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This Black Woman’s Guide to Cancer – My Hair Pt.4

6th May 2021Leave a Comment

Quick update since my last post. I’ve been fully exploring my available wig options on the NHS and it has been illuminating and funny. My oncology team referred me to Raoul Wigmakers based in Paddington and I was given an initial Zoom virtual consultation appointment. It was managed by a lovely consultant called ‘C’ and ahead of the call she asked me to send a couple of images of what my hair looked like prior to the hair loss. I duly obliged and sent her my cutest shots! The online appointment was for her to show me the wig styles she’d selected and that would be within the NHS price range of £74.15 for a synthetic wig. I asked my bestie to join as my objective third party.

Now bear in mind, i’ve been natural for a long time and even on the rare occasions that i’ve worn synthetic hair, it’s always been a braid style or a textured crochet look. I don’t really go for the long, straight and/or wavy look, not my preferred style although it looks cute on other people and the consultant herself was wearing a cute ombre ‘Beyonce’ number. This does mean her options were a lot narrower and I guess she did the best she could within the parameters given…

So here’s the line-up:

The ‘Idris‘

It immediately reminded me of one of my nanny’s wigs that i used to take care of when i was growing up. She used to spray it with Ultrasheen!! Think Idris in ‘The Long Run’

The Whitney

Think circa 1980 something and you get the drift. I’m pretty sure (lockdown not withstanding) no-one’s going to want to dance with me in this:

The Pookie perm

Think New Jack City and me looking like Pookie’s mother doing a home jheri curl in the 80’s while high on crack! It was NOT great!

I can’t say I was very impressed and i have no poker face but It was good for a giggle. The entire online session was scheduled for an hour and was over within the first fifteen minutes with an agreement to set another (covid-safe) in-person appointment.

The salon appointment didn’t yield anything more favourable although Raoul’s did try their best given the NHS budget limitations. The salon itself is lovely and set up to respect the client’s privacy with individual private consultancy rooms. I can imagine that outside Covid you would feel completely pampered with your own individual room, consultant and tea/coffee on order. I tried on several pieces, leaning towards shorter pixie style cuts but eventually deciding to sleep on it before making any final decisions. The key takeaway for me though: there are very few options for women such as myself who want an afro-textured wig.

So having slept on it, I won’t be going with an NHS wig. The options offered are just too limited. I think it’s time for the NHS to review what their suppliers are offering (within the prescription budget) as it relates to meeting the needs and style requirements of black women today. The afro-textured styles I saw were firmly stuck in the 70’s-80s! Thank goodness for the internet if I do go down the wig route then I’ll consider the styles from some of the following sites (mostly U.S. based but providing international shipping):

Natural Girl Wigs – A Black-owned business based out of Lagos and Texas. They categorise their wigs by hair type (3B-4C if you are into the hair typing) and there’s even a fun quiz you can take to find your perfect hair extension based on it. Prices range from £40-£240
Her Given Hair – U.S./China-based entity. It gets a mention as it has by far the largest selection and variety of afro-textured wigs i’ve encountered on my search to date; lots of YT reviews and most with real natural hair. HOWEVER there’s a pretty hefty price tag too (several hundreds of pounds) and I would be nervous to spend that kind of money without being able to see the quality of the unit i’m buying first.
Radswan – A UK-based black-owned business (yeah!). It’s a synthetics only line and currently the selection is small with only four different styles (‘Radshapes‘) on offer but i’m seriously interested in this line and excited to see where they take this. The shapes of the units are modern and fresh and importantly, affordable with wigs costing no more than £160. I wonder if they’ve thought about a collaboration with the NHS??

How have you addressed your wig needs? Are there additional suppliers out there that are worthy of a mention? Please feel free to share your experiences!

This Black Woman’s Guide to Cancer – My Hair Pt.3

22nd Mar 2021Leave a Comment

Are wigs an option?

I feel like an afterthought. I mentioned a couple of posts ago that my oncology team recommended that I check out MacMillan charity as they provide additional information and support around wig measuring services for cancer patients. Since my diagnosis in 2018 I’ve dipped in and out of their website as it is my premier resource for practical information and support for patients living with cancer. Over the years I’ve come to recognise that as a charity it has been their ability to identify the emotional impact of this need and focus on this as a necessary part of [cancer] life management. In 2019 me and my two besties completed a London Winter Walk and raised over £1500 for the charity we all feel passionately about.

So what resources are available for the black woman with natural hair? The site provides a wealth of general information about the different types of wigs available and options for funding including that you can get a wig on the NHS (subject to prescription charges but more on that later!) and there is a VAT free option for all cancer patients. I wasn’t aware of any of this before so this is good to know! There’s a short video where a patient goes into a salon called TrendCo to purchase a wig. She selects one and then Trevor Sorbie (famous hairdresser) styles it for her so it fits her face. This was great but in all of the video scenes of the 100s of wigs available none of them looked as if they were styled or created for black women who don’t want to wear a straight textured wig. Which got me thinking – where would I go to get the equivalent service? I continued on Macmillan to find out!

Macmillan’s recommendation:

Wigs if you are black or from an ethnic minority group
You may need to contact a specialist wig supplier to find a suitable wig. There are companies that work with the NHS to do this. Speak to your cancer nurse or doctor for more information. You can also contact Cancer Black Care for support and advice.
macmillan.org.uk

I checked out the Cancer Black Care site for more information and I’m a little surprised this is a Macmillan recommendation or reference. The site is lightweight compared to it’s own and the practical advice given is generic. There certainly isn’t a snazzy video of black patient attending a wig referral appointment and being treated to a cut by a celebrity black hairdresser. It’s a little disappointing but sadly unsurprising. I could go into the huge funding disparity that exists between CBC and Macmillan (we’re talking multi-millions, i checked!); the potential inadequacy of fundraising efforts of the former; how this gap has the potential to impact the quality of services and advice on offer to ethnic minority patients who need charitable support; why my expectations [needs] of a charity the size of the latter should be met within it’s existing framework; what more could be done to ensure that it is inclusive of these needs rather than referencing (-read palming off to) another charity; or in the alternative that funding is spread more evenly to address this gap, but I think I’ll save that for a separate post!! It did peak my desire to research other organisations out there that have a ethnic minority focus. I will add a list of resources as an update to this post for anyone that wants a list of organisations and the information they have.

In the interim, my oncology team has referred me to a wigmaker in Paddington. I’ve been told my prescription will cost £74.15. On further investigation I discovered on the NHS website that I was quoted only for a synthetic wig but the NHS does fund human hair wigs too. Current NHS prescription charges are:

stock modacrylic wig – £74.15
partial human hair wig – £196.40
full bespoke human hair wig – £287.20

I will have to ask if the other two options are open to me. I’m looking forward to getting myself fitted for my very first wig. I’m quite happy just to rock my buzz cut but a lady should always have options!

Good to Know:

If you’re based in the UK – cancer patients on the NHS can be referred to wig specialists, speak to your oncology team
NHS wig prescriptions require you to pay a surcharge depending on wig choice (synthetic/human) but this can be free if you are on a low income
TrendCo – the wig salon featured in the Macmillan video does an extensive line of wigs and hair services in general (but note lack of variety for ethnically diverse styles)

What have your experiences been engaging the NHS for their wig services?

Thanks to everyone for all your support. Feel free to share, ask questions – Let’s take back control, stay healthy and blessed together!

This Black Woman’s Guide to Cancer – My Hair Pt.2

14th Mar 202114th Mar 2021Leave a Comment

The road to recovery….

For the past couple of days I’ve been dodging mirrors, satin hat firmly fixed in place. Glamour hasn’t been my priority (and generally isn’t on school runs). I thought about washing & DCing my hair before my cut then realised it would be a waste of product on hair that was so dead it would have taken a spiritual intervention to revive it. You saw the pictures, i’m not exaggerating!

Just to prove i’m not crazy and I hadn’t misinterpreted anything, I dug around in my email and found the information booklet supplied by my oncology team. It’s 14 pages so fairly extensive and provides a list of Q&As. On side effects:

Hmm… I don’t think very many people would describe the loss I experienced as ‘mild’ or ‘small’. Since my initial post I’ve shared the pictures of my excessive loss with my oncology team and i’m waiting for them to get back to me. I had the expectation of ‘mild’ being extra shedding at wash time and during the detangling process. I certainly didn’t expect to look as if I’d lost 65% of my hair!

Questions – I had several here are some:

What hair type was being referred to when describing this side effect?
Did the reporting of this side effect factor in the impact of the treatment on afro hair which is far more fragile than caucasian or other hair types?
What does ‘mild’ or ‘small’ look like?
What type of loss was experienced by the other 35% (still a sizeable portion) and why is this not referenced?
At what point in the treatment cycle does shedding occur?

My expectation was that the list of side effects are equally applicable to me as they would be to anyone else reading them but sadly this wasn’t the case. Maybe I fell into the 35% but without further information I can’t be sure. In my mind though the direct comparison between hair loss in radiotherapy (my treatment) versus chemo hair loss is what was particularly misleading. When chunks of hair came away in my hands i certainly did not feel the distinction!!

What I do know (and this isn’t the post to go into this in any great detail) is that the medical profession’s provision of race-blind generic descriptions of side effects isn’t helpful and can cause more harm than good for the ethnicity not catered for. (Think meningitis test and rolling a glass over the skin. The previous guidance would never have worked on most brown tones. It has only just been rectified here in the UK in the past couple of years). In my case i’ve had mismanaged expectations and undue trauma as a result. Had the side effects on hair been more accurate, I could have taken better preventative measures and certainly made different protective styling choices to prevent any potential for it to aggravate the side effects further.

It’s hard enough dealing with the uncertainty that comes with a cancer diagnosis without adding the stress of realising that your ethnicity may not be accurately factored in. I’ve been left a lot more unsure of the rest of my treatment plan than I was before starting it. I feel like i’m being asked to take on ‘blind faith’ and trust that the treatments (and any identified side effects) are applicable to me. Some good has come out of it though… it got me started writing this blog!

So what have I done about it? Sis came over with her trusty clippers Friday night and she hooked me up! I had a glass of Prosecco to calm the nerves and she went to work getting rid of the dead hair! Here is the end result:

The top is still patchy but less noticeable at this length. I can still see where my ‘thin’ spots are but I don’t think the ‘untrained’ eye would notice!

Embracing the buzz cut after washing & conditioning

Baby sis hooked me up!

I’m really happy with it and i’m hoping that the regrowth will be healthy and even and I won’t have any permanent alopecia spots.

Top tips for rocking your buzz cut:

Check out the Pinterest boards! – There are SO many variations on the buzz cut theme. Etched in lines, parts, patterns etc
Visit your barber/hairdresser – If you aren’t lucky enough to have a bomb ass sister then this is a must. Clippers can do some damage in inexperienced hands. My sis took her time and went down setting by setting until I was happy with how low the cut was. I trusted her because she’d been doing her own head for years now. Plus she’s super-picky/pedantic (love you sis!) which is is what you need for this type of exercise!
Back away from the dye – I was tempted to reach for a box but was reliably informed that if you’re actively receiving treatment then you’re advised against any permanent hair colouring as it could cause adverse reactions. I wonder if the same applies to temporary hair colour gel???
Scalp Care – Conditioning is still needed! My hair was cut dirty, so afterwards I washed and conditioned, applied leave – in and moisturised as normal. I find that my scalp is itchy (with no visible flaking). I don’t know if this is treatment related but now i’m back to virgin root growth it’s the ideal opportunity to nurture it back to health from the scalp up!
Wigs: i’m going to tackle this in a separate post but now’s the time to experiment!
Smile! – Your new cut will bring attention to your face so a smile will compliment it. I’m grinning because my wash and go will really be that and I can have dry hair in under 30 minutes. Plus I also have a resting B-face so I’m also accessorising with some make-up! 🙂

It’s been a tough week but I feel like i’m ending it on a high because I have a degree of control back. Cutting my hair has given me some of that.

If you are out there on your cancer journey, what has been your hair experience so far?

Thanks to everyone for all your support. Feel free to share, ask questions – Let’s take back control, stay healthy and blessed together!

This Black Woman’s Guide to Cancer – My hair Pt. 1

10th Mar 202114th Mar 20217 Comments

Not a standard introduction….Cancer and my ‘fro

cancer sucks ass! It’s not enough that one day you wake up and suddenly your world is blown apart by the diagnosis from hell. But here it comes to fuck with your ‘fro!! I mean… nah!! I’m really not feeling this. If you’re anything like me you jump on the ‘net to research. But listen, Google is not your friend. Google cannot help you. Google will send you down so many Alice holes that you will pull your own hair out long before you get to any meaningful answers as to what is a ‘fro-normal’ (or not) response to the treatment you are receiving. (chemo; PRRT or whatever else you’re likely to be subjected to).

There is nothing out there, I mean it – NOTHING! Unless i’ve suddenly lost all of my research skills, I couldn’t find anything on the many forums dedicated to understanding how to deal and manage living with cancer. N A D A!

I tried various search terms too: African – American (i’m Black British!); Black, etc. It didn’t matter what I used I was served up so few results I wondered if Google was broken! I can’t find info? Not me research queen??! Do I need to use Yahoo instead? Do AOL and Lycos still exist? (they don’t!)

So that’s why i’ve started this blog – to share my journey with you as I stand up to cancer and kick it’s ass, I realise that this journey is also about sharing. I need to be the solution I seek. I refuse to believe i’m the only black woman out here who has cancer, who has questions that she couldn’t find answers for! So i’m starting this guide to share what I learn along the way. This first one is hair, cos that’s what i’m currently battling with, but there will be other parts too. I’m hoping that this encourages others to share their stories. We’re not alone but we don’t know it unless we talk.

Today – I took the rest of my hair out of the faux locs crochet style i installed ahead of my first round of PRRT in January. To say what I discovered is traumatising is an understatement. I was (am) scared, horrified and frankly angry! I don’t want my girls to see me like this because i don’t want them to freak out either. This is very far from the ‘may cause some shedding’ I was told about. Let me just show you guys:

This is what my hair looked like at Christmas, pre-install:

This is what my hair looked like after my install (self-installation). Totally feeling myself in this pic, i’m celebrating my 49th birthday (lockdown style!) 2 weeks after my initial round of PRRT:

This is what I ‘discovered’ on removal of my faux locs….

As you can see from the above pics, my once dense mane has been reduced to almost nothing as my hair came out in clumps. It looks like I have some alopecia spots now too. I’ve lost more than half of the natural density of my hair.

So what am I going to do about it?? Rock a number two of course! My sister SJ will be coming over to fade, trim and shape me up. I’ll share the photos once i’m done. I think that’s been my saving grace in all of this and what has stopped me (once my initial tears stopped) from completely losing the plot: i’ve gone super short with my hair before, several times, and quite like it, I can do it again.

So here are my top tips to consider if you are suffering from cancer and are having PRRT treatment (or similar):

Speak to your oncologist team – Make sure they explain in detail all of the possible side effects of the treatment and don’t be afraid to ask if they have any evidence of how or what impact it may have on your particular physiology as a black woman. They might not have the answer (mine didn’t) but at least you’ve asked!
Mind your diet – I’m still figuring out what does and doesn’t work for me in this regard. The type of cancer i have (i’ll go into this in another post) means that it’s not as straight forward as you might think! Still the basics should apply: plenty of water and vitamins to bolster the immune system
Know your hair!– only you know your hair – how it should behave vs. how it is behaving. Any changes you do see? Check if the medication you’re taking indicates if there are any side effects related to hair loss/shedding/thinning and if there are – speak to your medical team if it feels more than ‘normal’. (Mind you watch what they consider to be ‘some’ and ‘normal’ because without any clarification of what this looks like you will have no expectation of what to look out for)
Seriously consider whether or not to put any kind of install braids in – (crochet or otherwise). It’s about tension. I did it myself deliberately as i’m amateur so i knew I wouldn’t be putting them in too tightly. If I had known about the extent of my hair loss I would have left well alone and just rolled with my afro. i thought I was doing my hair a favour and giving it a rest….
Consider a hair cut – Maybe it’s time to rock that cute tapered fro you have tons of saved Pinterest pics of! For me, i’m going to have to go short so there’s just no excuse not to still look cute! My nurse also told me that M acmillan do wig services. I’ve got a big head so I don’t know about that one! LOL I won’t take it off the table though. On a quick review they highlight that you may need to contact a specialist wig supplier in relation to black and ethnic hair! They’ve also suggested reaching out to Cancer Black Care for support and advice but their site didn’t seem particularly fruitful. Maybe worthy of a follow-up with them for a part two maybe?
Wraps are your friend! – I love wraps anyway and i’ve bought some of my favourites from The Wrap life so for me these are going to be a staple, alongside turbans
Be kind to yourself – Take the time to cry it OUT! Get your peoples together (shout, stomp, swear and share all the awkward ugly photos) with them! That’s one of the kindest things you will do – is to let it all out. Once you’ve done that (hopefully) you can make a plan of how you’re going to tackle this hurdle

What have your experiences been on your cancer journey? What did I miss? I’d love to hear your stories and any tips and tricks I need to know. Please feel free to comment and/or reach out if you have any questions. I’d love to hear them!

Let’s stay blessed..together!