46. The adventure continues……

Yep, that’s right, it is not the end of my adventure with “the good cancer”. I had the PET scan this morning and my radiologist friend had the pleasure of delivering the results to me. I had warned him that I expected the scan to be positive (more about that later) and it was. I didn’t go into great detail with him but there is apparently quite a bit of activity in my chest and low down on the right side of my neck. It’s not a shock to me but it is very, very annoying, to put it lightly.  I wish I could be wrong with this self-diagnosing caper!

So, it looks like 2014 will not be the ‘annus mirabilis’ I was hoping for. I will now look forward to 2015.

I will know more when I see my haematologist so I will do one of my usual very lengthy posts then.

As my sister just posted on Facebook, FUCK YOU CANCER!!!  And as my cancer sister Lisey commented “Cancer can go and fuck off and when it gets to there it can fuck off some more!”

I’ll get you this time you bastard!

Thank you every one for your thoughts and messages. Excuse me if I ignore phone calls today. I will talk when I know what the plan is.

 

45. Chemotherapy – round 12…….THE. LAST. ONE. (I hope)

Monday 30th December, 2013 to Saturday 25th January, 2014

There are not many words required for this post, the photos say it all. But you know me, I’m sure I’ll find a lot of words. In the days leading up the my last hit of chemo, I had a lot of people asking me if I was excited. Excited probably wasn’t the right word. I was happy, relieved, even thankful, but I wasn’t excited. If I knew I could walk out feeling on top of the world and I absolutely knew it was the end, then I’m sure I would have been excited. But knowing that I would still be bed bound and feeling like crap for a few days and not knowing if it really was my last treatment for Hodgkin’s lymphoma EVER, meant that I couldn’t really be excited. I was however, a little bit excited about getting my PICC line removed and a little bit excited about the fact that I definitely would not have any chemo or any other form of cancer treatment in January. There I go, first paragraph and already so many words.

Since it was school holidays and my haematologist was also on holidays (and it was my LAST chemo), I requested an early appointment which would also mean an early finish. My appointment was for 8:30 am so Jenni picked me up at about 8:15 am. I walked down the corridor to the day infusion ward for what I hoped was the very last time as a cancer patient. The wall at the end was painted blue. It had been green every other time.

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I’ve lost count of how many times I’ve walked down this corridor.

I arrived at the newly refurbished day infusion ward and was once again escorted to the naughty corner for my very last (hopefully) treatment. The renovations were good. There was more room and the colour scheme (blue instead of green) was a definite improvement. I was feeling OK that morning. I wasn’t nauseated and my appetite was OK (so definitely not anticipatory nausea for round 10). Blood was taken for a blood test and chemo was underway very quickly. My nurse asked me if we were changing my PICC line dressing that day and I promptly informed her that we weren’t as the PICC line was coming out as soon as that last drop of chemo had gone in!

I didn’t notice it at the time, but Jenni was acting a bit odd that morning. She told me she had to go to the shops to get some birthday cards. I didn’t think anything of it. When she returned, she sat down on her visitors chair and then she suddenly moved the chair. I asked her what she was doing and then looked to my right to see my chemo sister, Lisey, walk in. What a surprise! These two had been scheming this for some time. Lisey had travelled quite a distance to join me for my last chemo. She also visited some other friends but I’m happy to pretend it was all about me. Jenni missed taking a photo of the expression on my face when Lisey walked in, but this one was taken soon after.

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OMG Lisey! What are you doing here?

I was then showered with gifts; flowers, a cardigan and pyjamas (which I would spend the next few days in) from ‘the girls’ and from Lisey, some chocolates, moisturiser and a T-shirt which she had been up all night inscribing (one for me and one for her). The presents also came with very thoughtful cards.

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Me with all my presents.

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And my very special T-shirt, hand inscribed by Lisey.

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The card from ‘The Girls’, written by Jenni of course, as she is the only referred to as the ‘fave’.

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Outside of the card from Lisey.

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And the inside. ‘Happy Fuck Off Treatment Day’ alright!

I was delivered the standard lunch of sandwiches and soup that day, which I decided to hold on to for my guests, so I could take photos of them eating it. My hot lunch, ordered by Jenni, came soon after, and they ate some of that too.

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Lisey couldn’t quite believe the food you get served in a private hospital.

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Tucking in to the cancer patient’s lunch.

All the excitement made chemo go rather quickly. Before I knew it, this was displayed on the infusion pump that was pumping the chemo into me.

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That’s right folks. One minute of shitty chemo to go.

When the alarm went off to indicate that the last drop of chemo had gone in, Lisey pulled out party whistles and streamers. She had come well prepared.

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The last drop of chemo had gone in, so it was time for the PICC line to be removed. Or was it? My nurse informed me that she had spoken to the nurse in charge and she said I needed to keep the PICC line in for another week. I would need to come back for a blood test to see if I needed more chemo. For a second I was a patient and I believed her (she was serious, this was not a joke) and my reaction was “What? No way!” Then I put my doctor hat on and thought about it. There is no blood test for lymphoma that tells you you need more chemo. My next test was a PET scan on 28th January and the results of that would determine if I needed any more treatment. I would not be having any more treatment in January so I was not keeping the PICC line in just in case I needed more treatment in a month. So, once again I put my foot down. I wasn’t having a bar of it. I politely (I think) but forcefully told the nurse that there was absolutely no reason for the PICC line to stay in so it would be coming out…..now! She then spoke with another nurse and told me she would take it out as long as I understood and accepted that I would need to be cannulated if I needed more treatment. Understood and accepted! Get it out!

I did find it kind of amusing that I got to be the annoying doctor as a patient one last time. These nurses had tried to delay my chemo due to neutropaenia and I wasn’t having that, and now they were trying to make me keep my PICC line in when it wasn’t necessary. I wasn’t having that either. I did spare a thought for the poor patients who just accepted everything they were told because they didn’t know better. So, the PICC line came out and it was a very simple procedure. It was simply pulled out. I expected a bit of bleeding and thought I’d need my arm bandaged to apply some pressure but there was not a drop of blood and a tiny dressing was put over the hole in my arm. My reptilian skin was very thankful to be exposed to some air.

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The PICC line coming out. I’m not sure if the look on my face is because I’m very happy it’s coming out, or if I’m saying “take that biatch, I got my own way again”.

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Disinfecting before the big pull.

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And it’s out! Woo hoo!

The end of chemo and the removal of the PICC line was followed by a lot of fist pumping.

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I wasn’t the only one who was happy that chemo was finished.

I then got changed into my new T-shirt and had some photos with my cancer sister.

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Two buddies, kicking cancer’s butt in 2013.

I gathered my things and was about to leave when one of the nurses asked me if I would like the nurses to sing me a song.  Of course I would! I don’t think you get this sort of special treatment in the public health system! (Make sure you click on the arrow to watch the video).

I said my good byes and made my way outside for one more cancer selfie with Lisey.

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I then went to Dan Murphy’s and retuned with a couple of boxes of wine and some chocolates for the nurses. I hoped I never saw any of them in that day infusion ward again, (so yes, I walked down that corridor again) and I’m pretty sure the feeling was mutual!

So that was my last chemo session, for 2013 at least, hopefully for ever. It wasn’t quite what I expected. I wasn’t expecting to celebrate and I must say, in the TWELVE times I’d rocked up to have chemo, I hadn’t seen anybody celebrating a last chemo at all, and there must have been a few of them. It was actually almost fun. Weird. I think Lisey, having been in the ‘having my last chemo’ position herself, knew what needed to be done to make it memorable in a very pleasant kind of way. So thank you Lisey! And thank you Jenni for coming to nearly all of my twelve rounds of chemo with me. Bring on 2014!!

I felt pretty good for the rest of the day. I think I was on a high. I did a bit of running around and I felt OK. That night I started planning my life like I didn’t have cancer anymore. I booked a holiday to Bali, as did several other members of the family. I bloody hope I make it to Bali this time. I will make sure I do. I also booked a trip to New Zealand for a friends 40th. I knew I was taking a bit of a risk booking these holidays as I could potentially need more treatment but I think I just needed something to look forward to. If it all goes pear shaped, I will deal with it then.

The next day was New Years Eve and it was very quiet. I spent the evening in bed but I managed to stay awake until midnight watching the fireworks on TV so I didn’t feel like a complete loser. I think I needed to be awake to give 2013 a massive kiss goodbye (or kick up the behind goodbye) and give 2014 a very happy welcome! I even got to wake up the next day feeling like I had a hangover without going anywhere near alcohol. I was pretty tired for the rest of the week, more tired than I had been after previous rounds of chemo, so I just took it very easy and rested a lot.

13th January was a particularly nice day, as that would have been the day I would have my next round of chemo, if I was still having chemo, but I wasn’t. It seemed quite fitting that the next day, 14th January was my birthday, so I could celebrate that and the fact I didn’t have chemo the day before. It was just a mini celebration however, as until I have the PET scan, I don’t know if it’s the end.

I don’t know if it was chemo brain or fatigue or something else, but I could not decide what to do for my birthday – go out for tea or have friends and family over to my place for tea. I ended up deciding the day before, to go with having people over to my place as it was a forty something degree day so I thought my pool might come in handy, and it did. Fortunately, even with such short notice, the attendance was good. I drank champagne and made (or assembled) myself an ice cream cake. Former Fav Uncle Noof (the one who didn’t sign up for the walk because lawn bowls is more important than walking with his niece with cancer) was invited as I needed someone on the BBQ. There you go Uncle Noof, you got your blog mention!

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(Mini) celebrating in style.

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The ice cream cake.

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Former Fav Uncle Noof on the BBQ.

The rest of the time, which could be called BPS (before PET scan), was pretty much spent taking it easy, enjoying time with my kids and enjoying the fact that I felt a bit better each day and there wasn’t another hit of chemo. I spent a couple of days in Phillip Island with my kids, sister and cousin, and their kids, and enjoyed school holiday activities with my kids such as picking strawberries, going to a farm and a dinosaur world. I even made it to the Australian Open one day.

Not to be outdone by my chemo sister Lisey,who travelled several hundred kilometres to be with my for my last round of chemo, I travelled a 700 km round trip with Ev to watch Lisey kick it in a triathlon. I must point out that my dear friend Ev drove all that way (except for the bit between my house to his) with me in the passenger seat chatting away.  He did his fair share of chatting too, and I won’t mention his upset tummy. Lisey had completed this triathlon one year earlier, days after being diagnosed with breast cancer. In 2014, after 10 months of treatment, she did it again to say “Up yours cancer. I’m back!”

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Ev and I, there to watch Lisey kick it. And she did!

What toll has 12 rounds of chemo taken, almost four weeks later?

  • I get tired easily and feel like I just have no reserve. The activities I have described above probably sound like I’m living a fairly normal life, but after most of those, I would come home for a nanna nap, or at least attempt to have a nanna nap (very difficult to do with children in the house) and I would be pretty exhausted the next day.
  • The chemo brain is persisting. I got a phone bill the other day and I was in credit. Why is that? Because I paid the last bill twice!
  • I have skin changes which I’ve described previously. Areas of brown discolouration. These are more evident to others now, as with the weather warming up I’m wearing T-shirts and singlets so they are exposed. Reactions have ranged from people thinking they are bruises or scratches to Cousin Sonya telling me she thought it was dirt and she had spent the whole day wanting to wipe it off.
  • The peripheral neuropathy or ‘dysaesthesia’ in my hands is still there. It got a bit worse after my last chemo and even started affecting my feet. The burning pain became almost constant and there were things that were difficult or that I couldn’t do because if pain, like opening bottles. Things like that made me rather frustrated! I think it’s improving now, however.
  • I have a pretty good covering of hair on my head now as I never went completely bald. I wear scarves less often now. I have progressed to sun hats, or sometimes I expose my head. My eyebrows thinned but I didn’t lose them completely. Same goes for my eyelashes. I got to the point of almost being able to count the lashes on my lower lids.
  • I’ve finished up a few kilograms lighter than I started – now that’s a positive!

That’s just the physical toll. There’s also an emotional toll and a toll on those around me.

In the last week, an awesome young woman signed up to follow my blog and I have now signed up to follow hers. Her name is Kara and she has very recently been diagnosed with Hodgkin’s lymphoma. In fact, she had her first round of chemo on Friday. You can read her blog here. I am so glad she found my blog (and I subsequently found hers) which she tells me is informative and helpful. I hope I can continue to help her in the months ahead. When I started my adventure, I wasn’t able to find blogs written by people who had very recently gone through or were currently going through the treatment of Hodgkin’s lymphoma. I probably wasn’t looking hard enough as someone else has signed up to follow my blog who was diagnosed with Hodgkin’s lymphoma about a month before me, and was the same stage as me! (I think she also started her blog late, like me). She has recently had her post treatment PET scan and is in remission! You can read her blog here. I need to go back and read all of hers.

It is interesting to read these blogs written by people from other countries. Treatment appears to be much the same around the world but there is a difference in follow-up. The second blog I mentioned is written by someone from the UK. Over there, you don’t get a PET scan after 4 rounds of chemo to make sure it’s working. In America, after achieving remission, you get 6 monthly PET scans for a few years to make sure you’re still in remission, or if you’re not, to pick up a relapse early. My haematologist has already told me that is not the case here, which is why I think I might develop and intense itch every 6 months (assuming I achieve remission in the first place) so I can get a PET scan.

So, approximately four months after starting this blog, which was two months after this adventure began, I am finally up to date. Just in time for my post treatment PET scan on Tuesday. How do I feel about the PET scan? To be honest, I haven’t been giving it a whole lot of thought. In fact, I asked a school mum if her kids would like to have a sleep over at my place on Monday night or come over for a swim on Tuesday as it is going to be hot. She reminded me I had my PET scan on Tuesday so neither of those were a good idea.

Based on my PET scan after four rounds of chemo, which showed a good response, this one should be negative, but there are no guarantees. If it is negative, that is awesome. It means remission. Then I just have to hope it doesn’t come back. But I am prepared for a positive result too, as I know that is a possibility. I don’t really know what that will mean in terms of further treatment, probably a stem cell transplant, but I’m not thinking about that too much. I do know it will probably mean I can’t do the walk I have signed up, but not yet started training for, and the holidays I have booked might be problematic! I know everyone is counting on a negative result and I honestly think I will cope better with a positive result than my family and close friends. I think I’ll be the one reassuring them.

I texted my radiologist friend the other day, just to make sure he was lined up and ready to give me same day results. This little black duck is not waiting a week for those results. I let him know that I was prepared for a positive result, just so he wouldn’t feel like he was breaking devastating news to me if it is positive.

So, the blog posts will be up to date and live from now on. The next one will be on Tuesday with the results of my PET scan. Hopefully there won’t be too many more posts after that and my adventure will come to an end, the end of having cancer at least.

Well, true to form, I managed to write a lot of words in a post that apparently did not require many. 3284 to be exact! No wonder it took me so long to catch up.

44. Chemotherapy – round 11

Monday 16th December to Sunday 29th December

There was no assembly on Monday 16th December, which meant I could get into hospital earlier and start chemo earlier. It begs the question, ‘why didn’t I just skip assembly and get into hospital early every Monday?’  It’s not like assembly is compulsory for parents, not even for prep parents. Something about a mother’s guilt I think. My daughter wanted me to go and since I was missing a lot of other things with her, it was the least I could do.

I didn’t wake up feeling nauseated which suggested to me that I didn’t have ‘anticipatory nausea’ last time. Maybe it was those prawns. I didn’t have much of an appetite but I wasn’t nauseated. A good start. Now I know some of you are wondering why I used the word nauseated instead of nauseous. Nauseous actually means to make someone feel sick, so if I feel nauseous, I feel like I’m making other people sick. An interesting little tit bit for you.

First stop was the day infusion ward for a blood test and then upstairs to see my haematologist. Jenni came to this appointment too. She loves to sit in and see how little sympathy I get from him. I mentioned that I’d had a cold which I hadn’t been able to shake for the past few weeks.  He asked if I’d had any fevers. I said no, my temperature had only been up to 37.6. That hardly qualifies as a fever so I didn’t think he’d bat an eyelid but he actually pulled out his stethoscope and listened to my chest and even looked at my throat, using a ice pole stick to depress my tongue.  I can’t remember that last time a doctor did that to me, must have been when I was a child.

He felt my neck for lymph nodes and then moved away to wash his hands.  I was sure he hadn’t felt a couple of nodes I had noticed so I pointed them out to him to make sure he felt them. One was about in the middle of the right side of my neck. He felt that and said “yeah, that’s about 1 mm”. The second node was behind the medial (that’s towards the centre of the body) end of my collar bone. He felt that one and said, “yeah, that’s about 1.5 mm”. “Not impressed?” I asked. He shook his head. I had felt that lymph node behind my collar bone a couple of weeks earlier while I was carrying my hand bag over that shoulder. I could only feel it when I was in certain positions (like with a hand bag over my shoulder) so I didn’t know if it had been there all along, or if it had just popped up. I wasn’t itchy and the expert wasn’t impressed so best not to worry about it.

My haematologist had told me very early on that enlarged lymph nodes in the type of lymphoma I have (nodular sclerosing Hodgkin’s lymphoma) may not necessarily disappear with treatment because they contain a lot of scar tissue; so the cancer may go but the scar tissue will remain and the lymph node will remain enlarged. This is one of the reasons for doing a PET scan. You could do a CT scan and that might show enlarged lymph nodes, but you need to the PET scan to determine if the enlarged lymph nodes contain cancer or just scar tissue.

I told him again about my hands and the burning pain I’d been experiencing. It was getting worse but it wasn’t constant. I told him that my hands were very sensitive and things hurt that shouldn’t hurt, like when I touched something rough or a bit spiky, it hurt, and I know that a few months ago it wouldn’t have hurt. My temperature perception was also a bit haywire. Things felt hot that weren’t hot. I gave the example of recently cooking a sausage for my son. I cut it up and gave it to him. He put a bit in his mouth and spat it out so I wondered if it was too hot. I felt a piece and it felt really hot.  My daughter picked up the same piece and said it wasn’t hot so I put it in my mouth and it actually wasn’t hot. He asked again about movement/motor function and I said that was OK. He said I had ‘dysaesthaesia’ (that’s a mouthful – it’s a fancy way of saying abnormal sense of touch) and it was due to the vincristine. Since there were no motor problems, he was happy to push on with this drug in my cocktail. He said the dysaesthesia would be reversible (slowly, over months) which was interesting because one of the nurses told me it wouldn’t be.

I also asked him if the G-CSF actually prevented neutropaenia, because I had become a bit slack in my approach to life as neutropaenic person, assuming that I wasn’t actually neutropaenic because of the injection (eating prawns, getting pedicures – only two in five months). He told me that it might prevent neutropaenia or it might just shorten the length of the neutropaenic period. We didn’t really know because I was only having blood tests at the end of the two week cycle.

I told him about how forgetful and vague I’d been at times and told him about an upcoming court case I am supposed to give evidence in at the Supreme Court. I said I didn’t know if I’d actually be sharp enough to give evidence. He talked about chemo brain and how it is a real entity! I was a bit surprised by that. I didn’t think he’d really believe it was real. Due to chemo brain, I can’t actually remember what he said about it but I think he said things should improve once the chemo had finished and I’d just have to see how I was when the court case came around. I’m prepared and have lined up a colleague to give evidence in my place if my cognitive functions don’t improve.

My haematologist then started talking about my PET scan at the end of treatment, which would be 4 weeks after my last chemo. What? 4 weeks? I had assumed it would be 10 days after the last chemo, like the restaging PET scan I’d had after 4 rounds of chemo. 10 days after was good; not only because it meant I would know sooner if I was in remission, but I would also know a few days before my birthday so it could be a double celebration if the scan was negative. 4 weeks after my last chemo would be after my birthday and quite a wait. Bugger!

He asked me what my favourite day of the week was and for some reason I said Thursday. I think I was thinking that at least my son would be in childcare so that would be one less child to have looked after while I was having the scan. But I don’t think there would be any shortage of volunteers to look after children so I can have that PET scan which will potentially signify the end. He looked at his calendar and counted 4 weeks from 30th December (my last chemo!). The closest Thursday was 30th January, so that would be the day. Then Jenni reminded me that that was the first day back at school so it might not be such a good choice of day. Then we decided to forget about my favourite day and just go 4 weeks after 30th December. That would be Monday 27th January – Australia Day public holiday. Right, Tuesday 28th January, 2014, was the day.

He started filling in the paperwork for the PET scan, CT scan and blood tests. I thought he was getting organised early given that this was my second last chemo, and not my last, so I asked him if he would be away for my last round. The answer was yes. Quite deductive for one in the midst of chemo brain. He handed the request forms to me and said he would see me a week after the PET scan. It took a little while for that to register and I don’t think it did until I was at the reception desk making the appointment. See him one week after the PET scan. Did he seriously think I was going to wait one week for the results of that PET scan?

As I left the room he wished me well and said “I’ll see you next year and hopefully that will be the end of this annus horribilis. I didn’t know exactly what that meant as I didn’t study Latin, although you almost study Latin when you study medicine, but I got the idea. I have since looked it up and not surprisingly, it means “horrible year” (not horrible bum as I’m sure some of you may have thought it meant; Sonya, Jenni). It is complementary to “annus mirabilis” which means “wonderful year”. I know there are many out there who would agree that 2013 has been an “annus horribilis” and I for one, am hoping for a “annus mirabilis” in 2014.

I went downstairs to be hooked up to chemo number 11. The neutrophils were fine, of course. The room was crowded as the renovations were still underway. I hoped they’d be finished for my last session. The first thing I did when I got downstairs, was to text my radiologist friend to ask him if he’d be able to look at my PET scan and give me a same day result. There was not a hope in hell I was going to wait a week to find out if all this horrible chemo had done it’s job and I was in remission. I certainly pitied the people that didn’t have the connections I did and had to wait for results.

So, it would appear that I haven’t learnt my lesson, after the stress of thinking I had stage 4 Hodgkin’s lymphoma when I got the results of my very first PET scan from the radiologist, rather than waiting to see my haematologist. But I’ve justified it to myself; this PET scan will either be negative (which would be awesome) or not negative and the degree of not negative is irrelevant to me. It will mean more treatment and I can wait a week to find out what that treatment is.

Chemotherapy was pretty uneventful. Due to the early start, I was done by 2 pm, which was an all time record early finish. The highlight of the day was the fact that Jenni ate my lunch as I didn’t have much of an appetite. I was sure not to miss that opportunity for  a photo.

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Tucking in to the cancer patient’s lunch.

When I got home from chemo, the nausea hit pretty quickly and I went straight to bed. Like most people at this time of year, I had a pretty busy schedule ahead, beginning on Thursday, so I could not afford to be too sick with this round. I spent Tuesday and Wednesday in bed, partly feeling average and partly conserving my energy.

On Thursday I dragged myself out of bed to do some xmas shopping, despite my mum virtually demanding that I rest. I thought if I made myself get out and about, I might feel better. I’m not entirely sure if it worked and I’m sure there’s no scientific evidence to back it, but I made it to Santa’s Magical Kingdom that night with my daughter and the fav sis and her two kids. It was good the fav sis came along as it meant she could be the driver. The kids had a ball and I got through the night, so I would call that a success.

Friday 20th December was the last day of school. My daughter had begged me to have her friend’s over for a xmas pool party. Initially I said no, because it was not in my ‘good week’, but then I thought, she had missed out on having friends over for a good part of the year (although there was no shortage of play dates for her at her friend’s houses) due to me being sick, and it probably hadn’t been a very fun year for her, so I decided I’d just suck it up and let her have her xmas pool party. I think there were 10 kids there and apart from one bee sting and one near drowning due to someone not realising they didn’t have their floaties on (with a heroic save from an observant mum who dived in the pool in a split second), I’d say that day was a success too.

And because I didn’t put these photos on Facebook, I thought I should show off the xmas themed food that we made here. Thank you Kate for the inspiration!

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On Saturday morning, I had to go out and get the obligatory Santa photo with the children. As you will see, one of them was quite happy with that but the other one wasn’t! He was giving Santa high fives until he was placed on his knee.

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After the Santa photo, it was home for lunch with a friend and her three children. When they left, I headed to a friends place for a Christmas dinner with a small group of close friends. I hadn’t committed to going to that as I wasn’t sure how I’d be feeling so I was glad I made it there.  Things were going along fine. I was feeling pretty good, I was eating, the kids were having fun. Dinner was served and my sister had made her renowned pomegranate salad. I ate some of that and told her it didn’t taste right, there was something missing (we are very honest with each other). We then decided it was probably my f’d up taste buds from the chemo.

Quite suddenly, I started feeling unwell. I wasn’t sure if I was going to vomit but I just felt unwell. I went inside to the toilet but I didn’t vomit. I went back outside to the table and one of my friends was asking me questions but I could hardly answer them. Then another friend asked if I was OK and said I looked like I’d hit a wall. I said I wasn’t feeling well and would go home. I then felt even more unwell and proceeded into the back yard (because I didn’t think I would make it to the toilet) and vomited! What a lovely dinner guest, vomiting in the back yard. This may be too much information for some, but I am told this makes the story; the dogs ate my vomit, which was quite fortunate really as it was rather large!

I agreed it probably wasn’t wise to drive myself home, especially because my son would be in the car too (my social butterfly daughter was staying for the party), so the fav sis drove me home after calling our mum who was enjoying a night at her own home, to summons her back to my house to look after my son, and return the fav sis to the party. Once again, so many people inconvenienced by this bloody cancer.

I went to bed when I got home, where I began to feel freezing cold and started shaking/shivering uncontrollably and my temperature went up to 38.1°C, but being the complacent rebellious cancer patient that I am, I didn’t ring the hospital. I popped a couple of panadol and hoped it went down, and it did. I really have no idea what that was all about. Perhaps someone was trying to tell me to slow down! Well to that person, I say “fuck you” and “fuck cancer!”, especially because this is the dessert spread I missed out on!

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Spewing I missed this……literally!

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This is the red velvet star cheesecake that Lisa, the host, has promised to make for me since I missed out on it. I thought if I mention that in this blog, she will surely keep her word.

On Sunday I had that very familiar feeling of being completely drained. It was a simple vomit but I found that I had just had no reserve and little things easily took their toll on me. It would have been easy to spend the day in bed, which is what most people suggested I do, but there was a shopping event on at the retail store one of the members of ‘The Good Tittie Team’ works at, to raise money for the team. Between 12 and 3 pm, 20% of all sales would be donated to our team! So, I simply had to go. I was only planning to go for about 15 minutes, but 2 hours and $300 later I finally left, only to find out that I had missed Hugh Jackman by a matter of minutes!! Unbelievable. His wife and mother (or her mother, not sure which one) made a purchase  and supported our team, so we might as well say Hugh Jackman supported our team and put his name on our Tshirts as a sponsor. What do you think?

Well, that was the end of a rather busy post chemo week with an abundance of social events. Despite attempts to foil my plans, I was rather pleased that I made it to every one of those events.

The next week, being the week of Christmas, was also very busy, but it was my ‘good week’ so all was well. Monday and Tuesday were spent getting ready for xmas lunch at my house on Wednesday. Everyone was assigned tasks and a lovely day was had by all. Special mention must go to my sister-in-law, Amanda (member of ‘The Good Tittie Team’, breast cancer arse kicker) for her delicious ham. I think she had now earnt herself that job every year.

Boxing Day was the wog Christmas get together, hosted by fav sis, and instrumented, as always, by the President. She got a sticker on her car that day (The President), you know those car stickers I have referred to several times, yet still not a single order has been placed by blog readers. You can order them at http://www.myracecarsticker.com.au and you can have what ever you want on your sticker! I really thought F#*K CANCER would take off.

Friday and the weekend were pretty cruisey. My daughter went to her cousins birthday party on Saturday and came home with a scar to match mine. Funny, cute, thoughtful and supportive all in one.

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The matching scar.

The LAST round of chemo was not far away.

43. Chemotherapy – round 10

Monday 2nd December to Sunday 15th December

After the excitement of attempts to delay my round 9 chemotherapy, round 10 was back to the same old, mundane, uneventfulness, which is good.

There was the usual Monday morning routine; dropping my daughter at school, staying for assembly and then meeting Jenni at home for the trip into hospital. There was something a little bit different that morning, however. I woke feeling nauseated. Not a good start feeling sick before the chemo has even been infused. I’d eaten prawns the night before, which is probably not a wise thing to eat when you’re supposed to be on a ‘neutropaenic diet’, but I figured I wasn’t really neutropaenic anymore thanks to the G-CSF injections.  I texted everyone else who’d eaten prawns to see if they felt sick too.  Nope, just me.  The possibility of anticipatory nausea crossed my mind.

Just in case you don’t know, this is the definition:

Anticipatory nausea and vomiting is a learned or conditioned response. It appears to be the result of previous experiences with chemo that led to nausea and vomiting, in which the brain pairs the sights, sounds, and smells of the treatment area with vomiting. Anticipatory nausea and/or vomiting starts as a person prepares for the next treatment, before the chemo is actually given. The brain expects that nausea and vomiting will happen like it did before. About 1 in 3 people will get anticipatory nausea, but only about 1 in 10 will have vomiting before the chemo.

I wasn’t convinced that’s what it was as I didn’t really think nausea and vomiting had been a huge problem for me, and I hadn’t even hit the treatment room yet. But it was possible. I have learned how powerful the brain is. When I had my initial CT scan, I saw what I thought were lymph nodes the size of golf balls in my neck on the screen in the CT room. After that, my neck felt very full. Then when I saw the haematologist, who made me feel like I just had a cold, my neck felt normal again.  The biggest lymph node in my neck was only about 2 cm, which is a decent size for a lymph node, but certainly not golf ball size.  In hindsight, I think the reason I thought I saw golf balls was because the whole image was enlarged! So my brain was also the size of a large watermelon. Perhaps I wasn’t thinking clearly that day.

So, off to hospital we went.  First stop was the day infusion ward for a blood test. I mentioned the nausea to the nurse and she also raised the possibility of anticipatory nausea. I then went upstairs to see my haematologist.  Despite not feeling great, I was smiling when I entered his room.  He asked why I was smiling. Was it because I could see the end? I think it was. He also asked me what treatment number I was up to. I said, “Number 10 of you’re me, day 15 of cycle 5 if you’re my doctor”.

I also told him about the nausea and asked if it could be anticipatory. He smiled and said “maybe” which I’m sure means that’s what he thought it was. He asked about my mouth again, and if I was getting ulcers. I asked him if I should be expecting them at this point in treatment but he said probably not because they are associated with neutropaenia and the G-CSF was taking care of that.

I asked him that day about whether I should expect long term heart and lung problems as they can occur with the chemo drugs I was having. Bleomycin can cause pulmonary fibrosis, organising pneumonia and hypersensitivity pneumonitis. Adriamycin can cause cardiomyopathy, which can be fatal, but is generally dose related (so I should be OK if I don’t have too much).

The reason I was asking these questions was because at a previous appointment with him, he seemed to think me doing this 60 km walk in March wasn’t such a great idea, which surprised me.  I wanted to know why he thought that (other than the fact I would have finished chemo only two months before and hadn’t done any exercise for months, of course). Was it because I should be expecting long term heart and lung problems? He told me I was young and healthy (except for the cancer bit) and that the treatment for Hodgkin’s was usually well tolerated in young, healthy people.  So, I guess that was a no.

I didn’t ask him specifically about the walk that day because I didn’t want him to tell me not to do it (I’ll broach that subject again closer to the time). It’s a bit like drinking alcohol; I have had the occasional glass of wine towards the end of the second week of my chemo cycle when I’m feeling relatively well. People ask me if I’m allowed to drink alcohol. I assume the odd glass is OK but I haven’t asked him just in case he says no.

I asked him why he hadn’t done any baseline heart and lung function tests prior to chemotherapy, as these are often done to ensure the function is normal prior to starting treatment with drugs which can cause damage. He said he does baseline tests less often these days and basically because I’m young and “healthy”, they were bound to be normal. Yeah, a bit like that bone marrow biopsy, you know, the one that took three goes at drilling into my hip to get the trephine (core of bone). He knew that would be normal but he still ordered it and it bloody hurt! Heart and lung function tests are very painless. Oh well, he is the doctor and I am the patient.

I headed back downstairs for treatment. Renovations were underway in the day infusion ward so parts of it were blocked off and it was even more crowded than usual. The layout of the room had changed so that the naughty corner was now at the opposite end of the room. I was in the naughty corner again. I was informed that the renovations would be completed just in time for my last treatment, which was nice.

Chemo was pretty uneventful. I had two lunches delivered; a hot lunch and the sandwiches, but I didn’t eat either of them as I wasn’t feeling well. The highlight of the day was a visit from Karine, my old chemo buddy who had finished her chemo way back on 23rd September when I was hooked up to round 5. She told me that she still wasn’t feeling normal but that people expected her to be absolutely fine because she’d finished chemo and she didn’t have cancer anymore.  She’d been to see her doctor that day, who, I might add, is a female, and she told Karine she was doing too much. When I had seen the female doctor who was covering my haematologist when he was on holidays, around the time of my PET scan, she told me that I wouldn’t feel normal again until about 6 months after I finished chemo. I think everyone expects you to return to normal pretty quickly and as a patient, you probably expect it too.  Obviously I will feel a hell of a lot better when I’m not being hit with chemo every two weeks, but it does sound like it will be a long road back to normality, not that I can remember what normal feels like.

The week after round 10 was not too bad. I went to bed very early on the Monday as I was already feeling drained. I saw a story on TV that night, about a girl named Sarah, who was diagnosed with Hodgkin’s lymphoma in 2009, at the age of 28. Of course, she was told her prognosis was great, but four years later, after more types of chemotherapy than she can remember, 3 rounds of radiotherapy and 2 stem cell transplants, she still wasn’t cured or in remission. She had exhausted all conventional treatment options so her doctor had suggested Brentuximab, a new drug which has shown promising results in the treatment of Hodgkin’s lymphoma. I won’t go on too much, but this drug is not listed on the PBS and so it is very expensive. I decided then that getting Brentuximab on the PBS might be my next project after the walk to end women’s cancers. Was that just because I might need it one day?

I spent Tuesday in bed but by Wednesday afternoon, I was able to drag myself out to take my daughter to her swimming lesson. I also dragged myself out of bed on Thursday morning, dry retching along the way, to take my daughter to school and do reading as it was the last day of reading for the year and I’d missed it the day before (I usually did Wednesday’s – which became fortnightly after chemo started). I even went to the shops on Thursday and was feeling quite good by Friday. My daughter had a school disco on Friday, with a Rubik’s cube theme. I had ordered her a costume to wear, from eBay. After I purchased it, I realised it was coming from England, so it arrived about 3 weeks after the disco. Yep, chemo brain.

Saturday was a busy day, and I wasn’t feeling particularly energetic, with a 40th lunch (Karlene’s – daughter of The President) and then my daughter’s acting concert in the city. At the concert, was a lady who had coached me in netball over 20 years ago, and it had been about that long since I’d seen her. I spoke with her and she told me of a girl I played netball with all those years ago who had also been diagnosed with Hodgkin’s lymphoma, but that was a long time ago when she was about 18 years old. At the time, she was playing netball for England (and played in the Olympics) and the whole team shaved their heads to support her. Like Sarah, she too battled the disease for about 3 or 4 years, going in and out of remission, but in the end the outcome was good as she is alive and well today. In the space of a week, hearing about two young people with this ‘good cancer’ who lived with it for several years did make me wonder if that’s what I had to look forward to. Now family, don’t get all stressed thinking that I’m stressed and think that’s what’s going to happen. It was just interesting timing hearing these stories as I was approaching the end of my treatment. It’s a possibility but I’m not stressed. It’s probably one of the reasons I am happy to be approaching the end of chemo, but not excited, because I don’t really know when the end will be.

The rest of the week was fairly uneventful, except for Friday. Whenever I went out, I was constantly being told, “You look well!”, and this was said with a tone of surprise in the voice. I’m not sure what people expected to see; a shrivelled up cancer patient? I would also hear stories about people who thought I looked well, but didn’t want to say anything in case it was the wrong thing to say. For the record, if you think I look well, you can tell me. It’s not the wrong thing to say. You can also tell me I look like crap if you think that is the case. The fact is, when I don’t feel well and probably don’t look well, I don’t go out. I’m in bed. So if I’m out, it’s because I’m feeling pretty well, unless it’s something I have to drag myself to. I think people are surprised because they know there are times I am not well but I’m only seen out and about when I am well, so maybe I should start posting photos of myself when I’m curled up in bed, just to prove that I really am unwell sometimes.

So, Friday 13th December was the annual revue at my work. It is the prelude to the Christmas party where staff members gather and do various acts, usually trying to be funny, sometimes unsuccessfully. Pathologist participation is usually quite poor but this year my dear friend, Dr Yeliena Baber, stole the show by performing an act which ended with her having her head shaved, to support me. She raised over $3000 for ‘The Good Tittie Team’ in the process! Yeliena was understandably quite nervous about becoming a skinhead but I reassured her she would like it and her children would not be scared of her. As it turns out, I think she loves it, and the reactions she gets from people, and her children are very proud of her. Yeliena recently got a sleeve tattoo on her left arm (there’s quite possibly another name for them but I don’t know what it is, and I’m sure you know what I mean). She had shaved her head for me but I wasn’t prepared to get a tattoo so I donned the fake sleeve tattoo I had worn when I dressed as a punk for the trivia night in September. I never thought that would come in handy again so soon, and it was a nice cover for my PICC line.

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Two proud friends rocking a skin head……and a tattoo.

I thought it was interesting at the Christmas party that followed, that Yeliena had her head exposed and I had mine covered with a scarf, and I had my “tattoo” exposed and she had hers covered with a jacket.

I also found it interesting how different shaving your head makes you feel when you don’t have cancer as opposed to when you do. I think Yeliena felt brave, proud, empowered and generally good. And I’m glad she did! It was a huge thing to do (I was proud of her!) and I wouldn’t want her to have any negative feelings about it, but shaving your head when you have cancer just doesn’t conjure up the same feelings.

In keeping with what I hope is a bit of an educational theme in this blog, I also need to tell you about something that somewhat pissed me off after the head shaving. Everyone thought what Yeliena did was amazing, including myself, but so many people felt the need to tell me they would NEVER shave their heads. I don’t think anyone with cancer would want or expect any of their friends so shave their heads (but would be truly humbled if they did) but I just don’t think it’s necessary to point out that you would NEVER do it. To these people I felt like saying, “just be grateful you have the choice and that you don’t have to endure all the other crap that comes with a diagnosis of cancer”. Also consider that your hair will start growing back immediately, unlike Lisey for example, who, by  her own admission, resembles George Costanza almost one year after shaving her head and six months after finishing chemo. If you are one of the people who would never do it, why is that? Are you really that vain? Do you think I look ugly with no hair? As I said to Yeliena, I haven’t seen a bald woman who doesn’t look good. Given that one in three people will be diagnosed with cancer by the age of 85, you just might not have the choice one day, so why not give it a go when you are well and you can enjoy it?