Forum Discussion
Cold Cap Experience
You can see I'm back with a vengeance... I was offered cold caps at the same place I would be having the chemo, at no extra cost or runaround so I decided to give it a go if I could tolerate it. I'm not hung up on losing my hair but know that it would make everything a little bit gentler for the kids (and partner) and if I could manage it and the extra time it takes, no problems. The day of the disastrous non-chemo, about the only thing that wasn't a problem was the cold cap - whether it wasn't on really firmly or I was just so traumatised from the preceding 6 hours, who knows... Jump 3 days to second try at chemo and I found the cap only just bearable. I've still got a couple of weeks to see if it has had the desired effect but I really hate having the greasy feeling of the conditioner-washed hair hanging around my face and I look like one of the lesser-groomed side characters on Midsomer Murders. So, I'm starting to assemble fors and againsts.
I know from reading everyone's posts that when their hair falls out and grows back, the texture, colour and spread can be quite different from how it was before.
I'm sure that even with cold caps (and I know even if successful there's likely to be thinning) there will be changes to the hair. Of those of you who have used them, how would you compare your hair to before, immediately after chemo course, and further down the track?
I know from reading everyone's posts that when their hair falls out and grows back, the texture, colour and spread can be quite different from how it was before.
I'm sure that even with cold caps (and I know even if successful there's likely to be thinning) there will be changes to the hair. Of those of you who have used them, how would you compare your hair to before, immediately after chemo course, and further down the track?
181 Replies
- I think you get to say you're a survivor when you have your surgery to get rid of it (but someone might set us straight). However, I'm hoping to say I'm a 30 year survivor one day. Only 29 year and 10 months to go. That is, if the chemo doesn't kill me first.
- @sister Telling my nephew and niece was probably the most horrible thing I've ever had to do. I can barely bring myself to think about it.
There are no words to describe what it's like to have your sobbing nine year old niece clutch at you, wailing "I miss Mum", when you've just been diagnosed with the same disease. Almost nightly for two months.
I am fortunate, my prognosis is good. But it doesn't change the fact that my circumstances are difficult. I think I have survivor guilt. On top of everything else. And when is it we get to say we've survived BC? The five year mark? - Geeze I think we might @sister...!
I think, at times, the whole site is about living with stress and letting it go @sister
Regarding counselling, maybe think of it as respite rather than cure.
I don't expect That Poor Woman to fix me. What's happening now is very different from being treated my long standing illness, depression. That's a whole different kettle of fish which can require some pretty robust interventions at times. I've learned when I need to get back on the meds, but I also understand that I'm never going to be a little ray of sunshine and that is OK. It's who I am, and I only need to put the chemical brakes on when I start heading downhill fast.
The counselling aspect is more about having a safe place where you can learn some tricks for dealing with the sort of stress you are coping with right now. For me, it's been good to recognize when I am reacting to a situation in a way that is not helpful for my own wellbeing, and why. It's also very good to be able to dump everything on someone who I consider capable of enduring the onslaught. I will say things to her that I would never bring up on this site, it would be just too distressing for others.
Yes, finding a 'garbage bin' that you get along with can be difficult, but once you decide exactly what you want from that individual, it gets easier. They don't have to be your friend, they just need to be removed from your normal circle so what ever you say to them is not going to come outside their office, unless you want it to.
Back to the cold caps, that's fantastic that Orange is getting the caps. Everyone should have the choice. It's horrible to watch those who want that option struggling to find a way that they can access them. One less obstacle for those in the central west.
- Back to cold caps! - heard on the local news this morning that Orange oncology at Orange Hospital will soon offer cold caps on a trial basis.
- Hi @kmakm - I've been up since 4am, back to bed at 10:30am and up again at 11:30am - get where you're coming from!
I'm hard to overstep with... all body hair intact as well - just seems to have slowed down to a crawl. While I'm pleased that the eyebrows are there, disinterested in the pubes, I'd quite like the rest of the body hair to fall out. I haven't been able to shave under one arm since before Christmas!
My sister was 10 years older than me and always had some issues but they got serious around 15. She was bipolar - manic/depressive, or whatever label they like to use now. She was very bright, charming and while not vindictive, could be extremely manipulative to get what she wanted and Mum couldn't refuse her anything. Diagnosed with breast cancer at 32 and died at 45. Strangely enough, when her physical health was an issue, the mental health problems seemed to take a back seat (and I mean that seriously, not that there was any pretence involved). I lost my Dad when I was 13 and then lost my sister and Mum within 12 months of each other so I know what you mean about losing your childhood memories and grieving for it - for me there is no-one left to remember "our" family.
And I wonder if part of my reluctance to confide in a psych person stems from my sister. I went along to one of her appointments when I was about 16. Even then, I knew her psych was a dodgy as hell. He was struck off a few years later.
It must be so hard for you with your sister's kids, trying to give them stability and then having to tell them and yours about the cancer. My kids never got to meet my sister but they've always known that was due to breast cancer so that was really hard when we had to tell them.
I wonder if we need a group for "living with stress and letting it go"? The problem is that no-one would want to take on the task of managing it!! - Hey @sister, don't answer if I'm overstepping, but how are the pubes?! Mine started descending Chemo 1, Day 13. No cold cap down there...! On the silver lining side, armpit & leg hair is growing monumentally slowly. Shaved minute bristles only twice this year!
I think we have quite a bit in common. My sister had enormous mental health problems from 15 years old until she died from BC at 47. She shaped and damaged our family beyond compare. She had eating disorders, was highly emotionally manipulative, never treated her lifelong depression, was often deeply vindictive, the cleverest person I've ever known, completely unable to maintain relationships and conduct an independent adult life. I too often held her at arm's length, to preserve my own mental health and in order to care for my own family. She was only two years younger than me. My other sister is six years younger than me, so when my middle sister died she took with her all the memories of my childhood. I grieved the loss of my childhood sister a long time ago, but now that she is truly gone, it is a complex grief.
But how to deal with it with my two kids, her two kids (the youngest of whom is deeply traumatised, highly emotional and very challenging. Poor little dot wouldn't remember a time her mother wasn't sick or dying, and then her next primary caregiver comes down with the same illness 17 mos later? Telling them I had breast cancer was probably the most dreadful moment of my life), my father-in-law, my beloved hard working husband and now my own breast cancer? I've got some heavy duty mental work to do. I hope my psych can help. I have to find myself again. @Afraser you're right, cancer churns up a lot of stuff indeed.
Geeze sorry for the unhinged rant womyn. Woke at 3.45am and have not been able to sleep since. After 7am now... - Did you notice what I did? Talked too much and then tried to deflect and withdraw... I've got to work on that. I am going to formulate that communication plan @Zoffiel I think there's a couple of low-cost/free options open to me. I saw someone after the bushfires here a few years ago (the whole family did) and while she was very nice (and identified me as the major concern as I was trying to keep the rest of the family going), I never felt that I could really be open with her so I may have to do some shopping around. I need someone I can relate to but can call me on the closing up bs that I am wont to do.
And you're absolutely right, @Afraser - I'm sure that the cancer just churns everything up. I've been sitting on a time bomb of stress for so many years. And look how that's turned out for me.
@kmakm You can just "get on with it" and still be amazing! Unfortunately, being amazing has it's price, doesn't it? I hope you can work things out with your mum and sister - families are the best and the worst. But, you know, if all you can do is have a workable relationship, leave it at that. You've got too much else on your plate. I loved my sister dearly but, due to things other than the breast cancer she had (mental health issues that pre-dated the cancer), I often had to keep the relationship at arm's length for my own sanity and my Mum's welfare.
And this all started with a question about cold caps! Day 14 and the hair is still on but I still look like a poorly groomed dog-breeder in a murder series (can you tell I'm a cat person?)! Venting is good, @sister.
Sometimes it takes a while to figure out exactly how you feel, then it takes (for someone like me) a bit more time to formulate the communication plan. If I just blurt, all sorts of hinky stuff happens. So, I need to get it off my chest in a non-threatening space. Either here or in That Poor Woman's office works for me.
Which sounds a bit contrived, but we all have to get through this as best we can.
Like your Mum, @kmakm , my mother can be a bit of a... hmm, the term tartar comes to mind. Also 83, she is very selective about what she choses to do or how she responds to requests for support. Or requests that she keeps my confidences and does not involve her extensive social circle in my personal business. She can oscillate from being a vindictive old trout to being almost childlike in her behavior to being the best person I know. No, she's not impaired. It just depends on the day, her audience and the amount of wine she has consumed. Yeah, I know, apple, tree, far, much?
- I had nowhere near the personal issues you are carrying , just a few long term side effects that made me wonder what I was turning into, and I found counseling (a short period of) very effective. Yes, you do need the right counselor, and you do need to feel he/she is focused on what you need/are doing. Mine honed in immediately that the problem wasn't cancer (or even the side effects) but the image of normal I was trying to get back to - crazy abnormality! Cancer churns up a lot of stuff - so even the most competent and resilient person needs a bit of a pilot guide at times. Best wishes.
