Panic

[system]

I try not to post anything ever anywhere now as I’ve done this and read posts which have made my situation worse, but I am so lonely I don’t know what to do to feel any better.

I am awaiting 2nd round of chemotherapy and my hair has started coming away lots now. I struggle massively with anxiety and anxiety related conditions and I thought I’d be coping better than this, hence when I was told the cold cap may not be very effective, everyone convinced me that I should give it a miss as I would only be there longer and drag out the torment, so I didn’t, now the panic is setting in.

I feel more and more depressed as the days go on, I am terrified of the second round as if it’s not already all gone by then, the hair will go and I know, I know… it’s to ‘save you’ but at the moment, whilst falling apart, I can’t see it.

I can’t face compete baldness, if it happens, I think I’ll hide away for the next few months. I honestly feel after being so strong for so long that this is slowly stripping me away and eating into me and there is no cancer to even treat (I hope!) it is an adjuvant therapy for me, then there will be more radio and scans and then ovaries and God, it never stops.

All the time people are walking around carrying on with their lives none the wiser about what’s happening to me, all the people I see (other than the people here) get to carry on with their lives and never have a clue how this feels.

I am so scared  and I thought I’d faced my fears with my previous surgeries and previous treatments and actually managing to get my first chemotherapy session done, but I don’t think I was aware of how falling apart would feel, but everyone (everyone who’s not losing their hair because they’re not having this treatment) tells me ‘it’s just hair’ and ‘it’ll grow back’ whilst everyday it feels more and more devastating.

How do you all do it? How do you all cope? I use my hair as an anxiety relieving tool I always have since I was a child… now when I feel it, it comes away in my hand. Soon there will be nothing to feel to relief my anxieties. I can’t imagine how awful I am going to look and feel and the panic is setting in. 

[mbElizabeth]

Hi Louisa

I think we all have these feelings I lost heaps of hair 3 days after my second EC it just slid away from my scalp in the shower. Although I had planned for it by having a wig and caps and scarfes ready at hand when it happened my emotions went crazy but because my hair was long  and I knew of the mess there would be I decided to clipper and shave it off through which my husband and I cried the whole time.4 weeks later I am coming to terms with it knowing that eventually it will regrow but wow sometimes emotions do swell .So I just have to pick myself up ,put my wig on which is virtually identical to my own hair and there I am again ready to go on.

please love yourself and know that we are all going through this for the better 

and we are all here to help

[Jaybro]

Hi Louisa

The hair thing is, to some extent, a displacement isn’t it? There are so many things to feel anxious about that focusing on one thing makes it a bit easier. Hair loss is also in a way dehumanising, robbing us of something so important to our identity. Wait till you lose other body hair! Having said that, I took a practical approach. As soon as I felt that first slippage, I rang my hairdresser (in tears, the only time I’ve cried) and she came to the house and gave me a fantastic Number 6 buzzcut. It was radically different but it was still me. Then, by never brushing and only smoothing shampoo and conditioner over my scalp, I held on to most of that hair through 3 x EC and 9 x paclitaxel. I chose a wig remarkably like my own hair but wore it perhaps half a dozen times max. I treated myself to a couple of cashmere beanies in the sales and wore them doubled up outside. You can’t help but feel good in cashmere. At home, I wore a sleep cap because it felt nippy without a full head of hair and occasionally I’d wear a beanie in the daytime if it was cold.

If I have paclitaxel again (it’s my second line of treatment if/when oral chemo stops working), I’ll do the same, only this time I’ll go for a more exotic wig. I know I’m not you but I am someone who’s led a life ruled by anxiety and phobias so I do understand your feelings. This is only going to get worse. You can’t halt it, so quickly turn it to your advantage. Don’t focus on bald. Focus on what you CAN do to make things feel a bit better. It is temporary. It starts to regrow about 3 weeks after your last hero and it feels amazing - all soft, like a puppy. I was constantly stroking it and inviting my friends to do it! If you do something positive (even if it’s having a giggle at the wig-testing session and choosing a wig that feels natural so you can still fiddle with your hair for reassurance) you may then feel you’ve regained some control after feeling like breast cancer is in charge of your life now. 

If you know the hair loss is disguising a terror of chemo, tell your oncologist. Mine prescribed 2 lorazepam each time and I felt so normal and at ease with what was going on (otherwise I would have felt trapped and panicked and maybe tried to do a runner!). You could also talk to your breast care nurse and perhaps be referred for some counselling. It’s worth a try. Is there a Maggie’s near you? They will help. The fact is, this is time-limited if you’re lucky. I hate using terms like be positive and be strong because we can’t do that a lot of the time. But you can regain just a little control over your life if you think it through. I found listening to videos by Progressive Hypnosis on YouTube very helpful with the constant anxiety.

I hope you haven’t found this patronising. It’s written with the wisdom of hindsight.

Take care and be kind to yourself.

Jan x