My Unplanned Sabbatical

“You kicked its butt dad, you did it”

In quiet moments I have dared to dream that one day this year I would write a post like this. Not often as I was always mindful not to get ahead of myself or the process I was working through.

Yesterday Petra and I unexpectedly received the news that my scans confirmed that I am now “cancer free” and in “complete remission”!! In the words of my oncologist my scan results are “fanbloodytastic”!! I will take that as very good.

My oncologist was scheduled to talk us through the scan results this Friday but when I was sitting in the big blue chair I was summoned to her chambers unexpectedly. I have learned that the hospital system can deliver both bad and good news in a similar fashion. That is news can be delivered bluntly, quickly and with little time for reflection. That is how this great news was delivered yesterday around 10.00am.

Initially the nurses in the cancer day unit would not let me leave as I was all hooked up to my new black bag. I soon realised that the oncologist pulled rank and I was begrudgingly allowed to leave, together with my IV pole to stroll to the day clinic in another part of the hospital. I then sat to join the many others in the waiting room. Petra was on her way in to see me so I sent her a text that I was no longer in the blue chair.

After some 15 minutes I was called into the room to see her. She jumped straight into asking how I was, how she wants to harvest my stem cells etc, then she said “oh, your results are in and they are fanbloodytastic, you are completely cancer free, it’s an amazing result. Congratulations”.  That sentence flowed through me with an intensity that I imagine a junky feels when heroine enters their system. I looked at Petra to see pure joy in her eyes. The oncologist continued to say stuff but I don’t really remember it. I felt tears well in my eyes as I was starting to understand what all this meant and I thought about the last 9 months.

The oncologist then said “lets look at your pictures” and she quickly accessed the before and after shots of my abdomen. I have never posted this or told anyone other than Petra but I had nearly 50 tumours when I was diagnosed. My abdomen, stomach and behind my lungs was a sea of black masses. It scared me shitless and I carried that image with me.  Anyway, my new scans show only pristine white. Nothing. Clean. I love that scan, I do.

As I stared at this image the good Dr then said, “I better let you go, you don’t have an appointment with me you know, I slipped you in, people are waiting, great news, will let you know when the stem cell harvest has been arranged”. With that we were summoned out of her rooms and I we started the slow stroll back to the cancer day unit.

On that walk back the tears flowed as it was all a bit much to take in. The nurse asked if we needed a room but we declined as we knew that my chair was in demand and I had already pushed back the schedule by 45 minutes or so and someone was waiting for their juice. We sat silently for a while as it was not appropriate to talk about our good fortune when surrounded by so many still so sick around us.

When the infusion was over we left and allowed to all to happen.

Late last night we sat our girls down in a circle on the carpet with Mika the killer dog in the centre. I told them all the great news. It was a wonderful moment. Each girl responded in their own way but the relief and joy was obvious. Lily, the super competitive one where everything is defined by a ranking, a ladder, a test, a result, leaned over and whispered into my ear “you kicked its butt dad, you did it”.  I loved that.

So now what? Not really sure. I have 2 years of maintenance therapy, 3 monthly assessments and a few more little procedures, but ostensibly its over. I live. I enjoy. We cease to worry.

I want to thank all of you who have provided us with support directly and indirectly. The phone calls, the texts, the emails, the blog comments, the food drops, help with the kids, the sporting help, the motivation, the positive thoughts, the counselling, the guidance, the listening and the advice. All invaluable.

I want to acknowledge the partners I work with all of whom took on the additional responsibilities, travelled more, worked harder, stressed more, spent considerable time away from their families to keep it all ticking over. The Deloitte partnership has been amazing, the tone set from the very top, in allowing me complete freedom to focus on getting well and the needs of my family. I have no doubt this has been a major part of my healing. No doubt.

There is no need for me to comment here on the efforts of Petra who at every step was with me on this journey.

Cheers

A good day

A good day.

A good day

Today was less eventful in terms of tapping into a good blood source. Thankfully!

The Rituximab went in over 3 hours and I tolerate it very well with minimal side effects. Felt a little flat for a couple of hours but that passed quickly.

Nice to have that done. I have now slotted into a 2 monthly Rituximab cycle for the next 2 years. All very manageable.

Being in the big blue chair is always confronting and challenging. Although my treatment is tolerable it does bring back a raft of emotions which are tricky. I really felt for a number of patients today who were being given some really strong chemo and other drugs. The lack of privacy for all makes it so much harder. I found myself just watching the system at work and thinking of ways of improving it. I will look to get involved and see what I can do to make a difference.

The family attended a school function tonight at which Alessia and other students presented their special projects to the school and parent community. I was really proud of Alessia efforts in preparing and presenting. One of those proud parent moments!!

Feeling great.

That’s a nice vein

Today went well although a bit tiring. My last CAT scan episode resulted in the IV falling out during the process and warm contrast squirting all over me. Eventful but not great fun and a little sticky.

Today I mentioned that episode to the nurse with a little humor really to help ensure it would not happen again. Little did I know that this time it would not be contrast but my own blood running everywhere!

In fairness my veins in my arms are pretty stuffed after all the chemo. Some have shrunk, hardened, corded, disappeared etc. They are also very sore to touch.

The nurse tried hard to find a suitable candidate for the IV. One was found at the base of my right bicep. The nurse also had to collect 4 vials of blood for various tests to be done. This was not usual protocol as this would normally be done on another day but for efficiency my trial oncologist thought it would be a good idea to minimize the multiple pricks to my arms and collect blood during this one procedure. Made sense to me.

What happened next was pretty funny. I found myself in the chair, my right arm out, a large IV needle sticking into my bicep, blood squirting both through and at round the IV, running down my arm, pooling on the chair, dripping on the floor, the nurse in a mild panic, trying to attach a needle to that thing, turning it round and round, calling for help, asking me for help, I had blood all over my left hand as I was trying to stabilize the IV and then I accidentally touched my face smearing it with blood. The nurse strangely removed his gloves to get a better grip which I thought was not right ended up with my blood all over is hands, under his fingernails and then on his forehead!!

When help arrived I could see the look of surprise and mild fear on the helps face, it looked like I had been shot in the arm!! They both apologized continuously and I was doing my best to calm them down. I just wanted it done.

Anyway when I was cleaned up it all went well. I will end up with a decent bruise on my right arm but that’s about it.

The PET scan went smoothly although again issues with getting to a good vein. I am thinking about tomorrow mornings Rituximab transfusion and the search will continue. Maybe they will use my thigh!

Had a good nap when I got home as I felt pretty washed out. Now feeling really good. Watching QA, interesting topic.

A biggish day

A biggish day.

A biggish day

Up earlier today to have breakfast before a biggish day. I have to fast from 6.30 am as the PET scan, cancelled last Friday, has been rescheduled to today as well as a CT scan.

The day starts with an assessment with my oncologist, then a CT scan and drive to another hospital for the PET scan. Should be all over by early afternoon. I will then be back in the big blue chair on Tuesday for my first dose of Rituximab under my 2 year maintenance program.

I expect there will be another meeting scheduled with the oncology team when today’s test results are available to discuss how I have ended up.

Feeling really good at the moment. Physically I feel almost normal. My sleep pattern is improving and the bouts of fatigue are diminishing.

Well worth the read

Well worth the read.

Well worth the read

I purchased the Jim Stynes book “my journey” on Wednesday and started to read it today at 2 pm.

I have just finished it. I have never read a book in that fashion, consuming it in two sessions (had a break for dinner and to play with the girls).

I got a lot out of the experience and I am better for the read. It’s well worth reading, although maybe at a more relaxed pace.

Happy to lend it to anyone that wants it.

The machine that goes ping

The hospital called this afternoon to inform me that the PET scan “machine” had broken down and all scans this Friday have been cancelled.

Not much I can do about that other than accept it with a smile.

I imagine it will be rescheduled for sometime next week. This will mean my appointment with my oncologist and team for this Monday afternoon will need to be deferred and I will have to wait a little longer for my results.

I least I don’t need to fast and can go out for breakfast tomorrow morning. A few more days won’t make any difference.

Petra and I attended a Lymphoma patient and Carer seminar this afternoon. It was really interesting. Leading specialists sharing information on latest treatments etc. I feel much better informed.

Met a couple of people who participated in the same trial as me who are in full remission and loving life! They heard me say a few things to the group today and sort me out after the session to share their experience. Its like a strange club! Instant bonding.

I feel really fortunate and thankful to have been offered a spot on this trial as the specialists not involved with it where saying today that the drugs represent the new standard in treatment. The key is to get it approved in Australia so it can be offered freely to all that need it. Apparently this is still many years away. If you want to access this treatment now you need to travel America at a cost of around $150k. Not good.

Throwing the leg over

Yesterday I threw the leg over my mountain bike for the first time in over 7 months. Together with a friend we went for a mixed trial ride. I have to admit I was a little nervous before heading off.

Lucky my co rider was very gracious in terms of setting the pace but after about 2 hours we completed just over 26km. I was very happy with the ride. It was great to ride, to talk and to enjoy what was luckily a beautiful sunny early afternoon.

I have pulled up a little sore and tight today but some stretching will help.

Looking forward to picking up cycling on a regular basis again and I think I am not to far away from reacquainting myself with my gorgeous Italian carbon fibre mistress. My road bike!