Thursday 18th July, 2013
I received a phone call on Wednesday to inform me of my appointment time for the PET scan. It would be the next day, Thursday 18th July at 9:30 am. They asked if I was claustrophobic and I told them I wasn’t. I texted my radiologist friend to let him know and he said he would make sure I got the royal treatment. I am lucky to have these connections and every time I text or speak to a colleague to pull a favour, I think of all the people going through this in the public health system who must have agonising waits for appointments, scans and worst of all, results. People like Lisey, who had to wait two weeks for the results of her mastectomy. Those pathology results would have been available a few days after her surgery. I wish she’d told me at the time. I would have tried to pull a favour to get her those results earlier. But I didn’t know I had cancer then so we weren’t texting every day.
After seeing the haematologist on Tuesday, I really felt calm. I felt like I was exaggerating when I said I had cancer. I was comparing myself to Lisey and all that she had been through (listed in her Kylie and Delta post) and I really felt like I was insulting her with any suggestion that we were going through a similar thing. She just said “stop comparing yourself to me. It’s all shit”. Right again.
I told my sister and cousin about my haematologist’s parting words, “It could be worse”. We decided he was right. It could be worse, one of them could have cancer!
On Wednesday I visited my GP to get my now famous continuous subcuticular stitch removed from my tiny surgical wound. He commented that the wound looked beautiful and put steri-strips on it which stayed there for a few more days. I updated him on where things were at. He suggested that I probably wouldn’t be back at work for quite some time and said that from what he had heard, the treatment for Hodgkin’s lymphoma was pretty intense and a hard road. I said that from what the haematologist had told me, it sounded like it would be a walk in the park! I wasn’t sure who was right. I assumed it would be somewhere in between.
The PET scan was quite boring and uneventful. I don’t think I bothered to check the names of the reporting radiologists that day. I got changed into a gown and was escorted into a room with iron walls. There was this ancient looking, big metal machine in the corner. I wish I’d taken a photo of it now. Next time. An intravenous cannula was inserted and I was hooked up to said big metal machine. This machine contained the radioactive glucose which would be infused into me. Glucose is taken up by metabolically active cells, such as cancer cells. They suck it up as an energy source so they can continue to grow madly, which made me wonder, if I’m having such a big glucose hit, are all these cancer cells going to go on a feeding frenzy and multiply like crazy? Oh well, chemotherapy was just around the corner. I was told to lie still and I wasn’t allowed to use my phone as that would make my brain active and might affect the results. I was left in the room for 50 minutes. There was a CCTV camera in the roof so I couldn’t get up to any mischief, like sneak my phone out. There was a radio on a chair but reception was quite poor due to the iron walls. So I lay there for 50 minutes listening to fuzz.
After that I was escorted to the PET scanner. It’s similar to a CT scanner (which will probably mean nothing to anybody who has never had a CT scan), only the donut (the bit you pass through to get scanned) was a bit longer, hence the question about claustrophobia, and the table I had to lie on was very thin.
I had to lie completely still (again) on the table while I was passed twice through the donut, once quite quickly for the CT scan part and once very slowly for the PET scan part. I had to hold my arms above my head as I was scanned from head to toe. I think that took about 20 minutes.
They checked the scans and said they’d need to do another one with my arms down to get a better look at my neck. Bugger! That one was a bit quicker though. I was told they do a CT scan followed by the PET scan and superimpose the scans over each other to see what area of the body the activity in the PET scan corresponds to. The PET scan shows bright coloured areas which are referred to as areas of activity, so cancer is said to ‘light up’ on a PET scan. I am not a radiologist so my description may not be entirely accurate. If I wasn’t so far behind with this blog I would have asked my radiologist friend to write that bit so it was completely accurate. If you’re really interested which I suspect you’re not, you can google it to find out all the finer details. After that, we were done.
I got changed back into my clothes, was bulk billed for the PET scan and given a card for a free hot chocolate at the hospital cafe. Royal treatment! I enjoyed my free hot chocolate, with a muffin on the side, and then went home, still calm. Lisey and I exchanged a few texts and I commented how having cancer was like a full time job with all these scans and appointments. She asked when I would get the results of the PET scan and I said probably not until Monday week when I have chemotherapy and see the haematologist………….unless I called on my radiologist friend to get the results for me. So another text was sent and he was on the job.
Not long after that, I got a call from the radiologist who was reporting my scan (not my friend). He said he was sorry he had missed me that morning as he had been told I was coming in and he was going to say hello (royal treatment!). He then asked if I wanted to know the results. Sure, why not? He told me about the lymph nodes in my neck and chest (yep stage 2, know about them) and then said there were lymph nodes around my spleen that were involved and my spleen was marginally enlarged and showed a bit of activity so might be involved (stage 3, heart rate increasing) and there were areas in my bone marrow that also showed some activity and looked suspicious (stage 4, heart stops). He asked if I’d had a bone marrow biopsy yet and apologised about the bad news. I managed to say “that’s OK” before hanging up the phone and bursting into tears.
I remember thinking, “Stage 4. Fuck! This thing is going to get me!” If I didn’t feel like I had cancer that morning, I certainly felt like it after that news. People had been saying to me “you’ll be fine, you found it early”, and I probably had found it earlier than a lot of other people would have, but I was stage 4! Not early! How bloody long had these little bastards been quietly sneaking around my body? I’d only been itchy for two months. I texted Lisey and told her the awesome news. She went into overdrive with sympathy, empathy, researching the stats (informing me that my 5 year survival stats were still better than hers). She even offered to jump in the car and drive to my place, a mere two and half hours away.
I should not have got those results from the radiologist. I should have waited until I saw the haematologist so he could tell me exactly what they meant. I didn’t think it would change the treatment, but I knew it would change the prognosis. But how much would it change it? That’s why I should have waited and got the results from the doctor who was treating me. This is probably an example of why doctors make the worst patients! I told Lisa I didn’t really know what this all meant and that when I saw my haematologist he’d probably just make me feel like I had the flu instead of a cold. I texted my husband to let him know the results and told him not to call me as I didn’t want to talk about it. He called me. I decided straight away I was not going to tell anyone in my family as I knew they’d be beside themselves with worry and I wouldn’t be able to reassure them as I didn’t know what it meant. I considered calling my haematologist to ask him what it meant but then I decided I would be patient and wait, and perhaps punish myself for being so stupid so I would never do it again.
I calmed down after a few hours and reassured myself. If I was stage 4, I still didn’t have B symptoms, I had small volume disease and I did’t have any other adverse features so the prognosis was probably still very good. If I didn’t die, the glory would be bigger. I could say “Fuck you cancer! Stage 4 and you still didn’t get me!” Sorry, a few F bombs have found their way into this post. I just decided I wouldn’t think about it anymore. Well, I would try not to anyway.
I actually didn’t do too badly. On Friday, I went to an extended family lunch gathering with ‘the wogs’ as we affectionately call them. I don’t know if they know we call them that. Oh well, they do now! I’ve got the cancer card so I won’t get in trouble. Jenni started it anyway. Again, there were instructions; no crying and I don’t want to talk about it. They did pretty well. There weren’t too many questions and I managed to keep it together. I remember Jenni asking me on the way there when I would get the results of the PET scan. I told her I would get them when I saw the haematologist on Monday week. She asked if I was worried about it and I told her I wasn’t. I should take up poker, but then I’d actually need to know how to play it.
‘The wogs’ are all the relatives on my dad’s side of the family. There are a lot of us; apparently about 85 in total, ranging in age from several months to 93 years. Four generations. There are fairly regular Friday lunches, almost exclusively attended by the women. I’ve only been to one previously, when I was on maternity leave. Thanks to cancer, I could attend this one too. ‘The wogs’ also get together every Easter for a four day holiday at a caravan park in country Victoria (usually attended by 30 to 40) and every Boxing Day at the home of whoever volunteers to host it. Everyone, Jenni has volunteered again this year and she said you can all wear your shoes on her cream carpet, even if it’s raining. Credit must go to Lesley, who we affectionately call ‘The President’. Might as well get it all out there! She didn’t know about that nick name either. She’s even saved as ‘Lesley President’ in my phone. Lesley has a steely and unwavering, even unforgiving determination to make sure this family sticks together, and for that we thank her. There are not many families out there who get together as much as this one does. Most just talk about it, like my mum’s side of the family. Us cousins are always saying we need to get the whole family together but it never happens. Every family needs a President! So Tomo’s, nominations are open! If you don’t realise the importance of family before you have cancer, you certainly realise it and appreciate them when you get cancer. I already appreciated them but now I love them even more!
My daughter was given T.E.D. to bring home from school for the weekend. T.E.D. stands for Treat Everyone Decently. He is a teddy bear and each weekend one student, who has treated everyone decently that week, gets to take him home to spend the weekend with their family. He also comes with a journal that you have to put photos in and write about what you did with T.E.D. for the weekend. That was probably very good timing as we were quite busy with T.E.D, so there wasn’t much time to think about anything else.