I’ve started to lose some of my hair over the last few days (how careless). I first noticed it on Tuesday, when I ran my fingers through my hair and about half a dozen strands of long hair came away (i.e., not the hairy hedgehog hedgerow that has grown back since Mr H gave me my second reverse Mohican as a Halloween present).
Since Tuesday, half a dozen or so strands have come out multiple times a day. I can’t really see in the mirror where the hair has fallen out but I’m sure it will be obvious enough very soon. Of course, parts of the hedgehog hair are likely to be coming out too but it’s not currently long enough for me to run my fingers through it or to notice (necessarily) a few strands of that shorter hair coming out.
The Specialist Nurse who saw us at the weekly clinic on Wednesday said that it’s very difficult to predict how much hair I’ll lose by the end of radiotherapy. She said, however, that it is likely to be a patch or various patches around the hedgehog hair (she didn’t use this phrase, disappointingly!) as that’s where the rays are being directed to zap the tumour. She said that it might be the case that I can cover it over with the long hair that remains (another combover) but she has made a referral for a wig in case that I feel that I need to use one.
Hair is obviously part of one’s identity, and I’m no different in that I expect the Fallout to be emotionally difficult for me from a vanity perspective. Of course, my hair is not currently in the best state it’s ever been so that should make the adjustment easier! It’s five months since I had my roots done and my hair cut by anyone other than Mr H. The roots are so long, in fact, that they can no longer be called roots; rather, I have distinctly two-tone hair. Mr C says that it’s the first time he has ever seen my natural hair colour, and you know it’s in a state when even his colour-blind eyes can tell the difference between the brown roots and the blonde ponytail!
The biggest worry that I have about the Fallout is how Jennifer and Leo will react to my changing appearance. Unfortunately, it’s going to be only one of many things in their lives that I can neither change nor protect them from fully. The combover, hats and possibly a wig might, however, protect them to some degree. Plus, kids can be extraordinarily adaptable, much more so than some adults, so I’m hopeful that continues.
Rorsch[r]ach Ink Blot Test
To mark the occasion of this being the most hair I’ll ever have again (some of the loss will be permanent), here are two photos of me earlier today:
I can see a ballerina in the pattern of where the hair isn’t. My friend, who took the photo, can see a gecko. Go on: say what you see!
Schrödinger’s Wheelchair Accessory
Hair is not the be-all and end-all. I already look different and I don’t particularly like it. I’m not happy with what the Steroids (and my lack of exercise) have done to me physically as I’ve gained a lot of weight and look bloated. I’ve not been wearing make-up recently, though, so (on reflection) maybe that’s why I don’t like the look of the lady in the mirror! I should ask her to change her ways.
The tumour and ongoing seizures have severely hampered my mobility so that, when I’m outside the house, I’m wearing my splint and, more often than not, I’m in a wheelchair. I don’t like how some people either stare at me or ignore me when I’m in my wheelchair. I didn’t realise that wheelchairs came with Attention-Seeking Beacons and Invisibility Cloaks and that I am sometimes wearing them both simultaneously. One example of the latter was a few weeks ago when I was in a shop. A woman literally stepped right into a space of no more than a foot between me and the racks of socks that I was looking at. After a minute or so, she turned, saw me waiting and said “oh, I’m really sorry, did I just step in your way there, I didn’t see you”.
I think it would have been better if, instead of apparently not seeing me (which her stated remorse suggested was true), she had deliberately stepped in front of me. I could have explained away the latter as indicative of the general rudeness displayed by some people that wouldn’t necessarily be linked to me being in a wheelchair. Instead, it’s a small insight into the lives of those using wheelchairs.
Where Did You Get That Hat?
I’ve already got a lovely selection of hand-knit hats to cover up any hair loss and keep me warm outside. Most of them have been made by my Mama but here’s the most recent addition to the collection. It’s a rather beautiful merino creation made and sent to me by a friend from university:
Thank you and hats off to you, sir, I love it!
Speaking of headwear, I mentioned to one of the radiographers yesterday that I would be intrigued to see what I look like when lying on the table in my Mask. She said that she would be happy to take a photo if I take my phone or iPad into the Room, so of course I duly did that today.
Proving once again that if you don’t ask, you don’t get….here’s a link to photos of me in The Mask. I’m not inserting the photo directly into this post as my Mam said she doesn’t want to see it. I’m imagining (and hoping) that a few of you will be weirdly fascinated like me.
As an update on the seizure and meizure front, I’ve had a few doozies in the last couple of days after going more than 120 hours with nothing more than a few flickers. They have possibly been triggered by emotional and physical tiredness. Before the latest doozies, I was feeling relatively good. I still believe that, despite the set-backs, my movement is generally better than it has been since mid-October (when I was rushed to hospital once again with the Blues and Twos when consecutive seizures wouldn’t stop).
At today’s appointment, I put the swim cap on but, before I had time to get into position, I felt some familiar flickers so I told the radiographers immediately. They encouraged me to do what I needed to do (coincidentally for them, that meant lying down where they needed me to lie down for the radiotherapy!), take my time and tell them if there was anything I needed them to do. Thankfully, the flickers never turned into a doozie and I assured them that I was happy to proceed with the imaging and zapping. Jog on, meizure.
This is the closest I’ve come so far to a Radio-seizure combo that I have worried about; it would make it interesting to put it mildly. If it happens, the radiographers have assured me that they watch me carefully during the whole procedure so would be with me in seconds should I start to flicker.
Double Trouble (Part One)
In a variation on our Hospital date theme of the last few months, Graham and I enjoyed a double date at the Freeman Hospital’s Coffee House earlier this week:
We are grateful beyond words that they didn’t have anything better to do on a day off from work than to come and meet us at the hospital while we waited for my radiotherapy and clinic appointments. It was great to see them. It was a bonus that they saved me and Graham from having yet more one-on-one conversations, topics for which we ran out of months ago!
Double Trouble (Part Two)
As ever, J and L have been as good as gold all week (except when they don’t get their own way). I enjoyed spending 45 minutes or so the other day playing with them both at the table (play-dough with both of them and sorting buttons with J).
Much of the time I’m spending with J is imaginative role-play. We’ve been going on Paw Patrol missions and also re-enacting the excitement on Christmas morning of finding our presents and realising that Santa had been. Jennifer is , however, very much into everything, including spelling and writing. She asked who wrote the Christmas card that she got from us and, when I told her it was Daddy, she went into the Dining Room to ask him why he had used only one “m” in the middle of “Mammy”. The answer was terrible handwriting, of which I too am guilty, but I’m proud of her attention to detail! That’s my girl!
As for Leo, I have enjoyed giving him his morning milk a few times this week. He is a bundle of energy and constantly walks about the house (looking for the most dangerous trouble he can find, no doubt). During his wanderings, he often pops in to see me to show me things, smile, chatter on and generally lift my spirits. He also loves sitting on the bottom step of the stairs, which I can see when I’m lying in bed. It’s lovely to see him full of beans and striding about purposefully like he owns the place
. That’s my boy!
Postcards from the Pensieve
I don’t often pro-actively explain the references in this blog, which I use mostly for my own entertainment and inspiration. As this is the third time during Squattergate that I’ve lost hair (after my two surgeries), you might (as I do) think the Post title is appropriate on a literal level, even as you look back (in vain) to find posts called Fallout and Fallout 2.*
However, I fear that today’s title might, on that level, be viewed by some as disappointingly unimaginative. Or maybe you were relieved by thinking that you didn’t have to try and figure out the meaning/reference? Or maybe you don’t give the titles and references a second thought or, quelle horreur, even register them in the first place?
In any event, today I want to explain one of the “background” meanings of the title. When I was thinking about what to write about my hair-loss, I was trying to think of a relevant title of a song, film or West Wing episode (my go-to starting points for titles and sub-titles). On the way back from radiotherapy yesterday, Graham and I were alternating between Classic fm and Smooth (as ever). We were on a roll with Smooth’s playlist until a dreary George Michael** song came on that neither of us had heard before (or, if we have, we’ve each banished it from our respective memory banks).
As we switched back over to Classic, Graham correctly identified the piece that was playing as the theme tune from Band of Brothers. He suggested that it was perhaps what I needed to download and listen to in a bid to ignore the Steroids’ Wide Awake Club morning drill.
Back to our lives pre-children, when we had what I believe (if I remember correctly) is referred to as “spare” or “leisure” time, we often used to binge-watch Box Sets at weekends during the day. One Box-Set that Graham watched was Band of Brothers. I was there physically, and I really wanted to watch it myself as I enjoyed the snippets I saw. Yet, for some reason, within five minutes of the music coming on, when the gunfire and other war sound-effects were blaring, I was off in the land of Nod.
This, in turn, reminded me of a similar phenomenon that occurred whenever Graham used to play Fallout 3 on his laptop. The sounds of gunfire coming from the game more often than not used to lead to me falling into slumber, often still holding the book I was reading!
What can I say? I love the smell of napalm in the morning and the sounds of war soothe me to sleep.
So there you go. From the loss of hair to a post-apocalyptic computer game in three easy steps. There’s some insight into the way my brain works (or doesn’t work) that you might not have foreseen (or wanted) from a seemingly bland and literal title.
*That reminds me of the alleged story behind the title of the film chronicling the insanity of Britain’s King George III. Film executives apparently feared that American audiences would not go and see “The Madness of King George III” as they would expect it to be a follow-up to two films they’d neither seen nor heard of.
**RIP George. I wasn’t a fan as such but your rendition of Somebody to Love with Queen was, in my opinion, the single best performance of the Freddie Mercury tribute concert. What more proof of your undoubted talent is needed than it being one of the only vocal performances during that concert to be compared favourably with Freddie.