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Help requested for brain surgery patients

Schmetterling

By Schmetterling
in Crochet for Charity

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Schmetterling Collaborator

Schmetterling

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Hi everyone!

 

I hope this doesn't come across as biased or ungrateful or whatnot, because what I'm going to write is simply my experience and something I have wanted to share for a long time but had no audience appropriate for it until now.

 

I have had 14 surgeries the last 3 of years, with several of them being complicated brain surgeries. Brain surgery is never easy, and being a young woman of 27 having my first one, it was a shock to lose my hair.

 

Not only was I bald, but I was left with more than 30 stitches running the entire backside of my head. While proud of my strength and my fight to survive, I quickly came to terms with my baldness and I would not have minded going without a cap in public, I felt it would have been inappropriate and distasteful to do so. My incision was horrific.

 

Unfortunately what should have been 1 surgery to cure became several more surgeries and of course more stitches, more staples and repeat shavings.

 

My point, you wonder?

 

I searched near and far for caps to wear. Hats such as baseball were out of the question. A large incision on the skull translates to sensitive skin. My choice was limited. I found many groups that donated their hand-made caps to cancer centers. There was only one I could find that included brain surgery patients. They were kind enough to provide me with a cap and I was incredibly grateful.

 

Such incisions as mine for my brain surgeries also means frequent washings to keep the site clean. I needed to have more than one cap so I could switch them out during washing and drying. Yes, I crochet, but I only found enough strength to make one lone cap, thanks to the pain and exhaustion involved in brain surgery and its recovery process, in addition to the debilitating pain throughout the body from my connective tissue disorder.

 

With my second brain surgery, I died twice in the recovery unit 12 hours apart. The second CPR did not go well, leaving me on a ventilator for a week, followed by months in the hospital (never once able to see my children) to learn to walk, speak, and write again. I cannot describe how thankful I was to have my 2 caps, though I longed for a couple extra since I could not do laundry in-patient and my family was hours away. I lived in my caps at the hospital, not wanting the other patients to see my incision during our group rehab activities.

 

May I please request that anyone who makes chemo caps to also please consider brain surgery patients? We are often overlooked, hurting, facing a long road to recovery that may mean years of many more surgeries, and in great need of support.

 

Please don't think me ungrateful. I am just sharing my story to let people know of this great need. I discussed this with a charity craft group and afterward contacted hospitals around the country (and a few overseas); thankfully I had multiple leads to major facilities since I moderate the most well-known neurosurgery patient forum.

 

I would be glad to share where to send caps, but also I will keep a supply of caps at my home. Since I help run such a major site for patients and caregivers, I know several people at any given time who are about to undergo their first brain surgery. I am putting a link at my blog today that anyone who wishes to receive a cap or two can contact me and I will send them some right away so they will have them in time--so if you want you can also send caps my way as well so I can have them on hand for patients in immediate need (my brain surgery blog is very well known in the neurosurgery community, it leading to being contacted by various local and national tv networks so thankfully this is a good outlet for people to seek help from).

 

Any soft yarn such as Simply Soft or chenille-type will be soothing and comfortable, even on incisions like the ones you see at the top of my blog. The softer, the better. All I did for mine was make it in the round with double crochet. It was plain and simple, looked good, andfelt even better. It also allows the stitches to have some space and still cover up the skull nicely.

 

I also wore my caps not only outside but immediately after showers because my head was painfully cold; after every brain surgery especially I have a difficult time maintaining core body temperature--very common for brain surgery patients).

 

Caps should avoid being real snug or tight-fitting the way baseball caps are. This is why I was uncomfortable in scarves. The only way I could keep them on was to tie them tightly and it just didn't feel good.

 

There are many patterns out there for knit/crochet that have sizable holes as part of the pattern; these may make a patient self-conscious since incisions and subsequent scars can be seen easily during the time hair is growing back, which can take over a year.

 

Thanks again for your time and consideration!

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Miss Crochet Community Regular

Miss Crochet

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Hallo Keesha,

How about caps in cotton? I had an operation on the base of my neck last year and the scarf my mum knitted for me nearly drove me wild - I had to wear cloth and cotton scarves because the skin was (and nearly a year later still is) so sensitive. I figure cotton might be easier to wash at high temperatures too, to rule out any risk of germs and infection? :think

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grannyannie Collaborator

grannyannie

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Hi Keesha, I'd be happy to help! As the survivor of 2 brain surgeries I understand the need all too well. The doctor's assistant was kind enough to get a cap from the cancer ward for me to wear. I was also gifted with a knitted one when I got home several weeks later. I have wanted to do something like this for so long, but have been torn between this and my survivors of abuse project. Thank you so much for starting this! Please PM me your addy and I'll get to work on some hats! :hug

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Schmetterling Collaborator

Schmetterling

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Ann,

 

Hugs to my fellow brainiac. I completely understand how it can be difficult to find the time for all the needy projects out there! I also crochet caps for the local NICU (where my daughter stayed when she was born) and wash/face cloths for the local domestic violence shelter. The neurosurgery project though is one I know doesn't get nearly as much help for though so I decided to go ahead and jump in! Thank you so much for your help!

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Cherri Explorer

Cherri

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Hi, I've never had brain surgery (which must totally suck, by the way), but I had what I call "baby's butt head" for over a year due to chemo and a bone marrow transplant. I wouldn't have had a problem going bare-headed but other people had a tendency to freak :eek. It's funny but with all the chemo caps out there, I had to make all my own. I'd like to help out and make some caps for you. :yes I'll get started on them asap. Please pm me your addy. :hug

Hugs, Cherri :manyheart

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grannyannie Collaborator

grannyannie

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LOL, Cherri! Baby butt head, lol! I didn't have a problem going without a hat most of the time, but didn't like the stares from people that were obviously uncomfortable. One of my DH's favorite pics of us together is during the time my head was shaved, lol! He had shaved his head in support, so we were two baldies together! He looked much better than I did though, lol!:hug

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Cherri Explorer

Cherri

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LOL, Cherri! Baby butt head, lol! I didn't have a problem going without a hat most of the time, but didn't like the stares from people that were obviously uncomfortable. One of my DH's favorite pics of us together is during the time my head was shaved, lol! He had shaved his head in support, so we were two baldies together! He looked much better than I did though, lol!:hug

 

Oh Ann, what a sweetie-pie hubby you have. :manyheart I don't think that ever crossed my hubby's mind (not that he's not a sweetie-pie too), LOL! :lol

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Titus2woman Community Regular

Titus2woman

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I am literally in tears. The people of the 'Ville are so amazing in all they have been through and give and contribute as well. I am inspired and encouraged! and I hope to give~even I can only muster three or four items a year.... (((((HUGS))))) sandi

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Schmetterling Collaborator

Schmetterling

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Thank you! DH called me tennis ball head most of time, sheesh.

 

Actually I wouldn't have minded going out without caps either except for the nasty incisions and staples and sutures everywhere. There are pics at the top of my blog from various surgeries.

 

I will forward my address, Cherri. Thanks so much!

 

Best wishes to you!

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basjordan Apprentice

basjordan

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This may take a while. I am teaching two darling girls to crochet. They are willing to contribute. The going may be slow: they started working on their first caps before I heard about this, but they are willing to make caps for your group. And I'm so proud, as if they were my own girls! Oh, I'll be throwing some I make in, too. So if you'd forward your addy to me, I'll eventually get something out to you! I bought yarn today. Bad for stashbusting, but oh, so much fun trying to find the softest yarn out there. :manyheart

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truckin Patty Explorer

truckin Patty

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HI I will gladly help, I live in a semi truck for 4-6 weeks at a time so I wouldn't get to mail them until I get home. Post Offices don't have parking for a 75 foot rig:eek. Just pm me your addy, and I will do my best to get them to you on a timely bases.:lol

Patty:hug

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Schmetterling Collaborator

Schmetterling

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Hi there cluless,

 

The patterns are really up to you. :) There are a lot of designs at the headhuggers website and at bev's country cottage for some ideas. I am trying to keep some on hand that are solids, some with stripes, some more bold or with poms for the toddlers and kids, etc. It's pretty open since it just depends on what a person likes.

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