2nd May – Home Day!

I knew there was something I loved about this ward, 2 rules the nurse said. 1. No flowers, 2. No children under 12. Um…I think these rules were written for me personally. People always send too many flowers, even though when I get them I love them, but logistically they are annoying sometimes plus they seem just something people react to much too quickly. Depends on my mood i guess. Tulips are different, there is always a time and a place for Tulips!

I’ve used every last gig of my phone plan streaming Housewives of Melbourne, so Telstra I’ll need some more pls! HCF paid for my tv, but I can’t say I watched much of it J Not a lot to choose from except the lego movie on repeat. ‘everything is awesome’ (thanks to Sez visiting) is all I can hear now.

I texted Gary early who is at the airport, so bummed I won’t see him when I get home until Thursday evening. Having a few days to himself at home I hope has been at least reprieve from a few things.

I was actually pretty excited about breakfast this morning, I think that’s why I was up and awake from 5:30am, ABC news on, coffee from the patient kitchen ready for Muesli AND Scrambled eggs. First time I ordered a hot breakfast. The things you get excited about right J I quickly got unexcited about the eggs when I got them.

I popped out of my door at the end of the corridor, there is a window overlooking St Leonards. The window is so warm, I leaned against it and drifted out of body for a moment. Quickly coming back as someone pushed their Nurse Call buzzer which rings out everywhere.

I headed up to cardio unit for an echocardiogram – the machine shut down from overheating towards the end, so he had to blow some dust of it and power it back up. Then nearly pulled my port out my chest taking the chest pads off. Painful moment avoided. They found some fluid on the lungs but the heart seems fine. Heart murmur still there, my littles spastic valve trying to beat away! So the registrar said they will prepare me going home if Dr Arthur is happy after an x-ray of my chest.

Ok, so I think I horrified my respiratory Dr, and the Haematology Registrar, both thinking I’m mad for wanting to run 7km in 2 weeks’ time. Although advising, your body will tell you, I’m Mez and my body only tells me ‘do more’, so I’m going to do something that makes me teary even typing it….I’m going to take the Dr’s horrified face, implant that into my memory combine it with the memory of this entire week just gone and that I have re-prioritised AND pull out of the SMH Half Marathon. I’ll be there as a support person of course and wave the #teammez flag as people run past. I hate doing this, it was something I really wanted to prove to myself that I could do during Chemotherapy, when a lot of people can’t do in normal healthy life. I’m very disappointed. In my body, in my mind and I hate that I got Cancer!

*Warning: Going into depression mode for a minute*

I need to find my purpose for this whole thing….that will put me back on track. I think I’ve exhausted google images “inspiration for people with cancer”. Now to eat the words I’ve posted on FB and Instagram!

I finally escaped this place at 6pm - after waiting 2 hours for my take home meds, unexpectedly eating dinner, and dying to get into the fresh air and cab home.

I now have 20 pills to take daily for antibiotics, steroids, another antibiotic, folate tablets for vitamin B, panadol. 

Thank you to Sez for being home for me tonight and looking after Stewie, i really don't feel well. 

1st May 2016 – Penultimate Day?

CHEMOTHERAPY - LETTER R for (he is grasping at straws for this but I love it) Retro Records! Yes he bought me an MP3 player to replace the last 2 I’ve lost on planes. This one came early because of being in hospital. Presents left include ‘APY’ good luck Gary with Y! That’s a tough one.

My best sleep yet in here, and both times I was in dream land it was ‘knock knock vitals check’ I think we should just have to leave an arm out and they don’t need to wake you hahaha. Not sure how that would work with the temperature check but I didn’t work all of it out. I woke thinking "only one more sleep" Yippee. Which no different to my situation, is something you usually count down to an upcoming trip or exciting event you have been waiting ages for.

Biggest things I’ve missed? Sharing my bed with Gary, Stewie and walking! I’m going to sleep standing up from now on I think. But I have spent time doing things I generally don’t at home, like updating my blog finally, emailing my family overseas, colouring in and updating my social media on @ozwwcwc my new support group for women battling cancer without children who a career focussed as I feel there is something i can talk about first hand. So I’ve been productive.

It’s raining outside so I’m not missing anything out there. I’ll enjoy my last day of life contemplation before back to some kind of life tomorrow.

I moved after lunch to the Hematology ward 8E. Again my own room, another isolation type of room, but this one has a mini bar fridge! Bonus. It’s nice and private, but then you do have to wonder what our bodies have the ability to do and expose others to, is pretty scary.

I’ve refocused my time now onto reading anti-cancer by Dr Servan-Schreiber. My aunty gave it to me, and it focuses on the healthy side of preventing cancer. ‘A new way of life’ which is exactly what I’m currently searching for on all levels. Lifestyle, food, cut back on cancer promoters and eat LESS sugar (as I finish a chocolate).

I never wanted learn much about all of this, the cancer, the preventers, the promoters etc, but diet and health will always interest me as it should everyone. I was so healthy before this happened, so it isn’t ALL lifestyle. Unless red wine causes cancer then I’ll die very young :-) BUT I think we can take tips from someone who has spent years studying along with his experience and gather some tips from it.

Sat outside for a while, besides almost losing my gown from the wind, I also couldn’t really open my eyes from the sun, I decided perhaps my bed is a better idea.

Now that I’m another ward, they clamped by portacath and I no longer have my robot SBU. he has left my side, for now I’m free. Well free to sit in bed and wait.

Gary and Sarah did their daily visit and chat. Cup of tea of course and home. i get home tomorrow and Gary flies to Melbourne and hobart so ill see him Thursday night. Not ideal, but life. Sez is my housewife for the rest of the week I've been ordered!

My dear neighbour the Entertainer

No hope of me being bored when i was in the Burns Unit when ‘Patricia’ is awake. I just heard her singing “I’ve got a cannula, I’ve got a cannula….” On repeat to herself. She has upgraded from talking to herself to singing now. At least she is entertaining herself.

The last Dr dressing her leg said he had to go but he would be round, she asked round like what? He replies like a rissole…but she said they are kind of flat not round, round like a wheel is better. Dr – you’ve been told!

After yelling out for the nurse for 20 minutes asking where has everyone gone?? The nurse arrived, and she instantly said oh sorry did I yell too loud? Funny! There’s more I could write back I haven’t been keeping track, should have though, it would have given me great content for me blog. I hope she gets better soon. 

April 30th – Welcome to Planet Bored and hospital food..

Now that I was feeling well enough that i could be recoveringat home - although we still don't know what kind of infection it is until Monday's results et back - I started to dislike the room and this bed, but Gary brought my colouring books, music on a usb for me to set up my new MP3 player he gave me for my next chemo treatment (which is cancelled until further notice) so I loaded it up, played some Dolly Parton and began colouring in. I managed to escape. 

I also found out, after offering the nurses chocolates unsuccessfully, that there is a veranda attached to the ward, so when Gary came back from his non visiting hour period, we went out and enjoyed the warm fresh air. I wouldn’t have been well enough to do it anyway until today, but I did think I’d been missing out the entire few days not knowing about this.

 It will be my special outing for tomorrow! Sez my angel and Gary spent dinner with me and headed off so I could settle in for the night. Crazy Saturday Night plans!

I did ask Dr Arthur about the upcoming SMH half marathon that I was running in 2 weeks’ time, after ab bit of umming and arrrghhing, he said ask respiratory Dr and take their judgement. I don’t think there is much chance, but perhaps if I promise to not challenge myself. Then again, as I said to Dr Arthur, we are talking about me! Challenge is the only way I know that makes me feel good about myself..

April 29th – Blood pressure Alert!

So the temperature is all under control, but next is project lower blood pressure! Everyone was in a frenzy about my blood pressure, constant monitoring, 2 different machines and both arms, then a manual machine which all showed BP of in the 90’s. Drink more water! They said to me, I tried and must have pee’d 5 times that night, but managed to have it come up to 110 in the morning and my Nurse Lucie, actually nearly high fived me she was so excited. She did actually do a little dance when she checked back in to make sure it was still level. Amazing nurse. They all are amazing.

April 27th – 38.2 temperature – next stop Emergency Mr Cab Driver!

I hit the gym at 745am, lasted 13 lunges before I went into a fit of coughing. Ended up heading downstairs and doing some machine leg work for an hour. All I could cope with. I headed home ready for a day of Quarterly Business Reviews for work where I would stand up and do my presentation I’d spend 1.5 days and lots of caffeine completing. When I got home gary pestered me for 15 minutes “check your temperature” sure sure but it will be fine. 38.2 was on the screen after the beep and I had to google the ‘go to hospital’ figure again because I had in my head – surely 40 is the bad figure not 38 – but I rang the Northern Cancer institute and she advised go to hospital. So I did! In a cab 15 minutes later!

When I got there they admitted me immediately under category 2, straight into a bed with loads of suction pads taking all my vitals, I had a temp of 37.9 then, resting heart rate of 122, oxygen below 90 so I went onto oxygen tube and liquids/antibiotics in my portacath. Bloods and cultures taken (cultures I found out are those little germs that grow in science labs that are living in your blood). Don’t know what results look like yet, I imagine a few little Mez creatures roaming around the blood lab in the hospital. I hope they break out and start a colony.

I felt pretty crap, moved to the burns unit as no beds in Haematology ward, and stayed overnight. 5 Dr visits in a few hours had me being moved to the Respiratory ward and a bronchoscopy booked in for Friday morning. Followed by results of that determining the rest. But I knew another night or two would be the immediate diagnosis.

A viral swab taken from through my nose and pushed down my throat, meant I was in isolation until they knew the results. This is to protect everyone coming into the room in case I had some flu virus I’m sharing with all the healthy people around me.

fitness training disasters

April 17^th 2016 - SMH training run disaster

Thinking this was a good idea, I went for a 7km run around darling harbour/circular quay. Looking down at my Garmin I realised I had never run so slow in my entire life. I actually thought of jumping into the harbour and ending it all it was so painful, but I thought that beating cancer, surviving chemotherapy and all the people who die from cancer were way more important than my pace. I kept going, I thought of my #teammez teammates who have signed up to the half marathon and I pushed through.

Just saying…..I paid for it by sleeping ALL afternoon with chills and needed hot soup. I won’t do it again.

April 20^th 2016 – Crying at the Gym

Today I realised with help from husband and my PT trainer that I need to settle down and step back. Im torturing my body enough with chemicals and 2 doses ago I realised that I felt worse than ever and that my time of juggling everything successfully or what I tell myself is successfully, perhaps is over. O V E R. 

I thought perhaps its just autumn chills and fighting colds. My immune system blood results are ok for a chemotherapy patient, but my body feels like it is shutting down, day by day. I feel about 50% ability to function with pain in my muscles and bones, sleep deprivation or at least broken sleep not good rest, and I never nap during the day or outside normal bedtime hours. Something I remember having suggested to me when I need it but didn’t feel any better when I tried, but now I realise with 4 chemo doses to go, I am getting worse.

This morning I cried at the gym after a 10 squat set with my PT Trainer, Sun bless her knows my body so well and has adapted my every session individually so by now she knows my facial expressions and how to get me through one hour and when to do core instead of cardio, or weights instead of boxing, or when to decrease the weight on those damn kettle bells (luckily this morning she removed the kettle bells altogether and I had no weight), she is my angel right now. But this morning even she couldn’t stop the water works. The reason was tension in my body, frustration with not being as capable as ever before, and feeling like I let her down with my decline in fitness. Stupid I realise, but I value fitness so much and besides my husband’s emotional support, Sun has kept me going since January.

That’s not the worst thing I guess that happened, there was a gigantic huntsman on the gym wall that made even my hard-shelled tough javelin throwing South Korean personal trainer couldn’t go near. We both thought death was the only option. I’m talking about the spider of course, although I did contemplate my own after squat number 3, 1 minute into an hour session.

New Letter Present and Chemo session #8 - 4 to go

 15^th April 2016

CHEMOTHERAPY - LETTER E for eReader – Gary bought me a Kindle eReader! LOVE!

Today Britta gave me her special recipe for mayo - a Danish specialty called Remoulade. She has been such an angel through all of this J she is here most days and in Sydney she is a part of a lot of cancer organisations include Can Do and Cancer Institute.

Today the port was much better, not only is it much less painful to touch these days, Paula had gentle hands and I hardly felt it during chemo. The punch going in will never be painless but it’s def not the worst thing I deal with on chemo day. Today I also had the monthly ovary stopping injection, thanks to Kenny frightens the hell out of me but also a blessing so I don’t need to worry about that particular womanly function.

Update from the SMH Half Marathon! 26 confirmed registrations as of 15^th April – I have husband, friends, work colleagues, distance work colleagues and ex work colleagues all registered and what an amazing effort from some friends who rarely run or hate running (not mentioned any names Sez) unless a beer is at the end of it. I’m so proud of everyone. And yes don’t worry there will be beer at the end of it. And I was in the top 10 fund raisers but now am just over the number 10 spot. Instead I’m aiming for finishing because these days my lungs have really started to give me grief.

A nose sore, rash on my neck and lungs that feel like they have packed it in. Walking up and hill and talking at the same time is now something I just forget about, feels like I’m breathing in the coldest of Scottish country air and then they respond by an inadvertent cough to remind me stop trying to do too much. My personal training sessions and now involving a lot of groaning.

It also seems that everyone around me is sick. So I’m using a lot of hand wipes and Dettol. I forget most of the time I have to be more careful – it’s easy to forget it only takes a small germ to cause me issues.