwhelmed by the sympathy!
In general, I found the nurses to be friendly, efficient, caring and very knowledgable. I also noticed there were a lot of accents amongst them; American, English, Scottish, Irish. I mentioned this observation to a male nurse with an English accent and asked him if they all lived here or they were on working holidays. His response, “I’m from Brisbane”. OK, picked a good nurse to ask that question. One of my visitors did agree with me though; he definitely sounded like he had an English accent.
I started spiking fevers on about day 3 of chemo, which could have been due to the cytarabine (a known side effect) or an infection. Since an infection was the most concerning possibility, I had to have a number of tests to exclude that and I was started on broad spectrum antibiotics which in turn caused diarrhoea and a generalised rash. Oh the joys.
I had quite a few visitors, which was nice, including some work colleagues, one of whom walked in and exclaimed, “You look like shit!” I was actually quite happy with that observation as I’d been telling people for months that I do look like shit sometimes. Most people only ever saw me when I was out and about after recovering from chemo and were always surprised at how well I looked. Another work colleague, Natalie, made a number of visits, bringing me in lollies and lemonade (before I got changed to the special diet) as that was about all I could manage to eat and drink. She also bought in a box full of cards, notes, gifts, DVD’s and more lollies which she had collected from the generous souls at my workplace. I also had a visit from cousin Sonya who brought my daughter in to see me. She gave me a flower for Valentine’s Day and had drawn me a picture (my daughter, not Sonya, that would be weird if Sonya drew a picture for me), with a gorgeous note on the back, to brighten up my room. We decided it probably wasn’t wise to bring the nearly two year old son in given the size of the rooms and the lines going in to me that I’m sure he would have loved to have pulled out, or tripped over.
I think the most unusual visit I had was from Jenni and her husband, Brendan, after they’d been out for dinner in the city. It was 1 am! I was awake so they didn’t wake me but I did it suggest it probably wasn’t an entirely appropriate time to visit. “It’s OK”, said Jenni, “I already checked with nurses and there are no set visiting hours on this ward”. Never mind my room mate in our very intimate room. I think she was a heavy sleeper so I don’t think they woke her and it was a nice surprise visit.
The next morning, Sunday 16th February, I remember all too well, unfortunately. I had a shower and in the process of doing so, managed to make a mess of the dressing on my Hickman line such that it would need to be replaced. I got back into bed and there was a text message on my phone. It was from Jenni, telling me her mother-in-law, Barb, had died. My male nurse walked into the room soon after and I was crying. I told him why I was crying and also showed him the dressing over my Hickman line to let him know he’d need to redress it. Because I was quite shaken, I’m pretty sure I exposed my entire right breast to him when I was showing him the dressing.
I’ve talked about Barb before in this blog. She was diagnosed with advanced ovarian cancer a couple of months after I was diagnosed with cancer and she was one of the people we were doing the walk for. After initially responding well to treatment, her cancer recurred early this year and she and her family were told there was nothing more that could be done. She accepted the news with dignity. She constantly told me that I deserved to get better more than she did, but I did not agree with her.
Barb is one of the most beautiful people I have ever met, probably the most beautiful. She never had a bad word to say about anybody and she never swore. Even when she knew she was dying of cancer, Brendan and Jenni tried to make her say “Fuck you cancer”. It had always been a challenge to make her swear and nobody ever succeeded. She still wouldn’t say it and the best they got was “Damn you, cancer”. When Barb had initially been admitted to hospital, her beloved and devoted husband, Len, who is just as beautiful as her, was also in hospital undergoing major heart surgery. Not only was it an extremely traumatic time for her children, having both of their parents very unwell in two different hospitals, there was a real concern that Len and Barb may never see each other again. Fortunately Len bounced back from surgery extremely well and Barb’s condition improved so they were able to spend some time together before she died.
When Jenni and Brendan came to visit me at 1 am the night before, which was actually only a few hours earlier, they told me they had been to see Barb that evening before they went out for tea, and she was doing well. Although her death was supposedly expected, in the end it was very quick and completely unexpected. Fortunately, Len was by her side.
During my admission, I had several visits from the consultant on ward service. I was very pleased he was a Professor. I like Professors. In general, they’ve been around for a while and they know their stuff. I had saved all my questions for him. Obviously now I can’t remember all the questions I asked him but I know he ran through what my planned treatment would involve. He talked about the fact I’d be having an autologous stem cell transplant (if the lymphoma responded to the ‘salvage chemotherapy’ of course) and also asked if I had any siblings so they could be tested to see if they were a match for me and could donate their stem cells to me. I asked why he was doing that if I was having a transplant with my own stem cells. He said he wanted all available information and made it clear that whilst there was a plan at the moment, that plan could change along the way. Never a truer word spoken.
During the first visit, he told me that it is very uncommon to die from Hodgkin’s lymphoma and he told me I had more than a 50% chance of being cured by the treatment I was about to receive. I liked hearing that word cure as the haematologist I’d seen the week before seemed very determined not to use it; she would only talk about a durable remission. During the next visit, I pointed that out to him and said I was a bit confused by the terminology. Was the goal really to cure me? He was adamant he was aiming for cure and I was happy to hear that, of course. He even said the other haematologist was a wuss.
I remember asking why IVAC had been chosen as the ‘salvage chemotherapy’ regime as I was aware, (although certainly didn’t know the details of), that were a large number of regimens available. He reeled of the names of a number of other regimens and said he had used them but he always tended to end up with IVAC, so he was just cutting to the chase. I liked that answer. When I saw him on Friday, I asked if I would be able to go home on Sunday as that is when the Mesna would be finished. He said it would depend how I was but that he’d prefer I went home on Monday as he would like to see me before I went. Another night in hospital.
I had a visit from the transplant nurse to get the details of my siblings so they could be sent information about being tested to see if they matched me. She asked if I thought they’d be willing to do it. Of course they would! It would be a competition and if anybody matched they would claim that as a victory for sure. I asked her how the stem cells would be collected as I had assumed it would be from a bloody big needle in the hip, like a bone marrow biopsy, and therefore rather painful. This was not the case however. Injections would be given to mobilise bone marrow stem cells and send them out into the peripheral blood. They would then be collected in a manner similar to donating blood, so it would be relatively painless. I did tell Jenni that I was a little disappointed that if she did ever have to donate her stem cells to me, she wouldn’t have to experience much pain in doing so.
I think the Mesna finished pretty late on Sunday so I probably needed to stay until Monday anyway. The registrar and resident came around early in the morning and then I had to wait for them to come back with the consultant. I was dressed, packed and ready to go. When he came around he made sure all my follow up appointments had been organised. I would go to my local private hospital for a blood test and transfusion if I needed it on Wednesday and then on Friday I would come back to this hospital, as I was planning to be in the city for a conference. I asked him how I should expect to feel in the next few days and he said I’d probably feel a bit washed out but that’s about it. That didn’t sound too bad to me. I had registered to go to a pathology conference that coming weekend so I asked him if it would be OK to go to that given that my immune system would probably be non-existent by then. He said if I felt OK, I could go and also told me that I was more likely to develop an infection from the bugs that lived on and in me, than I was to get sick from a bunch of pathologists coughing over me.
I was given the OK to go home and soon after got kicked out of my bed as it was needed for another patient. Joanne (the other favourite sister) came to pick me up. We had to wait a while for my drug supply from pharmacy but eventually we were on our way. So, whilst that 8 days in hospital wasn’t the most fun I have ever had, and it was a long time to be away from my kids, it wasn’t as bad as I had thought it would be. So, why did I call it slam 1? Well, things got a bit worse after I got home.
I did have a nice welcome home however, finding this message pinned to the door.
Well there’s a lazy 4700 words; now three and half months behind.