Yes, I’m still alive

It’s been a really long time between blog posts. I’m over two years behind now. Some days I think I’ll get back into it and catch up, other days I think I can’t be bothered because I’m a bit bored with this cancer gig. I still don’t know if I’ll ever catch up but I thought I’d post a little update now, and there are a few reasons for that. One is that a few months ago, I randomly contacted an old friend of mine who I hadn’t spoken to for ages. He replied saying that he’d been checking my blog regularly and hadn’t seen any new posts so he thought the worst. So this post is basically a quick (my sort of quick) update for the people who aren’t on Facebook, like Sally and Ev, because I posted this on Facebook two days ago, on the anniversary of my admission to hospital for a stem cell transplant. It’s also for people like my friend, who’ve been checking in and wondering what’s happened to me, to let them know that I’m still alive!

I almost didn’t remember how to log in to this blog again, but when I did, I was reminded that I have a lot of blog posts that I’ve written a few points for, so I really should get back to them one day. Jenni (fave sis) also has a celebrity blog post that she started writing over two years ago, so I should give her her five minutes of fame. I also checked the stats page, expecting it to be blank, but even after writing nothing for over a year, this blog is still getting a few hits every day.

Below is a summary of the past two years, but there’s still a bit of information missing between the last blog post and the day I was admitted to hospital for the stem cell transplant. I will try to fill all that in one day….maybe.  When I talk about The Lymphoma Nurse Project below, if you haven’t heard about it, it’s just a little goal I’ve set myself to raise $100,000 this year to fund a full-time lymphoma nurse, based in Melbourne, in 2017. This is part of a bigger plan of Lymphoma Australia’s to have lymphoma nurses in every state in Australia. I am taking up the Melbourne challenge.

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Two years ago today, I arrived at hospital for a stem cell transplant. I was already weak and a shadow of my former self after nearly a year of chemotherapy and an infection that nearly killed me. I knew the stem cell transplant wasn’t going to work but I had been convinced it was my best option at the time.

I was in hospital for nearly a month. I missed my daughter’s birthday and my sister’s birthday (well, that one came to me) while I was given what is described as a lethal dose of chemotherapy – chemotherapy so strong that it would have killed me if I wasn’t “rescued” by getting my stem cells back. That in itself was horrendous enough, but it was made worse by sharing a bathroom with a man who urinated all over the toilet seat, (Every. Single. Time.) and left his clothes in the bathroom when he’d lost control of his bowels. I had food stolen from the fridge (not that I ate much), body wash stolen from the bathroom, a grad nurse whose idea of sterile technique was far from ideal (when I had a white cell count of zero). Horrendous doesn’t really cut it. When I finally got out of hospital, on the days I had the strength to shower, I would throw up because my heart rate would soar to about 160. It was brutal.

It was no surprise to me when I got the news that the stem cell transplant had failed. I had lymphoma in my neck, chest, lungs, bones. Everywhere. It was a massive FU from that cancer. What I didn’t tell people at the time was that according to published studies, people who relapsed within 60 days of a stem cell transplant lived on average for another 1.2 years. So according to the data, I should be well and truly dead by now. But according to the data, I also should have been cured by the first 6 months of chemotherapy. So I’ve always thought, fuck the data.

I then had to raise a lot of money to get a new drug on the Hodgkin’s lymphoma scene and I was absolutely blown away by the support from friends, family and strangers. Nobody knows that there was someone in my family who was just sitting back, watching, and was ready to jump in with whatever I needed to finish the course of treatment when all of the generous donations ran out. It never got to that because soon enough, that treatment stopped working.

I always asked a lot of questions and never understood why Australian’s couldn’t access drugs that were freely available overseas. My haematologist at the time mentioned a trial for a drug I was constantly asking him about. I didn’t need it at the time, but I got in touch with the head of haematology at the hospital where I was told the trial would be running. Best decision of my life!

When the previous drug stopped working, I went to see this haematologist for a second opinion because I wasn’t happy with the advice from another haematologist (not the one who told me about the trial; I have a lot of haematologists in my life). He quickly became MY haematologist and I haven’t looked back. I had to wait 6 months for the trial to start, just letting my lymphoma spread from my neck and chest to being all over my body again. But after just 4 cycles of this new trial drug, a drug that isn’t chemotherapy, I was either in remission or very close to it. A year later, I’m still in that situation with regard to the lymphoma, I’m back at work, I can look after my kids, my mum has moved out, I am no longer the skinny sister and I’m on the board of Lymphoma Australia trying to make a difference for all lymphoma patients; trying to prevent others from going through some of what I’ve been through (there were a few bad decisions along the way but I won’t go into them now).

Thanks to my new haematologist and Lymphoma Australia, I have been able to pass on information about trials and compassionate access programs to other people with Hodgkin’s lymphoma. Information their haematologists have scoffed at and told them they were wrong. But I insisted and they insisted and they got on the new treatment – people who had been told to go home and die, a boy whose mother thought she was going to see him die before her eyes on the very day he started the new treatment, a friend in his 20’s who was offered palliative chemotherapy. The stories are truly amazing.

This, my friends, is why I am so passionate about fundraising for a lymphoma nurse (who won’t be a grad nurse). Someone who is 100% dedicated to lymphoma patients and their families and can help them navigate the system and access THE BEST treatments, not just what is available in their hospital. My goal starts in Melbourne, but we need a nurse in every state and we will get there.

A few boring stats for you – lymphoma is the fifth most common cancer in Australia. Someone is diagnosed with it every TWO hours and someone dies every SIX hours. It claims as many lives in Australia as skin cancer, yet a lot of people have never heard of it and would have no idea what the symptoms are. Do you know?

I honestly believe that I would not be where I am today if the mistakes in my treatment were not made. I could have been cured a long time ago. But mistakes were made and I could have died, but I didn’t. I was “lucky” to be able to find out about and access the best available treatment. Not everyone can do that themselves. If you believe everything happens for a reason, then I guess I wasn’t cured with first line treatment so my eyes could be opened to this whole other world. It’s shit and it’s unfair and it’s heartbreaking at times but it’s so bloody inspiring and exciting too.

Please support me and my Lymphoma Nurse Project. https://www.facebook.com/melbournelymphomanurse/… Simply like the page (if you’re on Facebook). Please share it too and ask your friends to like it.

If you’re feeling really pumped, commit to raising just $100 for this project. Join ‘Team Baker’ here https://lymphomanurses.everydayhero.com/au/team-melissa Set up your own fundraising page and spread the word! $100 is easy – if I can motivate just 500 people to do that, then I will be half way to my target. Lymphoma nurses really will make a difference.

And this my friends, is why I haven’t touched that blog (remember that?) for two years. This was supposed to be a short post saying this day two years ago was shit, but I’ve rambled a bit. As I do.

‪#‎fuckyoucancer‬ ‪#‎fuckthedata‬ ‪#‎chemosucks‬ ‪#‎immunotherapyisthenewblack‬‪ #‎lymphomanurseswillchangelives‬ ‪#‎getonboard‬

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My mum, myself and Jenni on admission day. I have no idea why we are all smiling.

52. ‘The Weekend’

Wow! This weekend will be a year behind. Time to get moving.

Friday 28th February to Sunday 2nd March, 2014

‘The Weekend’ refers to ‘The Weekend to End Women’s Cancers’ benefiting Peter Mac, a 60km walk over two days. If you remember back to the days when I was blogging a bit more regularly, you will recall that my friend Lisey and I co-captained a team called ‘The Good Tittie Team’ (so named to tie in with both of our blogs). I don’t really need to say a lot about this weekend, but I’m sure I will. The achievements of ‘The Good Tittie Team’ have been all over Facebook (albeit nearly 12 months ago), and Lisey has written a more succinct summary which you can read here if you want to skip my ramblings.

In the weeks leading up to ‘The Weekend’, (apart from being broken by ridiculously intense chemotherapy) we were busy working as a team. We were sharing money around to make sure every member had raised over $2000 as that was a requirement to be eligible to walk and would also mean we would achieve trailblazer status. I’ll be honest and say we were all getting a bit frustrated by the constant phone calls “encouraging” us to continue fundraising, and we were not at all impressed by the fact that each individual had to raise a minimum of $2000 instead of a team total equating to at least $2000 per team member. For example, I had raised over $5000 but if someone else in my team raised any less than $2000, they would be told they were not allowed to walk. This led to a few heated phone conversations with organisers, and to my immediate family in particular, being politely described as “passionate”.

Achieving trailblazer status meant our team name would be inscribed on a plaque and displayed at the Peter MacCallum Cancer Centre, and we were all a little bit amused by the prospect of the word “tittie” appearing on a plaque. It also meant that Lisey and I, as team captains, would be invited to a post walk recognition event. I was particularly keen on attending that as I had a bit of a bone to pick with the CEO of Peter Mac (unrelated to the walk), who I assumed would be at this event.

On the Friday, our team uniforms had to be picked up and we had a team dinner as most team members had chosen to stay in a hotel that night given the walk started very early in the morning. We had an awesome uniform supplier but he had a bit of an issue with the printer and had to find a new printer who would do the job free of charge. This led to very last minute printing on Friday afternoon. We had a fantastic logo for the front of the T-shirts, designed by Papa Russ, and on the back, we had the names of all the team members as well as logos for businesses and names of people who had generously donated $500 or more.  The layout and digital designing of all of this was painstakingly (painstaking because he had to deal with the indecisiveness of Jenni and myself) put together by Shane from Analog Creative, a good friend of mine and husband of one of the three Lisa’s in ‘The Good Tittie Team’.

Jenni, being the self-appointed uniform co-ordinator, was in charge of picking up the uniforms. Off she went in the early afternoon, for what she thought would be a quick trip to our supplier. The tops were there when she got there but there was a slight problem. The printers had taken it upon themselves to make an executive decision not to print the back of the tops because there were seams on them which they thought made the printing look imperfect. Yes, it did look slightly imperfect, but this was a fundraising walk, not the Olympic games (although you could be excused for thinking that’s how we were treating it). We wanted the names of the team members on those tops and we wanted to recognise our major sponsors. When Jenni told me about this issue, it took her quite a while to convince me she was telling the truth. I really thought she was pulling my leg.

So, Jenni and the supplier drove back to the printers to get the backs printed and of course that took a lot longer than anticipated. Jenni then took everything back to her house to sort out (two tops of correct size and a hat for each walker) and cousin Sonya delivered them to the restaurant we were all dining at, at approximately 10pm! We were all very impressed with the end result.

How good was our uniform?

How good was our uniform?

There had been much discussion and even a poll amongst the team, regarding what colour hats we should wear; black or purple. I can’t even remember what colour won the poll (possibly green) but I was firm in my opinion that they should be purple. And when you’re a captain of a team, with cancer, undergoing chemotherapy, not many people argue with you. As you will see from the photos below, purple was a good choice. In a sea of 1401 walkers, the purple hats stood out and it was easy to find fellow members of our team.

After a decent sleep, the day of the walk finally arrived. I woke up and got out of bed at stupid o’clock, which in itself was an achievement for me since I’d spent much of the past three weeks not really getting out of bed. I didn’t really have a plan regarding how much walking I was going to do, I just knew that I was going to cross the finish line with my team. I also knew I wasn’t going to be able to walk 30km each day, so a wheelchair had been hired so I could still rest if I needed to (and make someone push me!)

So in the early hours (it was still dark) of Saturday 1st March, all of the members of ‘The Good Tittie Team’ (and a couple of thousand other people) converged on the park where the walk was to begin. Surprisingly we all found each other. There was a buzz of excitement. Those who hadn’t been at dinner the night before were given their uniforms, trailblazer ribbons were attached, we ate breakfast and before we knew it, the opening ceremony was underway.

Lisey and I had been invited to be part of a survivors circle in the opening and closing ceremonies. This involved six cancer survivors holding hands to form a circle, and walking up on to the stage. There was a rehearsal on the Friday afternoon which I couldn’t attend but the organisers had said that Lisey could tell me what to do and I could decide on the day if I wanted to be involved. Everything happened so quickly that morning that I completely forgot about the survivors circle so I didn’t take part in it. When they first asked me to do it, I told Lisey I didn’t really feel like a cancer survivor given that I still had cancer and was still having treatment. I felt like I was surviving but was not yet a survivor. Lisey took part in the opening ceremony and they managed well enough with five people in the circle.

There was a mass aerobics session to warm everyone up and then it was underway. We got a photo of our team together and off we they went. You see, I really hadn’t planned this well so the wheelchair was in the car. We didn’t think it was a good idea for me to take off walking in case I didn’t make it very far. Cousin Sonya and I decided we’d go back to the car and drive to the first pit stop and meet the team there, where I could join them with the wheelchair.

Cousin Sonya had originally signed up to do the walk but pulled out as she thought she would be of much better use being a general team helper, being there if I needed anything and looking after my daughter who wanted to be involved in the weekend but obviously wouldn’t have been able to walk 60km. I gave Sonya a bit of hard time when she first pulled out of walking but it turns out she was right about being better used as a helper. Sonya was there if anyone needed anything, she followed us around tooting and screaming ‘Go Good Titties’, she met us at pit stops with my daughter and she could go to the shop if someone needed something.  It was a very wise decision by Sonya, probably the only wise decision she has ever made in her life.

It was at the first pit stop that I experienced one of the MANY highlights of the weekend. A few weeks before the walk (in fact, while I was in hospital having chemo), I received a donation from a stranger. The name sounded familiar and I soon realised it was from the captain of the ‘Walkie Talkies’. The ‘Walkie Talkies’ were the biggest and highest fundraising team across all the walks in Australia. We had them in our sights at one point, thinking we could raise more money than them, but that was a tad ambitious given their team was at least twice the size of ours. Us, ambitious? Never! Danni, the captain, left a lovely message with her donation and said that she’d stumbled across our team page on the walk website and was so touched by the story that she felt compelled to donate.  We exchanged several emails and it turned out she lived not far from me and my chemo buddy, Karine, and one of her friends, Georgie, who Jenni and I had met at my very first chemo session, were also members of the ‘Walkie Talkies’. Small world.

So Sonya, my daughter and I arrived at the first pit stop and I questioned everyone who walked past me wearing a ‘Walkie Talkies’ t-shirt. “Where’s Danni?”, “Where’s your captain?” The support (not just the donation but moreso the emails and messages of support) from a complete stranger was so touching, so I was determined to meet her. Finally, she was pointed out to me. She had also spotted me, on the side of the footpath, wearing a ‘Good Tittie Team’ t-shirt, bald head partly obscured by a purple cap and a wheelchair beside me. “Are you Melissa?” she asked. I nodded. We hugged, laughed and chatted. I introduced her to my cousin but before I even had time to tell her my cousin’s name, she asked “Are you cousin Sonya?” She’d been reading my blog and knew all about favourite cousin Sonya, who at that point was feeling a little bit famous.

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Danni and I at the first pit stop.

 

Then we were on our way again. I walked and someone got left pushing the empty wheelchair. If I looked even the slightest bit tired or short of breath, I was ordered to sit down in that wheelchair and have a rest! I walked a fair bit on that first day, much to the amazement of everybody including myself, but if you ask anybody who pushed me in the wheelchair, I spent quite a bit of time sitting in it too.

My brother pushed me.

My brother pushed me.

My co-captain pushed me.

My co-captain pushed me.

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My cousins pushed me……

.....a lot!

…..a lot!

 

 

 

 

Kate pushed me, and cancer got the bird!

Kate pushed me, and cancer got the bird!

And Daisy pushed me too.

And Daisy pushed me too.

That first day saw us walking through the streets of Melbourne, past the hospital I’d spent a week at recently and would be back at for more treatment in the next week, through beautiful parks and gardens, past lane ways, past Federation Square and the MCG. We also walked right past Peter Mac, the hospital we were fundraising for, where staff cheered us on, high fived us and had photos with us. The pit stops were amazing; all run by enthusiastic volunteers. Some families even made their own pit stops out the front of their houses, serving cold drinks to weary and sore walkers. All of these (except for passing the hospital I was being treated at) were highlights.

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The captains at a pit stop.

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I had to get my photo taken with this lady at one of the pit stops.

 

 

 

 

 

 

 

 

 

 

My daughter happy to see me.

My daughter happy to see me.

And catching up with the G-town girls at a pit stop in a park.

And catching up with the G-town girls at a pit stop in a park.

 

 

 

 

 

 

 

 

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This family had set up their own pit stop out the front of their house. The support and encouragement was truly amazing!

Passing the MCG. Yep, that's a cousin still pushing me while I post some photos on Facebook. Not too taxing at all, this walk.

Passing the MCG. Yep, that’s a cousin still pushing me while I post some photos on Facebook. Not too taxing at all, this walk.

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‘The Good Tittie Team’ posing for an official photograph on the Princes Bridge, approaching Federation Square.

Outside Peter Mac.

Outside Peter Mac.

With my favourite brother and 'fave sis' outside Peter Mac.

With my favourite brother and ‘fave sis’ outside Peter Mac.

The captains outside Peter Mac.

The captains outside Peter Mac.

 

 

 

 

 

 

 

 

 

 

We mostly walked in small groups on the first day, caught up with each other at pit stops and then the composition of the groups would change. It was an opportunity to really catch up with people have a good chat. There was a lot of reminiscing and new friendships were made as not all the team members knew each other prior to the walk.

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Old friendships: Six members of ‘The Good Tittie Team’ who all went to high school together. There were also another five members in the team who went to the same high school but were in different year levels.

New friendships. Lee (primary school friend), Kristy and Naomi (Lisey's friends from Bendigo) and Lisa (a high school and very good friend).

New friendships: Lee (primary school friend), Kristy and Naomi (Lisey’s friends) and Lisa (a high school and very good friend).

It’s kind of funny going through these photos now. It looks like the only place I stood up was at pit stops! I promise, I did do some walking.

See, the wheelchair is empty! I must be in that group somewhere, walking.

See, the wheelchair is empty! I must be in that group somewhere, walking.

After many hours, the end of the first day approached. I think the last 3km went for 10km because for quite a while there, it seemed that no matter how far we walked, we still had 3km to go every time we asked! Finally we could see the end. Team members who had gone ahead waited near the finish line so we could cross together, as a team. We came in to a heroes reception with family members meeting us to cross the line with us and others forming a very loud cheer squad. Yes, that’s you President.

Crossing the finish line on day 1.

Crossing the finish line on day 1. Look, I’m walking!

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Still crossing the line.

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More titties crossing the line.

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And more titties.

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Aand that’s just about all of them.

 

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Best cheer squad ever! The President in the middle with her daughter, Karlene, on the right holding up that awesome banner she made! Papa Russ And Auntie Kaz from WA weren’t officially in the cheer squad as they walked, but they got back early and were there to cheer us over the line.

When we got back to ‘camp’ there were massages (not long enough), foot soaks, facials, dinner, limping, talking and even some dancing. Some people spent the night in tents at the campsite but the more sensible ones, like me, slept in a proper bed in a hotel room.

Tent city (photo credit to Lisey)

Tent city (photo credit to Lisey). You’d have to be nuts to sleep in one of those after walking 30km and facing another 30km the next day.

Foot soaks at camp. Even for those who hadn't walked too far.

Foot soaks at camp. Even for those who hadn’t walked too far.

And the wheelchair came in handy at camp too.

And the wheelchair came in handy at camp too.

 

 

 

 

 

 

 

 

 

 

I was keen to walk again (some of the way) on Sunday but I was mindful of my weary team who would probably find it painful enough just walking themselves without having to push me in the wheelchair too if I needed a rest. There was no shortage of volunteers to push me, but I have to say, some team members set a cracking pace (I’m looking at you Lisa N, and cousins Chris and Cheyne) to make sure they were nowhere that bloody wheelchair and couldn’t be roped into pushing. My daughter had had a big day and a late night, so I thought she could do with a sleep in too. I decided it would be fairest on everybody, including myself, if I just joined the team for the last few kilometres and crossed the finish line with them. So whilst the rest of the team set off at about 7 am, cousin Sonya, my daughter and I took our time, checked out of the hotel and met the team for lunch at one of the pit stops. Just before this pit stop, we were joined by one of our old high school teachers who most of us hadn’t seen for about 20 years! That was a beautiful surprise.

An old high school teacher joins two of her old students on the walk.

An old high school teacher joins two of her old students on the walk.

The team took off again and I got in the car with Sonya and my daughter. We met up with them again at a pit stop that was maybe 6km from the finish line.   I decided I would stay with the team from this point so the wheelchair came out of the car. I was feeling surprisingly good so when people kept insisting I have a rest, I just kept walking. Not wanting to let the wheelchair go to waste, others took the opportunity to have a rest.

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Fave sis having a rest.

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Daisy’s turn for a rest.

 

 

 

 

 

 

 

 

 

Which reminds me, we also lent the wheelchair to another walker, not from our team, who was struggling on the Saturday, and one of ‘The Good Tittie Team’ members (yep, a cousin) even pushed her. That wheelchair certainly came in handy.

Sunday was also a birthday for one of our team members. Unfortunately that occasion went by very under recognised as we were all a little bit pre-occupied with getting to that finish line. Thanks for giving up your birthday to walk with ‘The Good Tittie Team’ Waughbag.

Happy Birthday mole!

Happy Birthday mole!

There were a few casualties on day 2. Besides the blisters and sore muscles, there were lost toenails, a case of concussion from head butting a low hanging tree branch and a couple of knee injuries that meant one or two team members had to get on a bus and miss a lot of the walk. I won’t name them because I know they were disappointed that they couldn’t complete the entire walk.

Finally, a group of us arrived at the last pit stop. Those who had powered on ahead were waiting near the finish line so we could all cross together (they had been given strict instructions that we’d be crossing as a team), and those who were straggling behind were called and encouraged to get a move on so we didn’t miss the closing ceremony. At the last pit stop, which was about 4 km from the finish line, we were joined by a old primary school friend (who had gone to primary school with Lisey and I) who we probably hadn’t seen in about 25 years. There were five girls in our grade (in grades 5 and 6) at that primary school and we had four of them together at that moment.

We made our way along that hilly last 3 km, joined by kids and friends.

An old primary school friend joins us for the last 3 km.

An old primary school friend joins us for the last 4km.

And the kids make use of the wheelchair.

The kids make use of the wheelchair.

 

 

 

 

 

 

 

 

 

And the rest of the team sit and wait for us so we can cross the line together.

And the rest of the team sit and wait for us so we can cross the line together.

The WA uncles had already crossed the line. But they came back to cross it again.

The WA uncles had already crossed the line. But they came back to cross it again.

 

 

 

 

 

 

 

There were frantic texts from the cheer squad – “how far away are you? We’ve been waiting for hours!” Finally at about 2:30 pm, the sea of purple hats approached and finally crossed the finish line.

Here come 'The Good Tittie Team'.......at last!

Here come ‘The Good Tittie Team’…….at last!

And then we crossed!

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The captains leading ‘The Good Tittie Team’ over the finish line, joined by lots of supportive family members.

 

More of the family crossing the line; from left to right Uncle Max, cousin Cheyne, cousin Sonya's daughter (support crew), my mum, cousin Chris and Uncle Russ. Max and Russ had come all the way from Perth to be part of this team.

More of the family crossing the line; from left to right Uncle Max, cousin Cheyne, cousin Sonya’s daughter (support crew), my mum, cousin Chris and Uncle Russ. Max and Russ had come all the way from Perth to be part of this team. The birthday  girl is in the front right of this photo with her lovely kids crossing the line with her.

Someone very special also crossed the finish line with us, although I wasn’t aware of it at the time. One of our youngest team members, Daisy, who is Jenni’s (fave sis) niece by marriage, was walking for her Grandma and Jenni’s mother-in-law, Barb. We were all walking for Barb. Since it’s been a long time between blog posts, I may need to remind you that Barb was diagnosed with ovarian cancer around the time we signed up for the walk, so from the outset, she was one of the people we were walking for (since this walk was ‘The Weekend to End Women’s Cancers’). Daisy’s name on our T-shirts was Daisy ‘Walking for Grandma’ Johnson. Barb and her husband Len had donated money to our team. Sadly, Barb passed away just two weeks before the walk. Len met up with us both days, and walked some of the way with us. On day 2, he walked the last 4 km with us and just before we crossed the finish line, Daisy was given an urn containing Barb’s ashes to carry across the finish line with our team.

Daisy on the far right with her trusty GoPro in her left hand and Barb's ashes in her right hand. Next to her is her brother Charlie, then Len and Jenni with Jenni's son in the foreground and more of 'The Good Tittie Team' behind them.

Daisy on the far right with her trusty GoPro in her left hand and Barb’s ashes in her right hand. Next to her is her brother Charlie, then Len and Jenni with Jenni’s son in the foreground and more of ‘The Good Tittie Team’ behind them.

Len and Daisy.

Len and Daisy at camp.

So for a team that officially had 29 people walking on the day, we had at least double that crossing the finish line as we were joined by so many supportive and proud family members. Unfortunately we didn’t have enough ‘Good Tittie’ T-shirts for everyone. You can watch a video of us crossing the finish line here, compliments of Shane, our T-shirt designer (I hope it works!)

Once we crossed the line, there was lots of hugging, tears, fist pumping and posing for photos. The cheer squad had grown from day 1 as I think the President may have put word out that all family members must be present!

The proud captains of the awesome and amazing 'Good Tittie Team'.

The proud captains of the awesome and amazing ‘Good Tittie Team’.

The fave sis and I, and a bit of fist pumping.

The fave sis and I, and a bit of fist pumping.

 

 

 

 

 

 

With the fave sis and my fave daughter.

With the fave sis and my fave daughter.

The birthday girl with a sign made by her children. Thank goodness they made a bit of a fuss about her birthday!

The birthday girl with a sign made by her children. Thank goodness they made a bit of a fuss about her birthday!

 

 

 

 

 

 

 

 

 

 

Primary school friends; Lee, Lisey, Jen and myself.

Primary school friends; Lee, Lisey, Jen and myself.

The cousins. Thumbs up because they escaped the wheelchair on day 2.

The cousins. Thumbs up because they escaped the wheelchair on day 2.

 

 

 

 

 

 

 

 

Some of the cheer squad - Supportive uncles in the background, including Uncle Noof (the one who chose bowling over walking with his niece with cancer) and my dad in the gree

Some of the cheer squad – Supportive uncles in the background, including Uncle Noof (the one who chose bowling over walking with his niece with cancer) and my dad in the green top.

Unfortunately there wasn’t a lot of time for hugging, crying and photos with our cheer squad as the closing ceremony was about to get underway. Everyone who had walked was given a blue t-shirt to wear, except for the cancer survivors, who were given a pink T-shirt. Lisey, my sister-in-law (a breast cancer survivor in case you’ve forgotten) stood at the back of all the survivors and when we were asked to pair off and make our way to the stage, we rebelled and walked hand in hand as a group of three. We ended up coming to a stop right near the rest of ‘The Good Tittie Team’, still easily identified in their purple hats.

As we listened to speakers during the closing ceremony we noticed four survivors (in pink T-shirts) holding hands to form a circle and walking awkwardly towards the stage. I say awkwardly because they really could have done with another one or two people in that circle to make it bigger and easier for them to hold hands and walk. Yep, that was the survivors circle that Lisey was absolutely supposed to be a part of, and I should have been a part of. Oops!

You can see the awkward survivors circle up on the big screen.

You can see the awkward survivors circle, or maybe square, up on the big screen.

When the ceremony was over, we had one last team photo and then we all made our way home. Tired. Sore. Proud. Very, very proud.

'The Good Tittie Team' with a lot of our proud supporters.

‘The Good Tittie Team’ with a lot of our proud supporters.

As you’ve probably realised, if you’ve read this far, there were just so many highlights that weekend. I haven’t even described all of them! I left out the bit about cousin Sonya running over my daughter’s plates and being so upset I thought she must have run over my daughter! Perspective cuz, perspective. What started as a team of two (Jenni and I) called ‘The Good Team’ in about September 2013, quickly grew to 30. I don’t know what I was expecting when I started the team, but it wasn’t that. Lisey joined us and ‘The Good Tittie Team’ was born. There were eleven members of my family in the team including Uncle Max and Uncle Russ who had flown over from Perth to walk! Auntie Kaz from WA also walked with us on day 1 (and sensibly went shopping on day 2). There were primary school friends, high school friends, work colleagues/friends, three of whom had travelled from Geelong and there were friends who didn’t fit into any particular category other than being great friends! There were Lisey’s friends and my sister-in-law, Amanda’s cousin joined to walk with her too. We peaked at thirty, lost one to pregnancy, one to work commitments and one (cousin Sonya) to other duties. My brother, Mark, stepped in to replace one of the casualties and someone else joined us just days before the walk, so in the end we had 29 walkers/wheelchair pushers and a team of supporters just as big.

Thank you to each and every member of the amazing ‘Good Tittie Team’. Thank you to our amazing supporters. Thank you to our amazing uniform supplier and to Shane (our graphic designer) and to the printers who stressed us out. We had the best team uniforms without doubt! Thank you to every single person and company who donated to us. We were all blown away by the generosity of our donors. Thank you to my old high school and my daughter’s primary school who both held free dress days and raised over $1500 for us. Thank you to the team members who had garage sales and sold their belongings on eBay to ensure they raised $2000 and qualified to walk. Thank you to the team members who shared excess money they had raised amongst those who were struggling. That is team work.

We were part of something big that weekend. 1401 walkers raised $3.6 million for cancer research and we, ‘The Good Tittie Team’ contributed over $70,000!

Daisy had her GoPro there all weekend to capture the memories and she put together a short video which you can watch below. Just awesome!

Here is the proof of our trailblazer status.

And there it is. The word 'Tittie' on a plaque at Peter Mac. We did it!

And there it is. The word ‘Tittie’ on a plaque at Peter Mac. We did it!

So, a year later, as I finally got around to writing this post, I watched the video and looked at a lot of photos. I was reminded of what we achieved and how much fun it was. I contacted ‘The Good Tittie Team’ yesterday and said I thought it was time we got together again and did something good. Nearly everyone replied with “I’m in!” Rest assured, I’ll be chasing up those who haven’t replied! There might be more than one ‘good thing’ that we do, but at the moment we have our sights on a walk in Melbourne for Lymphoma Australia; ‘Legs Out for Lymphoma’ on August 22nd. Details haven’t been finalised yet but I can guarantee it will not be a 60km walk and it will only be a one day event.  So please, if you’re in Melbourne, keep 22nd August free to join ‘The Good Tittie Team’ and get all your friends on board. Being a walk for lymphoma, I’m thinking a team name change might be in order. ‘The Shitty Lymph Node Team’; that should raise as many eyebrows as ‘The Good Tittie Team’. But somehow I don’t think people will be yelling out “Show us your shitty lymph nodes” like they did with the good titties.

So there it is, a short 5000 word summary of a fantastic weekend. That was indeed a highlight of 2014. It was all pretty much downhill, sometimes very steeply, from there.

 

47. The real story

This is the real story; things I would have written in post number 45 if I was telling the truth, but I had to tone things down so as not to stress everybody out!

I suppose the first sign that things were not going to turn out as hoped was way back in September when I had the re-staging PET scan. You may recall that my haematologist said he expected that scan to be negative. It wasn’t negative. My haematologist was on holidays when I had that scan and the results were given to me by the caring, sympathetic, female haematologist who was covering for him. She told me the scan was almost negative and that it was a fantastic result. At the time I thought she was a bit overly positive and I was interested to know what my doctor thought about the results. I asked her if you could have a response like mine and then have progression of the disease at the end of treatment. I can still see the expression on her face. She looked at me as if to say ‘don’t be so pessimistic’ and her response was “Well yes, but it is very rare.”

When I next saw my haematologist, in his typical fashion of not letting much out, he said my PET scan results were “OK”. I left that appointment not knowing what he really thought so at my next appointment, I demanded answers. That is when he told me if that scan was negative he would have been super bolshy (confident) that all would be well at the end. Since it wasn’t negative, he was just bolshy as opposed to super bolshy. I was reassured by him but I did have some intermittent nagging thoughts that I wouldn’t be in remission at the end of chemo as I had read about people who had bulky disease (lymph node masses in their chests up to 20 cm across) who had negative PET scans after 4 rounds of chemo. I didn’t have bulky disease, yet my PET scan wasn’t negative.

I wasn’t troubled by these thoughts. I pushed on with treatment, counting down the chemo hits, counting down the number of crappy Wednesdays after chemo, hoping and planning for remission at the end.

As I approached round 12 of chemo, I just had a feeling that it wouldn’t be the end. I had no concrete evidence at that point, it was just a feeling. And that is very odd for me as I’m not the sort of person who has ‘feelings’ or makes predictions about things. If I had achieved remission, that feeling would have just been the normal doubts of a cancer patient. If I’d seen my haematologist before round 12, I would have told him that I just didn’t feel like it was the end. If me having a ‘feeling’ isn’t weird enough, this one is just outrageous. I actually felt like 6 months of chemo was too easy. Not that there was anything easy about chemo, I hated it, but for reasons I can’t explain, I just felt like it would be too easy to be rid of CANCER, that horrible disease that kills so many people, with just 6 months of chemo. Maybe that was because it did seem easy compared to what Lisey had been through; 10 months of treatment including three operations, chemotherapy and radiotherapy. I just had chemotherapy and one small operation. And I still had my boobs.

Now, in hindsight, I wonder if this feeling I had, that it wasn’t the end, is the reason I couldn’t be excited about the last hit of chemo; I said at the time I couldn’t be excited because I didn’t know if it really was the last one. I also played down any references to celebrating the end of the chemo. Several people wanted me to have a huge celebration for my birthday and the end of chemo, but I was hesitant and insisted it was just a mini celebration of my birthday and the fact I was guaranteed not to have any chemo in January.

There may have also been signs all the way through that I was misinterpreting. I had a couple of hospital admissions with fevers (which disappeared by the time I got to hospital). After those admissions, occasionally my temperature would go up a bit, but not high enough for me to call the hospital. I was focussed on neutropaenia and infection but maybe it was the proliferating (growing) lymphoma that was giving me these intermittent temperatures, because it can do that.

Being a doctor, I always had a look at the results of my blood tests before each round of chemo. I noticed my LDH and ESR were always a little bit elevated. I won’t bore you with the details of what these are; they are just two of the many tests that are done. I asked my haematologist about the LDH during one appointment and he said it was probably elevated due to cell breakdown (the chemotherapy killing cells) and it wasn’t concerning. I forgot to ask about the ESR.

I had felt a few lymph nodes in my neck but they didn’t seem to getting bigger, my haematologist wasn’t concerned about them and I wasn’t itchy.

Despite these feelings and possible signs that all was not well, I had no definite evidence that my cancer was still growing as I approached ‘the end’ of chemo and I chose to assume or hope that I would be in remission. I was happy for Lisey to throw streamers at me and blow party whistles as the last drop of chemo went in. I was happy for the chemo nurses to sing a song to me. I booked trips to New Zealand and Bali on the evening of my last chemo; I knew it was a bit risky, but I did it and convinced half of my family and a few friends to come to Bali with me. Hell, I had even signed up for a 60 km walk that I was telling everyone was 2 months after I finished chemo. Clearly at that point, I didn’t really think or know that I still had cancer.

That all changed a couple of weeks after finishing chemo. I can’t remember exactly when it was but I felt a very small lymph node on the right side of my neck. It was definitely new but it was seriously only about 1 mm  across. I wondered if that was the one the haematologist felt when he said “yeah that ones about 1 mm”. I kept an eye on that lymph node and over the next few days or weeks, I was pretty sure it was getting bigger. I was also having what felt like hot flushes and my temperature was going up a bit. I didn’t know if that was lymphoma or chemopause (chemotherapy induced menopause) but in combination with an enlarging lymph node it was somewhat  worrying.

I told a few people about my concerns, including Lisey. I didn’t tell anyone in my family as I knew that would completely stress them out and there was no point doing that because I could have been wrong. I wonder if the fact I told Lisey means I didn’t think she’d be stressed about the possibility of me still having cancer, or I didn’t care if she was stressed. I think I told her because I knew she understood cancerchondria, and I was hoping that was what I had. I probably also told a few people so that when the scan came back positive, I had proof that I really did think it would be positive and I wasn’t just being a smart arse saying “I knew that would happen”.

As the days went on and the PET scan approached, I was absolutely certain that lymph node in my neck was getting bigger so I was pretty sure the PET scan was going to be positive. I didn’t just tell my radiologist friend I was prepared for a positive result, I told him I was expecting a positive result.

So, on 28th January, I headed off for my third PET scan (and CT scan), the one that was supposed to tell me I was in remission. I had an early appointment so I was seen promptly. No need to bore you with the details because I’ve been through it all before and there was nothing special about the procedures. When I was having the CT scan, one of the radiographers said he recognised my name and asked if I worked locally. I said I didn’t but that I recognised his face. We worked out we went to the same high school.

After the CT scan, I texted my radiologist friend and told him I was all done and asked him how long it would take him to have a look. He must have called very soon after but for some reason my phone went straight to message bank. I listened to the message, just him asking me to call him but I could tell in his voice that the news was not good. Surely if it was negative he would have left a joyous message telling me so.

I had to wait to be given a copy of my CT scan films. Once I was given them, I got changed back into my clothes, went to the toilet and headed outside to my car to make the phone call. There was pain in my friends voice as he told me the scan was positive. I can’t remember the exact details and I don’t think he went into a lot of detail. It didn’t matter really, it wasn’t negative. I wasn’t in remission. I just remember him saying there was quite a bit of activity in my chest and some low down on the right side of my neck but nothing in my abdomen or anywhere else. He was very apologetic but it wasn’t his fault. He certainly did not enjoy delivering that news to me but I was very grateful he did. I wasn’t going to wait a week.

Although I was very prepared for that news and I was expecting it, it was still shit news and very unpleasant having it confirmed. I really had hoped I was the world’s biggest cancerchondriac. My immediate reaction was that I wanted to call my haematologist and change my appointment to that day so I could find out what was next. I spent the next hour or so sitting in my car sending texts and ignoring phone calls, although I did answer the phone to Lisey. I hope she feels special.

Word spread quite quickly. Jenni was gutted and promptly posted “FUCK YOU CANCER” on Facebook. That wasn’t just for me, by the way, it was also for her dear mother-in-law who was in hospital with advanced ovarian cancer. Cousin Sonya headed over to my house to be with my mum, and as she does, she brought food (lunch) and went through my fridge and pantry and made a meal with whatever ingredients she could find. She has earnt herself the nickname, Sonya ‘Ready Steady Cook’ Tomlinson, although she prefers to be known as Sonya ‘Fav Cuz’ Tomlinson.

As I drove away from the radiology place, I realised I’d left my CT scans in the toilet so I stopped and called them and yes, they found them in the toilet. They told me to come back later to get them as they were waiting for the PET scan films to be printed.

When I arrived home, Sonya and my mum greeted me in the garage as I drove in, and they shut the roller door of the garage. Then they just stood there and watched me as I gathered my things. I’m still not sure what that was all about. Perhaps Sonya will explain.

I went inside and got my daughter alone so I could tell her the results of my scan. I had told her that I was having a “big X-ray” that day which would hopefully show that all the cancer was gone. When I told her the results, her response was “I know”. To which my response, in my head, was “WTF??” My mum and Sonya hadn’t told her the results. I didn’t think she was psychic but it was just a bit weird! Then she said, “I knew that you didn’t have cancer anymore”. She had misheard me. I explained that I did still have cancer. She had a bit of a confused look on her face and said “I don’t want you to have cancer anymore”, and then she moved on to something else and was laughing. And that was it. Much like the very first time I told her I had cancer. It’s good that she’s too young to fully comprehend it.

As the day went on, I decided I wasn’t going to change my appointment with the haematologist. I knew that whatever was next for me, which I thought was most likely a stem cell transplant based on a previous discussion I’d had with my haematologist, was not going to be pleasant, so I really was in no hurry to find out. I also figured that this bastard had been happily growing away through chemotherapy for the last few months, so another week wasn’t going to make any difference.

I forgot to take my daughter to her swimming lesson that afternoon too. I guess I had other things on my mind.

I must say, one thing that I was quite pleased about, was that pretty much everyone told me that it was just plain shit that my PET scan wasn’t negative. Nobody tried to find a positive, except me (jokingly) and that was good. Clearly you’ve all been paying attention and my blog has served its purpose! Also, before the PET scan, nobody told me that they “just knew” it was going to be negative, which is good, because I find that quite annoying. Nobody knows what the result is going to be and you look a bit silly when it’s not negative and you apparently just knew it would be. I knew everybody was hoping and probably expecting it to be negative, but sadly it wasn’t.

I didn’t wallow in self pity over the next week, I just felt really pissed off. Pissed off I’d had six months of shitty chemo for no apparent reason other than to endure the side effects. Pissed off that Jenni had wasted so much time coming to nearly all of my chemo sessions with me. Pissed off that my mum had done so much to help me through treatment that didn’t work. Pissed off that I wasn’t going to be able to repay all the school mums for the help they’d given me and I’d be asking them for even more help this  year (I know they don’t for one second expect me to repay them, but I’d like to). Pissed off the re-staging PET scan was almost negative giving us all the impression the chemo was working.  It would have been better if that scan showed no response so we could have moved onto a different treatment that may have worked, rather than push on with 8 more rounds of the stuff. I could go on with my reasons for being pissed off but even I’m getting bored.

So, what to do now? I think this is all I can do to get through the next stage of my adventure.

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41. Chemotherapy – round 8…..ho hum

Monday 4th November to Sunday 17th November

It’s all getting a bit boring really. A bit of chemo, a few days in bed. Nothing particularly interesting happened this fortnight…or maybe it did and I just can’t remember it. The chemo brain is quite bad now.

Chemo number 8 took place on the day before Melbourne Cup Day. Like many people, my haematologist had a day off so there was no pre-chemo appointment with him and no hard questions to be asked.

Jenni had to work that day so Joanne stepped in as my chemo buddy. She is definitely putting in the hard yards for that favourite sister status. The results of my blood test took ages to come through so there was quite a delay before chemo actually started. My neutrophil count was fine thanks to the G-CSF injection so there was no need to consult with any doctors before hooking me up. Once it started, it was pleasantly eventful. I was informed that renovations would be commencing in the chemo ward in a couple of weeks and go through until just before xmas. The area was quite cramped so anything that would give the staff more room to move without trolleys crashing would be good. If they finished the renovations on time, I would have the pleasure of receiving my last chemotherapy infusion in the newly refurbished ward.

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My chemo buddy for the day. I’m getting quite good at these selfies.

I started feeling tired while I was having chemotherapy and I may have even had a little nap. When I got home, I pretty much went straight to bed and again spent the next three days in bed. The chemo definitely seemed to be hitting me harder in terms of the fatigue but I had been told to expect that.

Apart from exhaustion and the feeling that I really couldn’t be bothered doing anything (which is probably exhaustion), there were no other significant ill effects. I didn’t have bone pain from the G-CSF this time which was good. The nausea seemed to be lasting a bit longer each time so I was popping the anti-emetic tablets more frequently. There was no vomiting; that pleasure was bestowed upon my daughter this time.

She came into my bed on Tuesday night and said she had a sore tummy. Shortly after she said she was going to be sick so I ran to get a bucket, hoping she’d hold it in until I got back. She didn’t hold it in but she got out of bed and took herself to the bathroom and vomited in the sink. I was so proud of her! I really expected vomit all over the bed. Perhaps I should have taken her to the bathroom myself and not worried about the bucket, but as I said, the brain isn’t working too well now. My mum was there and offered to take my daughter in to bed with her so I didn’t get sick too. I wasn’t trying to be a hero but I figured that I was going to feel like crap the next day anyway and I needed my mum healthy to look after the 20 month old ball of energy. If she got sick, I’d have to call in more back up. So I took my chances.

The vomiting continued all night, pretty much on the hour. Nine times in total but who was counting? At 7am I did a quick google search on zofran wafers and found out it’s OK to give them to kids, so I popped one on her tongue and there was no further vomiting. Wish I’d thought of that earlier! Zofran is a strong anti-emetic (anti-vomit) drug commonly used to treat nausea and vomiting after chemotherapy. The beauty of the wafers is that they just dissolve on your tongue so they work quickly and are perfect for kids. I am also happy to report that with frequent hand washing and extreme care, I actually managed to avoid getting gastro myself. Very surprised but very relieved.

I came out of the exhausted phase by Friday, and by that I mean I made it from the bed to the couch. The ‘good’ week was spent madly blogging, fundraising and recruiting new members to ‘The Good Tittie Team’. Jenni and I had a meeting with our uniform supplier to discuss what options were available. It was a long but productive meeting. Girls discussing colours is never going to be quick.

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The team uniform meeting. Yes, another selfie!

Since there is not much else to talk about, I will give you a quick update on the current status of ‘The Good Tittie Team’. The team was formed 6 weeks ago and started with two members. We now have 29 members and have raised almost $32,000. Eight members have raised over $2000 and have therefore officially qualified to walk. That leaves 21 members who are yet to qualify and it’s definitely not too late to donate!

Our fundraising efforts saw us race up to third top fundraising team, but we have now slipped down to fifth. We have three members in the top 100 fundraisers too. I did get up to 8th at one point but have now slipped out of the top 10, to 11th.

Our newest recruit is Bonnie. She has now taken the title of the youngest member of our team and will only be eligible to walk (by age) a couple of weeks before the event. Bonnie is my niece and daughter of Amanda (also on the team and a breast cancer arse kicker). She was my flower girl, shares the same middle name as my daughter and is a real sweetheart – being born on Valentine’s Day, she doesn’t have much choice. She has already kicked off her fundraising efforts with a massive $500 donation! Welcome to the team Bonnie!

If you would like to donate to ‘The Good Tittie Team’, simply click here.  This will take you to our team page.  Simply scroll down to see the members of the team and click on whoever you would like to donate to, preferably somebody who hasn’t reached $2000 yet (or me).  When you are on the page for that person, click on the big green ‘DONATE ONLINE NOW’ button.  It’s that easy.  If you’d like to make it a bit more difficult, go to http://www.endcancer.org.au and then you can search for our team (The Good Tittie Team, in case you’ve forgotten) or search for an individual by name. Any person or organisation donating $500 or more will be rewarded with their name on our team T-shirts. We are the second biggest team in the walk so we will stand out. Pretty good advertising.

This is also a final shout out to anyone who would like to join ‘The Good Tittie Team’ for something that is going to be so much more than raising money for a good cause. It is going to be a huge reunion of family and friends showing their support for two girls who had a pretty shitty 2013. Above all, it will be fun.  We will be ordering uniforms very soon so we need to finalise team numbers. If you would like to join, click on that ‘here’ button above, scroll down and click on ‘Join Team’. Let me know if you’re joining and I’ll give you the password. Go on, do it!

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40. Chemotherapy – round 7……and an ode to Ev

Monday 21st October to Sunday 3rd November, 2013

I turned up to my routine pre-chemo appointment with my haematologist with a bit of attitude this time. I walked in, sat down in the chair and said “I need answers. I need to know what the future holds for me.” I left the last appointment with him a fortnight earlier really having no idea if he thought my PET scan results were good, or if he actually thought they were bad because I didn’t have bulky disease and the scan wasn’t negative.

I think he was a little surprised by my assertiveness. He turned and faced me and looked me in the eye. I asked him a lot of questions about whether he thought the PET scan at the end of treatment would be negative, what would happen if it wasn’t, what my chance of relapse was and what sort of treatment would be involved if I relapsed.

He said if the PET scan after 4 rounds of chemo had been completely negative he would be “super bolshy” (I think that means arrogantly confident or something like that) about the PET scan at the end being negative. Since that PET scan wasn’t negative, he said he was “bolshy” rather than “super bolshy” about a negative PET scan at the end. If the PET scan is not negative, I will probably have radiotherapy to any spots still showing activity, as long as they are not widespread.

If the PET scan at the end is negative, does that mean I am cured? He said he hoped so, but of course there are no guarantees.  I will continue to see him every three months initially to see how I’m travelling. I had asked him at one of the very first appointments about how we would know if I relapsed. I assumed I’d be having fairly regular PET scans but he told that wouldn’t be the case. Apparently they do that in America, but not here. Obviously it comes down to money. If I relapse with lymph nodes involved in my neck, armpits or groin, I can feel them, but if it’s in my chest or abdomen, I can’t feel those lymph nodes, so the lymphoma could just march along with me completely unaware….unless I get itchy again. I didn’t really go into it too much at this appointment, but diagnosing a relapse is definitely something I’ll go into in great detail if I am given the all clear after the next PET scan.

If I am given the all clear, there is about a 10% chance of relapse in the first two years. After two years, the risk of developing other cancers is actually higher than having a relapse of lymphoma. The risk of other cancers is higher than the general population because of the chemotherapy I have received! Good chemo for the good cancer. It might cure the lymphoma but then give you another cancer. Awesome! If I do relapse, the treatment is likely to be a stem cell transplant. He was a bit hesitant to go into too much detail or commit to what sort of treatment I would have, as any treatment for a relapse is likely to be performed in Melbourne under the care of a different doctor.

I left the appointment feeling a little clearer about his thoughts on my prognosis. He doesn’t have a crystal ball so I guess I couldn’t ask too much. It seemed to me that a negative PET scan at the end of treatment was the most likely outcome but the possibility of a relapse and how that might be detected was a concern.

I went downstairs to be hooked up to chemo and was back in the naughty corner again. Getting number 7 under my belt was a bit of a milestone as it would mark the first time I had less chemo ahead of me than behind me. The nurses informed me that my neutrophils were 0.6. I was neutropaenic again having not G-CSF after the previous round of chemo. I wasn’t even the slightest bit concerned that I wouldn’t be having chemotherapy that day but the nurses told me they’d have to run the results past my haematologist to make sure he was happy to proceed. I was OK with that. They were just following protocol.

Of course, my haematologist was happy to proceed but he also told the nurses that I would now be having G-CSF after every round of chemotherapy. I guess I had earned it now, being persistently neutropaenic. My lazy bone marrow hadn’t realised that it needed to work a bit harder so it would be getting some help. My chemotherapy infusion was otherwise very uneventful. Given my episode of vomiting after the last round, which I forgot to mention to the haematologist, I made sure I was sent home with some extra anti-emetic drugs.

The fortnight after chemotherapy was fairly uneventful too in terms of the effects on me. I spent Tuesday, Wednesday and Thursday in bed feeling completely drained, but there was no vomiting which was very fortunate. I hadn’t spent three days in bed after previous rounds of chemo. I had been told the tiredness would be cumulative and it felt like that was exactly the case.

It was in this fortnight that I started the dodgy hodgy chemo cuts reveal challenge and formed ‘The Good Team’, which was soon after re-named ‘The Good Tittie Team’. So it was quite fortunate there were no particularly nasty after effects as I was very busy fundraising and blogging.

I had to go back to the hospital on Monday 28th October for a routine flush and change of dressing on my PICC line. I was fortunate to have an earlier than usual appointment that day which meant I could get out in time to pick up my daughter and her friend from school and take them to gymnastics. This has always been left to the parents of my daughter’s friend, which they have been very happy to do and for which I am extremely grateful. They also usually take my daughter back to their place for tea and then deliver her home, fed and happy. Thank you Tash and Richard! The support from the school community really has been amazing. Although taking my daughter and her friend to gymnastics is really no great feat, it is important to me that I do simple things like that in the ‘good’ weeks as I know my daughter hates the ‘bad weeks’ when I spend a lot of time in bed and everyone else runs her around to school and other activities.

On that Monday, I developed quite severe bone pain, due to the good old G-CSF. It was a strange, throbbing pain around my hips and sacrum. It was constant but made much worse with any change in posture or position, like moving from standing to sitting or vice versa. I also had a band of throbbing pain around my chest when I moved. It was quite a bizarre kind of pain but fortunately it settled considerably after that day. I didn’t take anything for it. As I later told a nurse, I just sucked it up.

This fortnight was also the first time I was asked what once would have been a very confronting question by a complete stranger. I was in Adairs, doing a spot of Christmas shopping (taking advantage of the good week and getting organised early) when a man who looked like he was in his 70’s came up to me and said “Excuse me, have you got cancer?” I thought it was really quite odd to ask that question to a stranger and I did wonder about the state of his frontal lobe (for the non-doctors reading, people with frontal lobe problems are disinhibited and often socially inappropriate) but I wasn’t upset or offended. I actually thought it was pretty funny that he’d just blurted it out so I smiled and said, “yes, I have cancer”. He then told me that his wife had died of cancer about a year ago. I think my behaviour then was even more inappropriate than his! As I was in full-on fundraising mode, I thought “Hmmmm, I could get a donation out of this”. I asked him what sort of cancer his wife had and he said “ovarian”. Bingo! A women’s cancer. So, I told him about the walk to end women’s cancers that I had signed up for but he just said “Oh, good luck with everything” and walked off.

I mentioned in the previous post that my hair loss had not been quite as advanced as I had expected it to be. I think every chemotherapy regime is different and every person is different in their response to it. My hair had thinned considerably, so there was no question it had to be shaved off,  but I had very thick hair to start with so I was far from completely bald. The hair that was there was even starting to grow so I really was starting to look quite a sight with very thin hair exposing much of my scalp. I thought I was looking like a balding old man. In fact, I thought this hair style was quite similar to that of my good friend Ev! I promised Ev that if he joined ‘The Good Tittie Team’ or made a sizeable donation, I would dedicate a blog post to him. Everyone loves a blog mention! Unfortunately he couldn’t join the team due to work commitments (whatever!) but he did make very generous donations to both Lisey and myself. So Ev, this is your time to shine……sort of, because it won’t all be nice.

I’ve already mentioned Ev a few times throughout this blog. He is a high school friend and one of the very few high school friends I have kept in contact with in the now 21 years since we finished. Ev was a cycling fanatic in high school; he still is but age has slowed him down a bit. He used to call cycling hammering, so I bought him a hammer, and got it engraved, for his 21st birthday. I wonder if he still has it. As we got older and our lives got busier, the face to face catch ups became less frequent but there were still fairly regular phone calls and text messages between us.

After I was diagnosed with cancer, Ev stepped it up and really has been a tremendous friend and support to me. When you’re diagnosed with cancer, you really find out who your true friends are and Ev is definitely one of them. There have been many text messages and phone calls, a good percentage of which haven’t been responded to but he hasn’t given up on me! He has visited me several times, once straight after finishing night shift and he even brought dinner! He did confess however, that his beautiful wife prepared that meal, not him. That visit was the day before my PET scan so that Shepherd’s Pie became the celebratory meal when the results were good. We went out for brunch that day and I remember the day well as I talked like a woman possessed and I don’t think poor Ev got a word in, but he sat patiently and listened.

Sadly Ev’s father passed away very recently. Fortunately for me, the funeral was in my good week, so I was able to attend. There were at least seven people, and a few partners, from high school at that funeral, which I think says a lot about Ev. I told him that to have that many high school friends there, so long after finishing high school, really is testament to the great guy that he is. I’d say Ev’s wife is lucky to have him but I actually think he’s luckier to have her!

Sorry Ev, but it can’t all be nice. With any glowing reference there needs to be a bit of a slap in the face too. When I told Ev I thought my current hairstyle was resembling his, I asked him to send me a photo of himself so I could put it next to mine on this blog. To my great surprise, he did send me the requested photos with the accompanying text “Very uncomfortable doing this. It’s just for u and that fucker cancer”. I was also very surprised to learn that these were not Ev’s first ever selfies. So here is Ev and myself sporting our very similar hairstyles.

The front on view……..

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And the more telling, top of the head view……..

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Fairly similar I think (although Ev carries it off much better), so I have dubbed that hairstyle of mine ‘The Ev’ as a tribute to my good friend. After taking that photo, I shaved all my hair off again as it really was looking very average. Quite vain of me!

So that was the end of the fortnight after chemo round 7. Seven down, five to go wasn’t sounding too bad.

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39. Chemotherapy – round 6……the half way mark

Monday October 6th, 2013

I’d only been discharged from hospital the day before and I was back there again for another hit of chemotherapy. I hadn’t seen my haematologist since 26th August as he’d been on holidays. I was looking forward to seeing him so I could ask him what his opinion of the PET scan result was. I was fairly certain it wouldn’t be as overwhelmingly positive as his sympathetic female colleague. Jenni came into the appointment with me. She likes to sit in on them when she can as she finds my haematologist’s lack of sympathy quite entertaining.

I filled him in on what had happened over the last month or so, including the insertion of a PICC line and the recent hospital admissions. I told him I was feeling stupid turning up to hospital and not having a fever and asked him if I should bother coming to hospital if it happened again. His advice was to take some panadol and see if the temperature settled. Quite funny really, as my standard advice when people complain to me about any sort of illness is “take a couple of panadol and have a lie down.” I told him I had really felt quite unwell when I was admitted the second time and that I was surprised I didn’t have a fever in hospital. He said there was nothing sinister on my blood tests.

I then told him about the night sweats and I’m pretty sure that made his ears prick.  Hmmm, could that be B symptoms? (In case you’ve forgotten, B symptoms are fevers, night sweats and weight loss in people with lymphoma, and are associated with a slightly worse prognosis). Surely not so soon after a nearly negative PET scan, and I didn’t have B symptoms when I was diagnosed. It was enough for him to get me on the bed and examine me. He felt my neck and abdomen and listened to my chest and reported that everything looked pretty good to him. That was comforting.

I asked him if he’d seen the results of the PET scan and he said he had. I asked him if he thought the results were good and he said “they’re OK”. I then said “you said you expected it to be negative and it wasn’t. What does that mean?” His response was “it’s not worth splitting hairs at this stage”. That was not so comforting. I didn’t really know what he meant by that but for some reason I couldn’t be bothered going in to it.

I asked him if I would be having G-CSF after this round of chemotherapy and he said “No”. I asked him why not, not that I wanted it, I was just interested in his reasoning. He said there was no point stirring up the bone marrow. I wasn’t really sure what the meant but figured I just had to be severely neutropaenic to ‘earn’ the G-CSF, and since I’d had it after the 5th round of chemo, I wasn’t neutropaenic going into this 6th round.

I also asked him if I was actually going to lose all my hair. I was now over 2 months into chemo and although my hair had thinned considerably, I was far from bald, and some of my hair was actually growing. I took my scarf off and showed him how much hair I had. He asked if he’d told me I’d lose my hair and I reminded him that he definitely had. It was pretty much the only side effect of chemotherapy he had been certain about. No mention of nausea or extreme fatigue.  Oh, he did also mention the cessation of periods. He conceded that I probably wouldn’t lose all of my hair.

I wasn’t annoyed that I’d shaved my hair, because I had to do that with the amount that was falling out. As strange as it might sound, I was actually a bit disappointed that I wasn’t going to go completely bald. It’s not something many get the opportunity to experience, not that everyone would want to, but if you’re going to lose most of your hair, you might as well lose it all! Also, a lot of people who have lost their hair due to chemotherapy find that it grows back completely differently, like my sister-in-law, whose hair grew back completely straight (I was going to say dead straight but that could be inappropriate). So, I was interested to see how my hair would grow back and I didn’t know if the fact that it hadn’t completely fallen out meant it would just grow back the same. I was hoping for completely straight regrowth but actually thought I might just get another twist of the knife with it growing back grey.

After the appointment with the haematologist, I headed downstairs for chemo number 6. The half way mark. Quite a milestone. Although I didn’t really feel that I would be half way until I got through the effects of chemo, it certainly was a good feeling to be able to start counting down the remaining sessions. I didn’t feel I could do that when I had more ahead of me than behind me.

There was nothing particularly remarkable about session number 6, which is good. No threats of delayed chemo, most importantly. Karine wasn’t there as she’d had her last session a fortnight earlier, and Jenni and I didn’t find a new friend that day.

The after effects of round 6 were fairly kind initially. Wednesday was the worst day, as it usually is, but as far as Wednesday’s go it was pretty good. I dragged myself out of bed before 5 pm and even managed to take my daughter to and from her singing/dancing/acting class, something I usually leave to my mum. I had  lovely dinner, cooked by somebody else and went to bed early looking forward to a good nights sleep and the possibility of feeling relatively normal the next day. Unfortunately, that was not to be. I woke up at 4 am and started vomiting! Now I know that nausea and vomiting are pretty standard side effects of chemotherapy, but this hadn’t happened with the previous five sessions, so why was it happening now? Just when it looked like I was going to get off lightly with the after effects!

I didn’t know if the vomiting was due to the chemotherapy or I had just been ‘lucky’ and had a bout of gastro. It didn’t matter really. What I was hoping would be a good Thursday was a day spent in bed feeling completely and utterly drained. Nausea and vomiting is not pleasant at the best of times, but I think when you’ve had chemotherapy and you have virtually no reserve, it hits you even harder.

I think the fortnight after chemo number six was one of the hardest. Perhaps it was cancer’s way of saying “don’t be too excited about being half way through your treatment!”  I was completely physically and emotionally exhausted and my catchphrase became “drained is the new normal”. I was feeling guilty about not being able to do things with my 6 year old daughter and because I felt crap, I had no patience and felt like I was constantly yelling at her and telling her off. I felt like she was suffering too and that was not fair. Although having a 20 month old son is bloody hard work when you’re going through chemotherapy (and even when you’re not), the blessing is that they are (hopefully) too young to remember anything. I do feel guilty about neglecting him too, and I’m sure he thinks my mum is him mum at the moment, but he is happy and I’ll make up lost ground in 2014.

Sally (high school friend, member of ‘The Good Tittie Team’) came over on the Saturday to entertain my children, to give both my mum and I a break. The girl is a star and I can not thank her enough! She cleaned up the playroom, brought dinner and entertained a very busy, young boy. By the time she left in the afternoon, I thought I was starting to feel better but then I performed the rather simple tasks of feeding and bathing my son, and I was exhausted. It really was quite frustrating. Cousin Sonya came for a sleep over that night, to catch up and to let me sleep in on Sunday. My darling cousin has been so supportive during this adventure.

I also discovered a new talent in this fortnight. That of making people cry. Well, it’s actually not a new talent if I think about it. From what I have heard, there have been a few tears shed by people reading this blog but I think that was mostly at the start so perhaps I was rediscovering this talent. I took my daughter to swimming on Saturday morning, and a good and honest friend told me I looked like crap. I told her about what had been happening and my physical and emotional exhaustion and I started crying. Then she started crying. On Sunday something else set me off and there were tears again. Sonya also started crying and then Jenni, who had popped in for a cup of tea, started crying too. The three of us were standing in the kitchen crying, so then I started laughing and wanted to take a photo of us all crying.

At the end of an exhausting fortnight, I was feeling like I needed to book some sort of holiday (local of course, because I wasn’t allowed to go overseas). I needed something to look forward to. The problem was, this cancer and the effects of treatment were so unpredictable. I could book something and may not be able to go because I might be in hospital with a non-existent fever, or I could just be so drained that it when it came time to go, I couldn’t be bothered. There just didn’t seem much point.

The fortnight ended on a nice note with my daughter writing a short but beautiful message for me. I felt I’d been so short tempered with her and was neglecting her, but I guess it just proves that a mother’s and daughter’s love is unconditional. Six down, six to go!

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36. Chemotherapy – round 5

Monday 23rd September, 2013

It was the school holidays and Jenni (fav sis) wasn’t able to accompany me to chemo that day. She usually works on Tuesdays but had to work on Monday instead that week. My friend Simone knew someone who had Hodgkin’s lymphoma about 10 years ago and she had told Simone that she wished she’d taken different people to chemo with her, rather than the same person every time, so more people could see what it’s actually like to be given chemotherapy. (I actually thought it might be nice to take a different person to chemo each time so they could have the chemotherapy instead of me! But my PET scan results probably wouldn’t have been so good if I did that).

Simone was the first person I thought of when Jenni wasn’t able to be my chemo friend that day and after confirming her mum could look after her two children for the day, she accepted the job. Poor Simone definitely drew the short straw, however. It was a long day!

I met Simone about 15 years ago, maybe more, when we worked together at the good old Grand Hotel. We travelled overseas together for a few months in late 1999/early 2000 and got up to a bit of mischief. We spent New Year’s Eve on the streets of Edinburgh at “Hogmanay” which is one of the biggest New Year’s Eve events in the world and was a pretty awesome place to welcome the new millennium. We actually had more fun the next night at a little pub, chatting to some locals wearing kilts. And we found the answer to that question everyone asks – ‘do they wear underwear under their kilts?’ No, they don’t! Well at least the one we were talking to didn’t. I think I took a photo to prove it. Simone is a very caring, generous, sympathetic and empathetic person and has been a friend I have been very fortunate to have during this adventure. She put together a cancer show bag before I started chemotherapy, made me a bracelet with a ‘tree of life’ charm on it, has been to my house to cook me dinner (and drink wine), delivered many meals, and called/texted often. She was also the first one to start investigating hats and scarves.

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The bracelet Simone made for me.

Simone sells bracelets too by the way, so if you want to order one, let me know. And you can still order those stickers from http://www.myracecarsticker.com.au I am determined to get some orders for something!! I think I’m going to go for an FUC sticker, a little more subtle than F##K CANCER.

Back to the chemotherapy. Simone picked me up from home and we drove into the hospital. First stop was the chemo ward to have a blood test to see how those neutrophils were holding up. There was no visit to the haematologist prior to chemotherapy this time as my usual haematologist was still on holidays and I had seen the covering haematologist on Thursday for the results of that PET scan. Simone had been instructed by Jenni to make sure a hot lunch was ordered for me and she completed that task with stealthy efficiency.

That day was a very special day as it was Karine’s (my chemo buddy) last chemotherapy. I was definitely jealous, but very happy for her. I wasn’t seated next to Karine and that was not going to be acceptable for her last session.

That day was also the day I had a PICC line inserted so after the blood test, the next stop was the radiology department next door. I have mentioned in a previous post that PICC stands for Peripherally Inserted Central Catheter so it is basically a catheter that is inserted into a peripheral  blood vessel (i.e. a blood vessel in a limb) and fed up to a central vessel (i.e. a large vessel near the heart). The advantage of a PICC line is that it can be left in for several months. It can be used to deliver things (i.e. chemotherapy) and also to take blood for blood tests, therefore preventing the need for multiple stabs. Also, the delivery of chemotherapy to a large, central vein would save my poor peripheral veins from further trauma and sclerosis.

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This illustrates where a PICC line is inserted and the tip in a large vessel near the heart.

I first met the nurse who would be assisting the radiologist who would be inserting the PICC line. She was lovely. Simone told her I was doing a blog and I wanted some photos of the PICC line going in but she was a little uneasy about that. I also thought it probably wasn’t wise to have someone photographing the procedure. We didn’t want to make him nervous and have him pierce a big central vessel or my heart! So we settled for a few photos of me lying on the table ready for the PICC line to go in. The nurse asked me which arm I’d like it in and I chose my left arm since that was the arm that already had all the stuffed veins. Might as well keep the right arm good.

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Ready for the PICC line.

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The radiologist came in and introduced himself. Also lovely. He was the husband of a work colleague so we chatted about my work and also about my radiologist friend, who I assume had lined him up to perform this procedure. He explained what the procedure would involve; injection of local anaesthetic which would be the worst part, a small incision, insertion of the catheter, threading it up to a large vessel near the heart and confirming its position radiographically. The local anaesthetic was inserted and all of a sudden I felt a hand rubbing my right shoulder. It was the nurse. Although it wasn’t really necessary, I did think it was such a nice thing to do. The local anaesthetic did sting but it was nothing compared to a bone marrow biopsy!

The radiologist made the incision and inserted the catheter. He made a comment about me having royal blood because it was very blue. Perhaps I really am a princess! The catheter was threaded up the vein and the correct position of the tip was confirmed. A dressing was applied and that was it. It was all over with pretty quickly.

I returned to the chemo ward ready for the chemo to be delivered through my new PICC line. I was happy to find that I had been moved and was now next to Karine, so we could chat all day during her last chemo session.

My blood test results were back and I was informed that my neutrophils were 0.3. Wow! That was an all time low. Still, I wasn’t concerned because I was ‘well’ so I would be having my chemotherapy. The nurse who was looking after me said she’d have to check with the haematologist before hooking me up to chemo. I understood that but I was a little nervous as my haematologist was still on leave. I knew he would not bat an eyelid and tell them to give me the chemo but the woman who was covering him (you know the one who looked me in the eye and asked “how are you?” and who was so very positive about my PET scan results) was nice! I was just hoping she was only nice to people and not to cancer and would tell the nurses to give me my chemotherapy!

The head nurse came over and told me I wouldn’t be having chemotherapy with neutrophils of 0.3. I told her I’d had chemo with neutrophils of 0.5 and 0.3 wasn’t that much lower than 0.5. She said 0.3 was very low and my chemo would be delayed for a week at that level. No chance! I had the rest of the year mapped out in terms of bad weeks (chemo weeks) and good weeks (non-chemo weeks) so throwing that out by a week would mean I would be having chemotherapy on the Monday before xmas and xmas day, being a Wednesday, would be a write off. It would also mean that the treatment for this cancer would extend into 2014. That was not going to happen. 2014 was going to be a good year.

The nurse who was looking after me came back and told me they were still waiting for the covering haematologist to call back. I was happy to wait. About 10 minutes later, the nurse said the haematologist hadn’t called back so they had spoken to another doctor who sometimes covers my doctor when he he’s away, and he said I should have an injection of neulasta (a drug that makes the bone marrow produce more neutrophils) and come back on Wednesday for another blood test to see if my neutrophil level had improved. I wasn’t happy with that so I told the nurse I wanted to wait for the female haematologist to call back to see what she said.

My haematologist would be back at work the next morning at 8 am so I had already decided I would be calling him at 8:01 am to get him to instruct the nurses to give me chemotherapy on Tuesday if it wasn’t going ahead today. Fortunately the female haematologist called back and told the nurses to give me chemotherapy. She also explained to them the importance of not having delays in chemotherapy in the treatment of Hodgkin’s lymphoma. I would also be earning an injection of bone pain causing Neulasta this time. The nurses apologised but I was not angry with them. I understood their concern about giving me chemotherapy with such a low neutrophil count, but I also knew I should be having chemotherapy that day.

When re-telling this story to an old colleague recently, we laughed that I was possibly becoming a drug addict. Nothing was getting in the way of me having my drugs that day. It’s a little odd, because these drugs make me feel like crap and I wish I didn’t have to have them but I do not want to prolong this adventure by a single day.

So, I was hooked up to chemo through my new PICC line and despite a very late start, it all went smoothly.  Jenni came to visit on her way to work to wish Karine well on her last chemotherapy, (and to check that Simone had ordered my hot lunch). I am so glad I met Karine, although in a way I wish I’d never met her as both of us having cancer is the reason we met. The chemotherapy sessions were almost fun with Karine there. She was a breath of fresh air and made Jenni and myself laugh often with her honesty and sense of humour. We met her mum, her friends and her husband, as she had a different ‘chemo friend’ each time, and we learnt a lot about her through the stories she told us. Karine is also participating in the weekend to end women’s cancers but unfortunately she is not a member of ‘The Good Tittie Team’. I guess we’re all on the same team really, raising money for the same cause.  I wish Karine all the very best in her life after cancer. It won’t be the same but she’s a strong, happy person and she will be fine. We’re Facebook friends now and I think we can call ourselves real friends too. I am sure we will keep in touch.

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Karine and I in our gold class chairs, in the naughty corner, hooked up to chemo, for the very last time for Karine.

Simone and I didn’t leave until nearly 5 pm which is the latest finish I have had. It was a long day but it was another chemo down. Seven to go.