Calm before the storm

@byo_boy,  I am delighted to hear the stuff arrived on time! 

Hi George and Rebecca 
Good to hear things are going ok.
I had a lot of heartburn and acid reflux during chemo (particularly on the AC) rather than nausea.I had to stop eating a lot of acidic things, some fruits, orange juice etc I craved ice cream during that time funnily enough, probably my body wanting less acidic foods.
My gp gave me pantaprazole which helped me a lot, it's taken in the mornings before food and is proactive rather than reactive like gaviscon. Check with your team to see if that is an option or whether they recommend something else.
It's a bit of a relief to have the first chemo round over because you know more what to expect for the next rounds. You'll also get used to the patterns of each cycle of chemo and be able to work with the good and bad days. 
I have my last radiation treatment ("fraction") tomorrow so I am gradually seeing the light at the end of the tunnel....you will get there too....it's a long haul but you will get there!!!

@iserbrown - Thanks for the message and link, I appreciate it. As a family who's barely had the flu for 10+ years, this is all new and scary to us and obviously I'm still trying to figure things out, so I am grateful for info like this.

I'll definitely make an appointment and get this done - as you point out we may be able to ask for the last appointment of the day or similar. As I mentioned, I think the lack of sleep has just made me grumpy when really I just need to crack on.

Thanks!

George

byo_boy 

With regards the Exercise Physio, I had a bit of a whinge at Rebecca's GP yesterday because they have basically refused to give her a referral or Care Plan without a consult - they are 35 minutes away and I'm loathe to have Bec sat in a waiting room for 45 minutes with snotty kids etc so that her GP of 20+ years can "see her" and "discuss



George

George
A GP is required to do a Care Plan in a Consultation process

https://www.medicaldirector.com/news/clinical-practice/how-gp-care-plans-benefit-patients/

I suggest you make the appointment,  when it's time, you go in to see how many are before your appointment to reduce the waiting time in the rooms.

Hi everyone,

@Paris_24 - that's great advice, thank you - Rebecca's folks live on 7 acres out at Toowoomba, so we might organise to head out there for a weekend of peace and quiet, although they're currently having -1° starts so it's going to be chilly there too!

We're halfway through Day 5 after round 1 and so far have been very fortunate to have minimal / manageable side effects, - that said, the biggest issue right now seems to be heartburn and indigestion, so I've started doing smaller, more bland meals and hopefully that'll help, but we've also asked the team at the RBWH for a prescription for something that might be a bit more effective than off-the-shelf Gaviscon tablets.

Other than that it seems like fatigue and bit of brain fog (having a good night's sleep seems to make all the difference) are the other main things we've noticed. Rebecca is still managing a daily walk of 1-2 KMs around the block and not missing any meals or anything which is a real testament to her resiliance.

@Coastiejas - yes, I think exercise seems to help 100%, but, as you say, we're definitely listening to Rebecca's body and if she's feeling a bit flat we don't push it at all. I believe she has a session with LGFB next week which will help with a lot of stuff too - they seem very good! With regards the Exercise Physio, I had a bit of a firm discussion with Rebecca's GP yesterday because they have basically refused to give her a referral or Care Plan without a consult - they are 35 minutes away and I'm not keen to have Bec sat in a waiting room for 45 minutes with potentially sick people etc so that her GP of 20+ years can "see her" and "discuss the options".

@GinGin - you'll be pleased to know that our ice gloves / socks arrived today and they're great quality with lots of spare ice packs, so we should be ready to go when the Taxols start in a couple of months :)

Hope you're all having a lovely week other than that and staying warm in this chilly weather!

George

@byo_boy sounds like you two are well on your journey and Rebecca congrats with the first one down.  My experience has shown side effects can change and evolve so it isn’t a failure if something does crop up -  the chemo is just doing its job as it’s meant to break things down - we are all so different.  I like that you have good planning and that no doubt helps in looking after Rebecca.  While on the AC ( you’ll work out when Rebecca is feeling ok) I would highly recommend a weekend away or get out and about in that second or last week.  It makes the world of difference with a different view from home - even if you just lay around, heal and is good for the relationship.  I have found it is a bit harder to get the time, energy and it’s chilly at the moment moving through the weekly Taxols - no weekends away but some little day trips, like the French Festival break it up - so it’s not all about the medical because that’s how it sometimes feels.  Good luck.  

Hi George and Rebecca 
I was wondering how things went yesterday.  Great that you are organising an exercise program, I had one through the hospital which was tailored for cancer patients and lymphoedema,  it helped me a lot. I also find qigong and meditation is great too. Look good feel better have some free online courses (lgfb.org.au) that are worth checking out.  I was told that the best thing for fatigue is exercise, which sounds kind of counter intuitive but sometimes when you push through you actually feel better, other times you just have to rest and listen to your body! 
All the best.

Hi everyone!

@Coastiejas - Thanks - the onco nurses thought the journal was a good idea and I'm already filling it out on day one of treatment - it's pretty useful! I had a quick look at the Osara Health program, unfortunately I don't know of any equivalent up here. I did call the QNMU which, as a nurse herself, Rebecca belongs to, but unfortunately all they have is a support officer and a reduced membership fee for those going through this sort of journey. Also, we were given the option of having a dietician contact us today, so we'll definitely do that.

@Cath62 - Yes, we're just on the Northside, I hadn't heard about that program, but will definitely look into it, thank you! The Wesley is a little bit of a slog from our place (45 mins - an hour depending on traffic), so might be more of a casual visit than something we'd do regularly, but 100% worth checking out.

We've just organised a GP Care Plan referral for a local Exercise Physiologist who we're hoping to get some advice and a plan from - I think we get 5 free consults before we have to start paying. It definitely seems like there's plenty of options out there which is great to see :)

Thanks for the tip on the juice - we've bought the right fruit and veg to do the same and it goes down a treat, so we'll continue to do that as often as possible, especially as Rebecca's appetite changes. We had our first AC chemo today, so we're still figuring out how Bec's body reacts - the actual treatment went very well with no adverse issues during administration - she had a little nausea an hour or two ago, but then managed to get dinner down (and even some chocolates from her work colleague's care package!), but she's now headed off to bed feeling a bit wiped out. We've bought a bunch of mouthwashes, toothpastes and soft toothbrushes to make sure she takes really good care of her oral hygiene. We figure if we get into a routine from day 1, it'll stand us good over the course.

Really appreciate the info :)

George

Hi @byo_boy, just noticed your in Brisbane. Do you know there is the Choices Program at the Wesley hospital. It's a charity, originally set up by Kevin Walters on behalf of his wife, Kim. You don't need to be a patient of the hospital to access it. Check out the website. They offer free yoga, pilates, reflexology, gym, counselling , art therapy and much more for cancer patients going through treatment. It's just wondering and enables your wife to connect with others going through treatment. Here's the link https://www.wesley.com.au/services/the-wesley-hospital-choices-cancer-support-centre

The journal is a great idea. You will find that invaluable as you move through treatment as each time you see the treating team they will ask what side effects you had and when. With everything that's going on you tend to forget things as well as the chemo brain fog. I found writing stuff down helped my team pinpoint what was causing my symptoms and then suggest options to make things more manageable.  In my case the steroids seemed to cause a lot of my issues rather than the chemo so we tweaked the dose. I also did a great program focused on the lifestyle aspects of cancer treatment which was free through my union, I'm in NSW and noticed you're in Queensland so not sure if there is anything similar up there, but I'll copy in the website so you can have a look and it may be useful for others reading this thread. They have a program for patients and also one for caregivers.

https://osarahealth.com/en-au/psacpsunsw/