Should say bit of advice needed. I just got off the phone with my sister, and have been shaken to the core.
She was recently diagnosed with an aggressive form of breast cancer and has just gone on a fairly complicated, twenty-week regimen of chemotherapy. To say the least, she doesn’t seem to be taking it well, from an emotional standpoint. While she doesn’t seem to be experiencing some of the more serious physical effects such as nausea, she did complain profusely about feeling that she was in a mental fog, and was getting highly emotional about turning down some contract work that she doesn’t feel up to doing. She was so distraught, right from the start of the call, that she could barely speak, and when she did speak, it was alternately through tears and with a shocking degree of hostility.
After about ten minutes of horribly awkward attempted conversation, I rang off, more or less because I felt that no matter what I said it was going to be taken badly.
I’m thinking I’d better check in with the guy she’s living with, as he’s taking the brunt of all this. Me, I’m 1500 miles away.
Make no mistake, she’s got a tough fight ahead of her and all I care about is that she get better, but if things are this bad this early into treatment, I don’t know how she’s going to get though it. Sorry, I’ve been somewhat blindsided and am at a loss as to how to deal with this appropriately. Any suggestions or useful personal experiences welcome.
No nausea is not surprising. When my husband was diagnosed, they (at the medical oncologist’s office) told us that nausea means they’re not doing their job right of managing the side effects.
On the emotional side, at the beginning, there’s going to be the whole A to Z of feelings mixed with quite a few doctor visits happening at a panic-inducing pace.
And yes, chemobrain is a real and unfortunate effect that can appear as anything from a bit of temporary scatter-brain to permanent difficulty in learning and remembering things.
There is a lot of information on emotional and psychological issues in cancer diagnosis and treatment. I think there may be stages, kinda like the Kubler-Ross stages of dying (denial, anger, bargaining, depression, acceptance- which don’t have to happen in that order).
Often, the new diagnosis comes with an intense medical regimen which can be very overwhelming. Add the physical discomfort to the mix and, well, that’s a lot to deal with.
In times of crisis, people will compensate (or decompensate) as their ability to navigate problems is put to the test. Hopefully, friends and family will come to your sister’s support and not fragment or fall apart under the strain.
Her early reaction is probably at it’s worst right now while she deals with both the shock of the diagnosis, the complicated future treatment, and her fears about her ability to function and work.
Please do call again even though it is difficult. Sometimes people feel abandoned when their friends and family supports fracture and run away.
Thanks for comments so far, and if something I said in my OP came off as insenstive or self-centered to anyone (as seems to be the case), well, that’s part of why I’m asking for help in trying to be a more supportive person.
I assure all that I have no intention of ‘running away’ from this situation. I just don’t want to make it worse though a recognized difficulty with (let’s face it) understanding or dealing with extreme emotions.
Yay for the hostility! (Not at you, but that she needs it.) She needs to be mad as hell to get through this shit and she needs a “kick ass” attitude until it hopefully becomes a slow-burn, cold-focused hatred toward this thing until she’s lasered it down to nothingness. Right now, though, her anger is scatter-shot. You can help her direct it toward That Which Must Be Annihilated.
YMMV but I would call her and yell “I love you! I’m here for you! Call me anytime!” and mean it.
Try to listen more than saying anything. Do call the the guy she’s living with and support him too. My sister was treated for cancer with chemo and when she announced that she was going to be, she sent out an email to ‘everyone’ with all the things she didn’t want to hear about. I wasn’t there, but she was lucky to have our mum following her around to all the appointments, so I got more reports from our mum than my sister herself. Sometimes my mum would say ‘she had a very low day’.
It’s definintely a roller-coaster. And as others have said, from the initial diagnosis through surgery and starting either chemo or radiation the pace is breakneck. New knowledge (all of it unwanted), new problems, new regimens daily. You barely have time to process the events themselves, much less the facts, much much less the emotional / psychological import of it all.
Then suddenly the pace slackens. You get chemo’ed once every 3 weeks, with nothing to do for the intervening 20 days but feel like shit and contemplate your imminent demise or at best your probably much-shortened “golden” years.
That’s when the opportunity to process all this load hits. And it hits hard. Add some insomnia, chemo brain, and, despite good medicine’s best efforts to manage side effects, some side effects none good, and you have a recipe for raging, crying, abject paralysis, and an overwhelming desire to run away. All at once.
Probably the most useful thing anyone can tell the patient during this process is that whatever they’re doing / saying to / at you is OK and valid and that you’ll be there no matter what. Ultimately they’re grieving for the unburdened life they had before and have now lost forever. And they need to do it quickly.
Somebody other than the patient needs to be her full-time advocate with the medical system. The system means well, but it can be so fragmented that a lot of incompetence comes bubbling out of the cracks between the individually competent specialties. And that’s if you’ve got good insurance and a good team. If not it can be much, much worse.
The OP may not be the obvious person for that role. But he ought to ensure there is somebody capable in that role. Or dig in and be part of that role himself. It takes a team to win this game. Even if winning eventually turns out to only be losing less badly.
This “guy she’s living with” - is this a husband, long-term boyfriend or just a hookup du jour? You make it sound like they’re not married, so there’s certainly a chance that he may flee the situation. Becoming someone’s caretaker through a long treatment regimen can be a severe test of character.
They’re going to need just as much support as your sister, especially on the “low days” when she’s not able to do anything but try to sleep off the effects of that morning’s chemo infusion, or cry at the slightest provocation with thoughts of how she’s not going to make it, she’s going to be ugly if surgery is needed, she’s sick and tired of being sick and tired and just wants to give it all up.
Is there someone physically close to them who can pop over to help with housework and errands? This is one of those times where you need someone to say “Let me know if you need anything. And I mean anything and any time” and they are able and freely willing to run out to find pistachio ice cream at 2 AM because that’s the only thing that’s going to soothe her emotions.
Well, husband in all but name. They’ve been together for more than a decade. He’s a very level-headed guy, and I’m fairly sure he won’t be going anywhere.
Not really. Nearest relative is another brother who is about 45 min away from their place and who has emotional issues of his own. I’m sure he’ll help somewhat but it’s likely to be very unpredictable and spotty.
I’m mentally and physically prepared to go there if and when needed, but as I said, it’s a 1500-mile trip one-way and time will be limited as I basically have only a total of three weeks of vacation time I can use over the entire year. FMLA leave, unfortunately, is only valid for spouses, parents or children, not siblings.
Breast cancer survivor here (eight years with cancer free boobies!!)
Treatments have advanced HUGELY. Chemo is no longer the debilitating treatment. I had no vomiting and just one bout of queasiness one morning because I didn’t take my Compazine fast enough. Yes, she will lose her hair. She won’t have to shave, which is nice, but tell her she’ll also lose her nose hair. I developed a chronic cough toward the end of my chemo because I lost my nose hair. They don’t tell you that. I opted to forgo a wig and just wear kick ass hats.
I also had chemo brain. For me, it was like short term memory loss. There were days where I had no appetite…I honestly forgot to eat because I wasn’t hungry.
I know this is scary for her and for you. By all means, if you have the time, go see her. Spoil her, make her dinner, even if it’s just a chocolate peanut butter smoothie. Sit with her when she cries. Rent her a stupid movie you can laugh at.
If she hasn’t already, she needs to see her dentist. Chemo can play hell on the teeth and her dentist can help her with that.
I hope all goes well with the treatment. Let me know if you have any other questions.
If a food/smell makes her sick,get it out of there! I still can’t abide cumin… I lost the ability to crochet… some days I couldn’t read! Now,6 years later,some things still haven’t came back…
But mostly there’s the knowledge that,yes,you will die. Maybe not from this,but death is coming.
Here’s another bad thing to get mentally prepared for – when the bills come in, they may (probably WILL) be incorrect.
Example: my surgeon sent what he excised to the pathologist. The pathologist’s work generated six line items of claims.
The insurance paid three, and denied the other three as not pre-authorized.
As I keep telling the many customer service reps I deal with, “Treating cancer is difficult, complex, ever-changing. Processing Accounts Payable is pretty much settled science.”
I got huge bleeding hangnails on every nail I have. Lost my fingerprints. My tears were so caustic my eyelids blistered. The whole body hurts. Women,attractive women, are not used to men shuddering when they look at them. She won’t be able to work,because she won’t be able to hold a thought (all these things happened to me… I am projecting)