35. Results are in

Thursday 19th September, 2013

Sorry Helen and Lesley. I’ve already made you wait a lot longer for the results than I had to wait, so that’s probably a bit unfair.

After the PET scan, I went to the local shopping centre as I needed to get a few things. One of those things was a mermaid nightie for my daughter. I had seen it in a catalogue and knew she would love it. The store only had it in a size 5 and I needed a 7. I then went to the supermarket to get a couple of groceries. I lined up at the check out and the lady in front of me, who had a lot more than me, let me go in front of her. That NEVER happens to me. Must have been the scarf. Now I just ask people if I can go in front of them if I’ve only got one or two things. I’m making use of the cancer card while I can!

After shopping, I went home with about half an hour to spare before I had to head off to the appointment to get my results. While I was at home, it occurred to me that what I had seen on the CT scan of my neck and interpreted as big lymph nodes which had taken up the contrast, were actually blood vessels with intravenous contrast in them, which is a completely normal finding on a CT scan when you’re given intravenous contrast! Lymph nodes wouldn’t even take up the intravenous contrast.  They take up the radioactive glucose for a PET scan, but intravenous contrast is not given to highlight lymph nodes (I’ll have to confirm that with a radiologist). I had just had a quick look at the CT scan and jumped to the worst conclusion.

I headed off to the appointment and parked my car in the hospital car park. When I got out of the car, a lady who was leaving gave me her parking ticket as she still had more than an hour left on it. It only saved me $1 but it was a very nice gesture and it was the second good thing that had happened that day. Must have been the scarf again. The thought crossed my mind that perhaps this meant the results of the PET scan would be good, since as the saying goes, ‘good things happen in threes’, or is that bad things?

I went into the hospital and upstairs to the haematologists’ rooms. I didn’t have to wait very long. She called me in and she was smiling. ‘Have you seen your results?’ she asked. I told her I hadn’t. I can’t remember her exact words but she said the results were great. She printed out a copy and gave it to me and carefully compared it with the results of the first PET scan, and told me that this second re-staging scan showed only one or two lymph nodes in my chest that were still showing activity (indicating that there was still cancer there). There had been a dramatic improvement in my chest and there was no evidence of cancer in my neck, in the lymph nodes around my spleen or in my spleen. The first PET scan had been suggestive of lymphoma in my spleen although my haematologist wasn’t certain if it was there or not, but this one showed no evidence of it. The radiologist who reported the first scan also raised the possibility of bone marrow involvement although my haematologist was quite firm in his opinion that there was no lymphoma in my bone marrow. This scan indicated that my bone marrow looked normal.

I mustn’t have reacted much to the news that the scan showed a dramatic improvement, as the haematologist kept telling me it was great news. It was fantastic. She said if the scan had been done after three cycles (6 treatments) of chemotherapy instead of two cycles (4 treatments), it probably would have been completely negative. She said my cancer is responding to the chemo and it is excellent news. She then went on to say after two more sessions of chemo I’ll be half way and then I can start counting them down. She was very, very positive and was also trying to give me a strategy to get through the 8 further sessions of chemo I had in front of me.

I asked her if people ever respond like I have but then the cancer has progressed when the PET scan at the end of treatment is done. She said “well yes, but that is very, very rare” and again reassured me that things were great.

I left the appointment and before I exited the hospital I sent the following text to a few people who were desperate to know the results of the scan:

Good things happen in threes. Today a lady let me go in front of her at the supermarket, then when I parked my car at the hospital a lady gave me her parking ticket because there was more than an hour left on it. And my PET scan is almost negative. Doctor very happy. She said if they’d done it after 3 cycles instead of 2 it would have been completely negative.

My phone was then running hot. Text messages, phone calls. I couldn’t keep up. Everyone was VERY excited and relieved. Jenni texted me and said she was almost crying. Almost? I would have thought that result should bring on some tears!

As I drove away from the hospital, I was feeling quite good about the results but I wasn’t excited. It was definitely a huge relief to know that all the side effects I had experienced were not just horrible effects of a treatment that was doing nothing for the cancer. It would make the side effects that little bit easier to tolerate in the future. I didn’t want to be negative Nelly but it was impossible to feel excited when I was only one third of the way through treatment and I still had more than three months of chemotherapy and the associated side effects to endure. Eight mores sessions, which was twice as many as I had behind me. I did spread the word however (although not too widely), that it was good to know that the good chemo was kicking the good cancer’s arse!

I also thought about other people with other types of cancer who go through chemotherapy and experience all the horrid side effects but have no idea whether it is actually working or not, as they don’t have a PET scan after a few cycles to assess how the cancer is responding. People like Lisey with breast cancer. These people usually have surgery, the aim of which is to remove all the cancer, before they commence chemotherapy (but sometimes things are done in a different order) so there is essentially no cancer left to assess with a scan. The chemotherapy is given to take care of any stray cancer cells which might be floating around. There is just no real way of knowing if the cancer responds to that particular chemotherapy. You just can’t compare different types of cancers and their treatments. It’s like comparing apples with oranges. Lisey later texted me with these very thoughts, that she would never really know if the chemotherapy she was given had any effect on her cancer cells. I did feel I was in a fortunate position knowing that my chemotherapy was working.

I drove to the nearest shopping centre to try to find that mermaid nightie for my daughter. Before I went in, I had a feeling they wouldn’t have it because I’d already had my three good things for the day. They didn’t have the nightie but I did find some lovely mermaid bathers. I gave them to her that night and told her I’d had a test which showed my cancer was nearly gone so I bought her a present to celebrate. She was pretty happy with that – both the test results and (probably more so) the bathers.

That evening I texted my radiologist colleague and thanked him for the good PET scan result as I had asked him to make sure it was negative. I also asked him whether he thought my bone marrow did actually have lymphoma in it on the first PET scan or whether the radiologist had overcalled it, which my haematologist had thought was the case. The appearance of my bone marrow was different on the re-staging PET scan so I was wondering whether that actually meant there probably was lymphoma there initially and there now wasn’t. My radiologist colleague agreed that  radiologists often overcall the bone marrow (that is, say it looks like it has lymphoma in it when in fact it doesn’t) and that the appearance on the initial PET scan probably represented reactive change rather than infiltration by lymphoma. Thinking about it later, I decided that my bone marrow probably looked different on the re-staging PET scan because the chemotherapy was wiping it out! I have no idea if that is correct or not and apologies if this paragraph has completely confused the non-medical readers.

So, how did I feel about the results once I had really had time to think about things? I knew they were good results but I also knew they could have been better. And of course, a lot, lot worse. My haematologist (not the one I saw to get the results, the male one who I had seen from the start and would continue to see when he got back from holidays) had told me that he expected this PET scan to be negative. It was nearly negative, but it wasn’t completely negative, so what did that mean? I didn’t have bulky disease (that is, my lymph nodes weren’t greatly enlarged) but I had read about people with bulky disease who had a negative PET scan after 2 cycles of chemotherapy. So given that I didn’t have bulky disease and the PET scan wasn’t negative, did that mean the response wasn’t really that great after all? It probably didn’t because some people have no response at all to the type of chemotherapy I am having (ABVD) and at least I was responding. I just didn’t know what it all really meant.

And I don’t really believe that good things happen in threes. If the lady in the supermarket didn’t let me in front of her and the lady in the car park didn’t give me her parking ticket, my PET scan still would have been almost negative.

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The lucky ticket. It’s a shame it wasn’t a tattslotto ticket!

1. Welcome to my adventure

I’m not quite sure why I’m writing this blog.  I’m not into social media at all.  I’m not even on FaceBook! I’ll start by telling you a little bit about myself, for those who don’t know me.  I’m 38 years old and married with two beautiful children; a six year old daughter who started prep this year and a one year old son who is, like most one year old boys, busy!.  I’m a forensic pathologist and up until recently was working full time in the city I live about an hour away from.  Life was pretty hectic.  I was juggling the demands of a young family and a full time job (with a husband who also worked full time in the city), and was probably not doing a particularly good job of either.  Something had to give.

Life was seemingly normal, but I probably had cancer.

First day of school. Life was seemingly normal.

My one year old dude.

My one year old dude.

In July this year, I was diagnosed with Hodgkin’s lymphoma.  Obviously that is the main reason for this blog; to document my adventure (I don’t like the word journey, it’s used too much on all those reality shows, so I’m calling this an adventure).   So why is a person who is not even on FaceBook doing a blog?  If I think about it there are several reasons.

  • I get a lot of texts and emails which I hope I always respond to, although sometimes it might take a while.  There are probably people who don’t text or email because they don’t want to annoy me (or perhaps they don’t really care).  This is probably the easiest way of keeping everyone up to date.
  • It will be something for me and my family to look back on to see what I was thinking or how I was feeling as I faced the biggest challenge of my life.
  • It might connect me with other people who are going through the same thing.  So far, I haven’t been able to find any blogs by people going through the treatment of Hodgkin’s lymphoma right now.  They are probably out there, I just haven’t found them.  Probably because I’m not on FaceBook.
  • It might help other people who will go through this in the future.  Unfortunately they don’t know who they are yet.

I was probably inspired to write this blog by my beautiful, courageous friend, Lisey.  We went to primary school and high school together, lost touch after high school and reconnected last year at our 20 year reunion.  She was diagnosed with breast cancer in January this year.  I made a few trips to her home town earlier this year.  She lives quite a distance from me, but as luck would have it we do a bit of work at her local hospital.  After initially refusing to participate in the ‘country roster’ because it was too far away (and I was expressing for my son at the time), I put my hand up to go.   Lisa and I managed to catch up for lunch and it was great…..although she paid and I am still very embarrassed about that!  She had only recently been diagnosed with cancer and her attitude was amazing.   We laughed like school girls and I remember commenting to a mutual friend (that’s you Ev, you’ve scored a mention in my first post) that it was like we’d never lost touch for those twenty years.   Lisa told me what was in store for her and we joked that she’d probably get through the months of treatment ahead, be given the all clear and then walk out of the doctors office and get hit by a truck.  We have a similar sense of humour.

Two girls with cancer in their thirties. One knew, one didn’t. Taken by the Queen of selfies! Lisa wonders if it was our long hair that gave us cancer.

Lisa has documented her journey (yes, she called it a journey) in a truly inspirational blog which you can find at http://www.shittytittiebangbang.com (awesome name for a blog!).  I signed up to Lisa’s blog from the start and have loved reading her posts so hopefully someone out there will love reading mine.  I must make one thing clear though.  I am not doing this blog to compete with Lisa.  She wins hands down!  We were very competitive in primary school, both pretty fast runners and we took it in turns beating each other (although she probably won more times).  The competitiveness waned a bit in high school but it seems it started up again in adulthood when we got cancer in the same year, but she got it first (or found it first) so she wins again!  It’s been a bit of a running joke between us about who is the winner on this cancer journey/adventure.  Unlike primary school where each of us wanted to be the winner, it seems we have now matured and are adamant the other one is the winner.

Lisa was one of the first people I told that I had cancer, via email as I didn’t want to talk to anyone, and she has been a bigger support to me than I’m sure she knows.  She has encouraged me, empathised with me and supported me, but most importantly she has made me laugh.  I think that started the day I told her I had cancer when she decided we should call ourselves Kylie and Delta.  We joked about the reason both of us got cancer in the same year, in our thirties.  Was there something in the water at that primary school?  Was it that ridiculous red rooster slide (a piece of play equipment in the play ground)?  It’s gone now so the children are safe.  The conversations we have now are priceless.  Just today, we were texting about pubic hair.  I wish I had been the one to get cancer first, so I could be there for Lisa like she has been there for me.  And so I could win!

In her post entitled ‘Just call us Kylie and Delta’, which you can read about here (I will be so impressed if that link works!), she is right on the money with everything she says, of course, because she has been where I am about to go.  She says “you will be surprised at the people that will be there for you and the ones that aren’t”.  So very, very true.  I am actually gobsmacked rather than surprised; almost moved to tears by the generosity of some people, like the school mum who dropped a voucher for a massage in my letterbox, the non-stop offers of play dates so my daughter doesn’t have to see me sick, the meals that have been cooked for my family, the ‘cancer show bags’ friends have thoughtfully put together for me, cards from people I haven’t seen in years, my mum virtually moving in when I am incapable of looking after my children for a few days after chemotherapy, my sister dropping everything when I’m having a bad day (there’s only been one really bad day) and offering to dry and straighten my hair (when I had it) because I just couldn’t be bothered.  I have also been really hurt and confused by the people I thought I was close to who haven’t bothered to contact me for over a month.

Lisa also says “you will learn to laugh at the stupid things people say or believe about why you got cancer, or how you got the “good cancer”.  Also very, very true and another reason for doing this blog and in fact, the inspiration for the name of this blog.  People who know me will know that the title “I Got The Good Cancer”, is me being sarcastic.  I did not get a good cancer.  There is no such thing as a good cancer.  Well OK, a little basal cell carcinoma of the skin could be good.  If I had $1 for every person who told me I got a good cancer, or even THE BEST cancer, I’d be quite well off.  Saying that to someone with cancer is not helpful, so another reason for doing this blog is a bit of education.  I think people feel the need to say something positive to people with cancer, and I understand that.  I’m guilty of it myself.  I’m pretty sure I told Lisa it was good that her cancer was only in one lymph node.  That’s not good.  It’s shit!  Good would have been cancer in no lymph nodes, or no cancer at all.  What I meant was that cancer in one lymph node is better than having it in twenty, but that doesn’t make it good.  I now know that is not a helpful thing to say.  So I am not trying to insult or degrade you if you have made these comments, although I probably already have, but I just want you to know it is not helpful.  I know that you are trying to say there are worse cancers, and it is true there are worse cancers.  But that doesn’t make any cancer a good cancer.  Since being diagnosed with cancer I have met many other people with cancer and we have all been told we have a good cancer and we all find it annoying!  Yes, Hodgkin’s lymphoma has a good prognosis but that does not make it a good cancer.  It is certainly not the cancer I would choose if I had to have cancer and got to choose which one I could have.  Hopefully by the end of this blog, or even before then, you will agree with me.   I haven’t heard any theories about why I got cancer.  I’m sure people have them but I am blissfully unaware of what they think.  I have never questioned why I got cancer.  My theory is that shit happens.  In my line of work, I see that a lot.

Oh, one other thing.  Please don’t tell someone with cancer you will do anything to help when really you can’t or you have no intention of doing anything.  I do not expect or even need help from every person I know.  I understand people are busy with their own lives and worries and the world doesn’t revolve around me and my cancer diagnosis.  Sometimes I think people say that just to make themselves feel better; they’ve offered to help the chick with cancer.  Job done.   It’s funny…..it’s mostly the people who have gone over the top and told me they’ll be with me every step of the way that have actually done nothing and I haven’t heard from them again.  So if you want to piss me off, tell me I’ve got a good cancer and you’ll do absolutely anything for me.  If you want my respect, tell me it’s shit I’ve got cancer and you’d love to help but you’ve got a bit going on right now and you just don’t have the time.

What will follow is a multitude of posts documenting my adventure through Hodgkin’s lymphoma.  For those who don’t know me, I hope you enjoy getting to know me.  For those who do know me, or think they do, I hope you enjoy getting to know me even better.  To Lisa, I say a huge, heartfelt thank you.  Thank you for getting cancer before me, but seriously, you shouldn’t have!  Bring on that joint pity party I say.  If we wait long enough, it could even be a joint remission party!  Lisa has been on my back for ages to get on FaceBook so I might just have to do that for her.

I apologise in advance as I will probably write too much so I hope it doesn’t bore you.  I always had trouble sticking to word limits at school.  As I write this post, I am (based on the current plan) one third of the way through treatment and just over two months since I was diagnosed, so there is a lot of catching up to do.  So far, I can say it is shit, it is not fun and it is certainly not good.  But I will get through the treatment, as many people have before me, and there will be some positives.  I still laugh, I still have a sense of humour and I still have good times, in fact, many more good times than bad.  It’s life changing, not just for me, but for everyone around me.  Despite the many downsides, I really do believe that at the end of this, I will say “I’m glad I got cancer”…………”but it wasn’t a good one”.