Heartbroken, but unbroken

Hi folks,
So...... The first chemo session is tomorrow. Its four sessions, once a fortnight for eight weeks, followed by 12 weekly sessions.
Feeling good about it all. Let's kick this cancer's ass!

Have sent you a private message 

@strongtogether   Everyone has put up some great answers.  But definitely reiterate what Sister mentioned.  If the med's aren't helping with side effects then for sure chase up your Onc or via your BC nurse as I was extremely sick after the first 2 chemo sessions until they changed my pre chemo med's and after chemo medication and it made a big difference moving forward for me.   Don't be shy to let them know something isn't working.  Hoping all will be good though.   xo

Hi Brenda,
Actually my wife is a lymphodema specialist, so that part we have covered. 
Isnt it ironic?

Something you may not have been told or they just skim over it is that after all the lymph nodes are gone that arm can get lymphodema. Mine was at its worst during chemo and a physiotherapist at the cancer care clinic gave me compression sleeves and a hand gauntlet for it. After chemo it did settle down a lot to what it was and now I seldom need to wear the sleeve any more.
The oncologist I saw a fair bit but it was the oncology introduction nurse who showed me around the treatment area who answered most of the day to day questions.

As others have said, your questions are valid but many will probably be covered by your onc as part of the consultation.

Other things to ask (or at least note):
Is a portacath suggested?  Not fun to have but saves your veins (search for a discussion from January 2018 - "to port or not to port" for the feedback I got from the forum when I was uncertain)
Is cold-capping offered - your wife may not want it (it adds a huge amount of time to each treatment) but worth discussing if it's available

And one for later when chemo starts - what do we do if she needs better side effects meds at an awkward time (I speak from experience, here)

Your oncology clinic may offer ancillary services such as physio, exercise groups, dietitician, psychology - or they may have local recommendations.  It's worth finding out about them.  I accessed a bc rehab oncology exercise class through a large part of my chemo and it was fully covered by my health fund as it was run by the hospital.  

Chemo is not a brilliant experience.  I would certainly not put it up there with "must do".  But for most of us it's not as bad as we expected, although your resilience does wear down towards the end.  Unfortunately, the only answer we get as to whether it's working is survival and even that may not be down to the chemo.

Best wishes.

All good questions, none remotely stupid. As the others have said, the oncologist will answer them all and more you haven't thought of as well. Take notes, or ask if you can record the appointment on your phone. You get a lot of information at that first appointment and you'll think of a lot more questions as a result.

Very quickly it will become second nature, so try not to stress in anticipation. It's a steep learning curve but you'll both do it. Have you and your wife accessed BCNA'S My Journey online tool? That will be a tremendous help for you both if you're hungry for information.

But to answer a couple of your questions, yes, the effects of chemo are cumulative, but not all of them. Generally speaking you'll be more fatigued at the end than at the start.

Exercise is very important and the most effective thing you can do to reduce the side effects. I walked almost every single day during chemo, starting with a short slow stagger up and down the street, and building up to a brisk 5kms by the end of each cycle (except the last, low bp problems and my heart beat too fast. Common on TC).

Your immune system is very low only for a few days in each cycle, the onc will tell you which. Be extra vigilant then with germs, but otherwise general caution should be sufficient. Keep friends and family with germs away, but you can't do that with your own kids, so you just do your best. I had four in school when I had chemo and I didn't get sick once.

I began seeing a dietician when I commenced chemo. She was thoroughly acquainted with cancer treatment. Broadly speaking they don't want you to gain or lose too much weight. She said 5kgs in either direction was OK. The big thing was to keep your nutrition up, and in the face of changed or lost appetite, to increase your protein intake a bit. But all the usual rules apply: lots of veg, two serves of fruit a day, lean protein, complex carbohydrates etc. Food can be a challenge because chemo can make you crave weird stuff and/or totally knock out your tastebuds. By the end of mine I could taste virtually nothing. However six weeks later it was back to normal. So, see how she goes and get your GP or oncologist to refer you to a dietician if you feel you need extra support in that area.

Like @Afraser I want to say that while a reasonable amount of anticipatory research is handy, the breadth of reactions to the same drugs is so wide, that it's better to take things as they come. Some work all the way through, others can barely get off the couch and most of us fall somewhere in between. It's grotty but it's doable. Easy to type and harder to do, but in my experience, cancer is very good at teaching us to focus on the present.

Take care, and hugs to you both. K xox

There are indeed, and we have all asked them, often all at once too!

The hardest part is accepting that there may not be clear answers and that one person’s experience may vary widely from another’s.

if you think of not having cancer, but having one kind of a very large number of types of cancer it may help. Breast cancer comes in many forms and stages, treatments vary and so reactions.

Detectable cancer may be treated by surgery, chemotherapy or radiation but there is also the issue of cancer cells in the body, not yet detectable but potentially damaging. Chemo essentially hunts out fast growing cells that may cause problems further down the line and, we hope, kills them. It’s not a subtle process and it has implications but to date it’s still an effective tool in the armoury . 

The type of chemotherapy will depend on the precise nature of the cancer and possibly on the preference of the oncologist, based on knowledge and experience. You will know much more once you start as it is very hard to predict reactions beforehand. Nausea and fatigue are common, varying in degree and I didn’t have either at all.
From my own experience over 6 years ago, one of the lasting lessons from cancer is not to anticipate too much. There are so many unknowns that you can spend a lot of time planning for or worrying about something that never happens. Taking things step by step is hard, when so much is uncertain but it does actually help. 

Cancer treatment is do-able but it can use up energy, for family as well as the person directly affected. So focus your energy as wisely and lovingly as possible, seek and accept help wherever you can and look forward, not back. Very best wishes. 

Oncologists expect a lot of questions, particularly at the firs time appointment. Most of the questions you have are usually covered in their "mini presentation" to you explaining what they recommend. 

Can answer the biggest one for you though, if cancer is no longer there how is success measured? In short - they can't. We early BC patients do chemo as a risk prevention strategy. To remove any micro cells that aren't visible on imaging but may be there. 

The diet question - will depend on how holistic the oncolgy department is. Your breast nurse is probably best place to start with that. 

Exercise - the evidence indicates as much as physically tolerable, ideally something everyday, both during and after treatment. Improves side effects of chemo, mental health and long term risk reduction. Ive not exercised maybe 6 days out last 3.5 months of chemo, doing at a minimum 3km walk with my dog, some days can run 7km no problem, others forget about it. 

There's a really good book which might help the diet/exercise/immunity stuff from a "beginner" perspective called the complete guide to breast cancer by Dr Liz O'Riordan, check your local library 

I think all your questions are reasonable and I think the oncologist will probably give you the answer to most of those questions before you even ask.