Calm before the storm

byo_boy

Hi all,

We have our first dose-dense AC treatment this Friday for Rebecca and while we're really glad to have some sense of momentum and control now with the treatment plan, I'm trying to get organised this week with meals and am a little out of my depth as to what to expect. Normally we'd write a meal plan for the week, pre-order the ingredients for those meals and basically just roll with it, however with chemo coming up, we're not 100% sure if that's going to work any more, especially with changes in taste and appetite. Our plan is to try and stick to the routine as much as possible and keep meals as healthy and varied as we can to ensure good nutrition and healing, but obviously will have to test and adjust as we work through side-effects etc. I've done some research and it seems like a lot of websites are suggesting sticking with somewhat normal meals, but maybe just a bit blander / different in texture. Other sites say do more regular, smaller snack-type meals, so maybe a mix of both?

I'd really appreciate any tips you might have with regards planning for meals etc, particularly during the first few days of treatment.

Thanks

George

AllyJay

Hi to you both and good luck with chemo. When I was on AC chemo, I more or less lost my sense of taste...well not lost, perhaps more changed would be a better word. My mouth tasted like an old, wet dog smells and most foods just tasted like boiled cardboard. I went totally off chocolate and also coffee. I developed a liking for salt and vinegar chips as the sharp and salty taste seemed to get through the wet dog. I had problems with mouth ulcers and found that acidic foods such as tomato, orange juice, pineapple and the like, burned my mouth. I found the lemonade icy poles really good to numb my mouth before eating, and again, the slightly tart taste made my mouth feel fresher. Each person has different experiences, and as a dietician(from a large Sydney hospital) told me, "If you can eat it...eat it...you can worry about 'healthy choices' after chemo."

unicorn3

Hello.  You will get lots of different responses on this so you might just have to play it by ear the first week or so
i didn’t lose my taste or appetite on chemo and had no nausea or trouble with mouth ulcers so I was able to eat and drink normally with a few exceptions, some foods gave me indigestion, mainly richer foods like creamy sauces ect but that was easy managed with quickeeze
The day of chemotherapy I usually wasn’t very hungry and just had smaller serves, like Allyjay I found salty foods went down really well and even a bit of takeaway like fish and chips seemed to help me feel better 
We still just did our weekly meal plan and shop and most nights I was ok to cook or help cook
Home Delivery of groceries was very handy and also having a few meals in the freezer for nights when we couldn’t be bothered cooking 
Having 3 kids that obviously still needed to eat we found just keeping the regular routine worked and if I didn’t feel like dinner I just popped my serving in the fridge for the next day. 

I struggle to drink enough water so I found icypoles and cordial kept me hydrated
Best of luck

GinGin

Hi George,
For me, the side effects of AC kicks in around the 5-7 day. It got worse after each chemo treatment as the effects are cumulative. Rebecca’s taste bud is not likely to change dramatically after the first chemo. So hopefully, it is safe to stick to your normal meal planning routine for the first treatment. 

Subsequent meals planning may likely be challenging as taste buds change. Also on two or three occasions, I spotted ulcers. I was able to ‘catch’ the ulcers before they become full blown ulcers and applied Kenalog as soon as I spotted the ulcers developing. 

During AC, the nurse had me sucked on icy poles throughout the treatment to minimise ulcers. I got the ulcers during Taxols (= Paclitaxel) as no icy poles were deemed necessary for Taxols.

I engaged a BC dietitian during chemo. She recommended up protein intake ( plenty of chicken, fish, eggs, legumes, nuts and seeds). However, just like what Allyjay mentioned,  if I was struggling with food, my dietitian wants me to eat food that makes me feel better /good and don’t worry about the ‘healthiness’ of foods during that period. On days where I absolutely didn’t want to eat, my dietitian had recommended for me to drink milo with milk. 

I know some ladies had a few small meals. I had my usual 3 meals(if I was up to eating) and snack in between with fruits or nuts. Breakfast was one meal which I didn’t skip though. If I wasn’t up to eating,my hubby will quickly whipped up a simple soup for me.

Hope the above helps. All the best for the first treatment.

Katie46

I kept most of my taste, and had no nausea on AC but totally went off coffee (which I love), it tasted musty. Dinner after chemo was always mash potatoe and veg. I seemed to crave lots of veg, and ate much more fish, lots of veggie stirfrys, and soup. My love of coffee returned when I switched to paclitaxel. Best wishes for Friday.

KRW

Hi George, I just want to say how thoughtful you are to be looking after Rebecca so well and planning ahead.  Some of us don't have that added extra care and I'm sure it will put her in good stead for handling the treatment.

I am still on my first set of Carbo/Taxol treatment and have (at week 6) really noticed a change in taste sensations - everything I used to love tastes bland - which is so frustrating when you sometimes just want comfort food.  But being on steroids does seem to have increased my appetite at times - though I appreciate AC is a different concoction.  

I think you'll be 'playing it by 'ear' for a little while seeing what goes down easily, stays down and also what tastes good.  A friend of mine said that sometimes it may be that you have to try foods you haven't tried before in order to get the 'taste' sensation.  Good luck. And be gentle on yourself as well.  You are doing your best.

Coastiejas

Hi George and Rebecca 
Everyone is different with their experience of the AC chemo, I found eating a challenge initially and remember sitting at the table eating rockmellon and zucchini together because that tasted good to me! I had a good tip from the pharmacist, sometimes people mistake nausea for heartburn,  that was certainly my experience, I  didn't get a lot of nausea. The heartburn was well controlled with pantaprazole and that allowed me to eat. Also I was given a 5 day anti nausea tablet on treatment day and steroids to curb nausea and Maxalon and gastrostop on hand to take home in case of vomiting or diarrhoea. My oncologist told me to eat whatever tasted good to me ( even if it wasn't a healthy choice!), I had quite a bit of altered taste sensation and it is 7 weeks post chemo and it's gradually coming back! I am still not able to eat garlic, chilli and curry. The cancer council have a really good publication on cancer and nutrition that has lots of good tips:

https://www.cancercouncil.com.au/cancer-information/living-well/nutrition-and-cancer/

Hope that helps you.

Best wishes for Friday! 

Coastiejas

I forgot to say you can also ask for a referral to a dietitian as well.

byo_boy

Hi everyone - thank you so much for your messages, each of them really helps to just clarify things even further. Given everyone's experience and just how individual a lot of the experience seems to be, I think our best option is to just strive to find a good balance and basically just "play it by ear". As some have said, probably not worth getting super hung up on "ultra good", but rather just really work through the side effects and try to fit in with what's doable while still trying to maintain a healthy standard.

I've also spent today throwing together a chemo treatment journal (thanks to @GinGin for the inspiration there) which I'm going to use with Rebecca to make note of any symptoms, mental state, diet / fluids etc - hopefully that'll also give us a bit more insight as to any patterns that pop up and when things might be better or worse, especially around diet and fatigue. Would welcome any feedback on this too

I'm so grateful for everyone's help on here - it really is making this process much less scary and more manageable - thank you all

George

Cath62

Hi @byo_boy, you have lots of good tips there. I ate whatever I wanted during chemo.

I drank lots of water in the couple of days before and after chemo to help flush it through. Walking is also good if Rebecca is up to it. 

In addition to help my liver process all those drugs I made a juice every morning of celery, beetroot, carrot, ginger and berries to sweeten it. Beetroot is a great liver cleaner.  It made me feel good.

I ate lots of vegetables and healthy food and hardly any sugar. It was how I always ate so no real change for me. 

Take care of Rebecca's skin and mouth is important. Chemo is very drying of the skin so lots of moisturiser. I used moogoo products because there are no chemicals. I figured I was getting enough chemicals and wanted natural products. 

We mouth hygiene it is important to floss after meals and gargle with salty water. I did this after every meal and never got a single ulcer. It is very important to floss to get any food out because any bacteria left in the mouth will cause ulcers. 

Take the steroids with chemo to ensure no reaction and then if tolerated try to reduce them. Take the antinausea too as that helps. Having  said that I only had nausea once.

We are all different but I did tolerate chemo ok. I had 4 months of it. 3 x AC and 9 taxol. I was meant to have 10 taxol but I got neuropathy in toes so they reduced my dose and I had one less treatment. 

Good luck to you both.

Coastiejas

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/

Cath62

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

byo_boy

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

Coastiejas

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.

Paris_24

@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.  

byo_boy

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