Chemo Impact & required support

NikkiLea

Hi Ladies,

My Mum will soon be undergoing 4months of Medium Chemo, followed by 5 weeks of Radiation, then 5-10yrs of oral medication.
Firstly I'm worried how unwell she will become with the Chemo & how much support she will likely need. Then how tired she will be with the Radiation? She has a partner, who's health isn't always 100% & I live a few hours away with a young family.
As you can understand, I am quite concerned. I have suggested putting services in place, but she hasn't been receptive to it.

Any advice would be greatly appreciated. 
Thank you

Sister

I have only done a bit of chemo so far @NikkiLea - others would have more info and there are women here who have gone through it on their own.  My chemo is AC.  I found I needed more meds for nausea which impact on my ability to drive.  I'm absolutely out for the count for a couple of days - I can do very little other than go to bed.  It's important to contact the oncology centre should the stuff they send your Mum home with is not good enough.  For me, the first treatment was the worst but I believe that the last can be a doozy, too.  Everyone is different!  It's important not to overdo it.  Let everything go that's not essential.  I made sure that I had some meals prepared that could be thawed but I've got a family to feed.  I guess it also depends on how strong and independent she is at the moment.  If she qualifies for any services, she should give it a go but you may have to suggest that again when she works out how chemo affects her.  Good Luck

kmakm

Stock her fridge, freezer and pantry with protein rich, healthy food.

Organise her friends to assist in any way they can - food, gardening, dog walking - whatever is a regular activity that requires energy she probably won't have. There are apps and websites for this kind of thing; check out mealtrain.com. Friends will want to help and it's much better when it's co-ordinated. Otherwise a lot of food can go to waste.

Sometimes partners need defined roles. Maybe put him in charge of one thing, like keeping track of her medications if that suits his personality. Reminding her to take her pills with a watch that beeps or somesuch.

Cleaning. If there is the money, organise for a cleaner to come in once a week or fortnight. If your mum qualifies maybe the council can help.

Does she like watching tv? If she does, and doesn't already have them, arrange a subscription to Netflix or Stan, or both!

Encourage her to walk daily, even just a little when she is most fatigued. It's been proven to relieve many of chemotherapy's side effects. Perhaps some friends can walk with her?

Make sure someone can drive her to and from chemo. Some people manage to drive themselves but I couldn't as I had to take drugs to counteract an allergic reaction that made me very drowsy.

She may not be receptive to these suggestions now but could be as the treatment approaches, or commences. She may be in a bit of denial, which is very common. Be mindful that the effects of chemotherapy are cumulative; what is mild in the first cycle can be severe in the last.

I was urged by every medico I came across to accept all offers of help. I didn't want to but realised I had to, so I did and it was of tremendous benefit. It has strengthened and deepened many of my friendships, a relieved the burden on my family.

Perhaps you could put it to your mother like this:  if it was your friend who was having chemotherapy you'd want to do anything to make it easier for her, wouldn't you? People want to help, it makes them feel good. Why deny them the pleasure?!

Good luck with your mother, I hope you make some headway. Let us know how you get on.

Afraser

It's terribly difficult for you as the side effects can vary a lot from person to person. Fatigue and nausea are common but I didn't have either (I was 67). I had 3 months of A/C, then three months of Taxol with 12 months of Herceptin. The oral medication may be an AI such as Letrozole. I have been one for 5 years. Your mother's oncologist can and should provide written information on side effects, but it's a long list, many won't be experienced at all and the severity of what is experienced is also highly variable. Age and general health may have an effect but that's also hard to guage. You only really know for sure when you start. I haven't had radiation, but that can also vary. My best advice would be to do what you can (particularly hard when the person is resistant, but that's also understandable!) to put some support in place for the first 2 - 3 weeks particularly. At least by then all parties will know what's what. You may also want to think about some of the emotional issues - I didn't have too much of a problem about losing my hair (wore a wig and continued working) but it can affect people strongly and impact on what they want to do/where to go. It's particularly hard when you live at a distance and have your own family to think about too, perhaps you can arrange to be closer for a short time at the beginning. My daughter came from Canbera to spend time with me, but as I was remarkably OK, we ended up going shopping a lot! I hope your mother gets through as well, but as @sister indicates, you just have to deal with it as it is. If things are difficult, your mother may bemuch more receptive to some support services. Best wishes

Sister

Oh - and online shopping is really helpful.  I do a big online shop before chemo so that I've got basics in the house and all the heavy and bulky items then just top up during the following weeks when I'm feeling a bit better.  I don't know if your Mum is tech savvy but if not, maybe you could put orders in for her.

duxx1234

I agree @Sister  The first and last dose of AC have been the worst for me!  I’m still trying to get through the last AC dose which was 16 days ago and I start Taxol next Wednesday! 

jennyss

Dear @NikkiLea , Great advice above about possible effects of chemo and radiotherapy, and support which may be needed. Everybody is different. For me the biggest impacts of chemo were fatigue and skin problems. I found I was not able to shop or do housework or cook on some days in my chemo cycles, so help in those areas was really great. If you read the  information about possible side effects, you  will be more ready for whatever may be needed. Best wishes to you and your mother. 

kezmusc

Hi @NikkiLea,

The list of side effects that you get from the oncologist is incredibly daunting and it scares the hell out of everyone. 

 As the ladies have already said it varies greatly and something you just can't know until she starts the treatment.  It's important to remember that the list is long and it is "possible" side effects.  It does not mean she "will get all of them".  As @Afraser has said, some people do get through ok and I feel it is important to hear that especially at the beginning.

I had 3 months of AC and 3 months of Paclitaxel.  With AC, the day of, and day 4 were the worst for me then I got back to somewhat normal.  The 4th round of AC took longer to recover and was the hardest. I didn't drive to and from AC but Paclitaxel I managed quite fine with driving myself there and back. I had some minor skin issues and sun sensitivity but that was pretty much it with that one.  The hardest thing I found with all the chemo was the hot flushes. I managed to keep my hair with cold capping as well so that was helpful.

Radiation (30 rounds)  I had zero problems with this apart from a bit of a skin issue the last week.  Recovered fast as well. 
Throughout all of it (chemo and rads) I worked, shopped, cooked, mowed the yard etc etc, helped run the farm and went out and did all my usual things. 

I'm having some hiccups with the hormone therapy, but again some people don't have any problems.
Fingers crossed for your mum and hopefully she doesn't have too many issues.  

All the best.
XOXOX

NikkiLea

Hi Ladies, thank you so much for your feedback & I'm so glad that @kezmusc your treatment has gone ok for you & you were able to do most of your usual things.

Mum is very diligent at reading everything the Dr's give her. Unfortunately, she's not online, so unable to access services like shopping that would make things easier for both of them. I'm happy to do online shopping for her, but she's funny about her card details etc going online.

I was able to go down for her first surgery, which she did so well, we were out most days enjoying the sunshine!! I couldn't go down for her second surgery & she probably needed more help that time.

I will be going down in the school holidays & hopefully be able to go down fortnightly after that, but it's always when i'm not there one them has a fall or there is some dramatic problem & she nearly always calls me first. I have a sibling & step/siblings, however, their availability is limited & only one is reliable. She hasn't really told many people, however, she has had some offers of help, so I hope she takes them up on it. 

mealtrain.com looks very handy, so I'll discuss that with her & I can make the orders. 

I'm glad I found this group, I must admit I feel a bit stressed about it all myself & it would be much easier if I lived down there. 

Thanks again ladies - I am bound to drop in again & ask some more questions.

All the best to each of you with your journeys,
kindest regards
NL

kmakm

Please do drop back in Nikki if you need to, someone is always here ready to assist. You can always call the helpline too 1800 500 258. Good luck to your mum