Hair

Hair. It’s a funny thing, isn’t it?  I guess for most of us – especially women – part of our identity is our hair.  I’ve always hated my hair, often we hate what we have.  Curly hair? Wish it was straight.  Straight hair – oh, you’re so lucky yours is curly……..sound familiar?  My hair is curly.  The bane of my life.  I have fought against it, and tried to embrace it, but have always had a love/hate relationship with it. 

Years ago there was an actress called Persis Khambatta in Star Trek.  She had shaved her head for the role and was stunningly gorgeous.  I had thought that if I knew I’d look good bald, I’d shave my head and never have hair again.  Turns out I look like Uncle Fester.  This is not a good look.  On a good day, I look like Squidward.  Still not a prizewinner.

I knew when I started chemo that my hair would fall out, and I resigned myself to this.  I knew I would not get on with a wig.  I didn’t feel that a cold cap was something I wanted to try.  And so, my hair fell out.  The hair on my head.  And the hair on my body.  Anything that had been waxed, shaved or plucked didn’t grow.   But, I was still left with my eyebrows and eyelashes.

Until now.  Months later.  After all this time, my eyebrows and eyelashes are falling out.  WTF.  I mean, seriously.  Of course, just to add insult to injury, a few rogue hairs remain.

Given a choice – hair on my head, or eyebrows and eyelashes?  I want my eyebrows and eyelashes back please. Don’t get me wrong. I miss my long hair. But when you have no eyebrows or eyelashes, it’s hard to look anything other than alien.

It’s okay. I’m rolling with the punches.

Not the same.

All cancers are the same.  Cancer is cancer.  This is a very common belief, but it is so wrong.

Today B asked me how things are going.  This is the first time in six months that he’s asked.  I started off saying I was struggling with the side effects, when he interrupted me and said “Oh, yes, it’s the same as it was with R.  It’s fatigue. But it goes away and you’ll be fine.  Just like R”.

I didn’t get a chance to get a word in edgeways, and it would have been rude to interrupt B, so I let him talk and pretty quickly he changed the subject.

The thing is – R had lymphoma.  I have ovarian cancer.  R is a bloke, he doesn’t even have ovaries.  R had a different stage, grade and type of cancer to what I have.  R was on different chemo drugs, and his chemo sessions lasted three hours (mine last seven hours).  The fatigue is pretty debilitating, I’ll give you that, but – for me – it is by no means the worst side effect.

So – the same?  No.  Nowhere near.  Not better, not worse, but very definitely not the same.

Five Down

Five down!

It has been – as usual – a strange few weeks since my last chemo.  J came to see me, bearing gifts of chocolate – medicinal of course!  Both K and A have arranged to come to see me.  M phoned to check on me in spite of the fact that she has just come out of hospital. My attempts to go to work were thwarted by an outbreak of norovirus (and colleagues who had it, still came in to work – WHY???).  Better to be safe, I stayed at home.  But just in case I didn’t have enough to think about, a hot red lump appeared on a chemo vein.  Rather than phone AOS who always seem rushed off their feet when I have called before, I called my GP and made an appointment.  Her opinion was that there had been a leakage of chemo fluid and I had an infection, so I would need antibiotics.  She explained when I should take them, saying they can cause nausea and vomiting, and added “but you’re suffering from that anyway, so take them when you want”.  Jeez, thanks.

For the most part, I have managed to keep up with my walking.  Although it has been a struggle at times, I feel I have achieved something, and it has to have done me good.

The good news though was that unlike my previous two chemos, this time my neutrophil count was high enough, and chemo would go ahead without any further hassle.  I was so relieved, the “will it, won’t it” cycle has been stressful.

So, chemo day came and went as before, and I have to continue injecting the Zarzio, it does seem to be helping my neutrophil count, so I grit my teeth and get on with it. T picked me up afterwards and I went home and collapsed on the sofa exhausted. 

This post-chemo week has been the worst so far. I have actually lost my appetite for certain foods, the thought of other foods turns my stomach, water tastes strange and I have to force myself to eat.  My throat and tongue feel like they have a deep shag pile carpet glued on them, my tinnitus is worse, and in addition to the ringing I can hear my blood pulsing round *woosh, woosh*.  Muscle and joint pain, bone pain and extreme exhaustion are all worse.   My nausea and vomiting comes back towards the end of the week and I resort to taking more Ondanestron (dry mix cement, remember?) and so I double my intake of prunes.  As for brain fog.  I don’t know who or what I am, I can barely string a sentence together.  But, only one more chemo to go.  One more cycle of this to get through.  Five down, one to go.  Almost there.

Four Down

Fourth chemo done.  I was convinced it wouldn’t happen.  Well, not so much that it wouldn’t happen, but that it would be delayed.  I don’t want any delays.  I want this all over with.  I want to start to feel better.  Anything is better than this.  I’ll still have my chronic pain, but it’s a doddle in comparison to what I have now. 

Another call from the hospital, my blood count had not risen enough, but come to the ward as booked, and they’ll test me again.  I felt so frustrated: after giving myself the injections, somehow it still wasn’t enough.  Don’t worry about it, my chemo nurse told me.  Easy to say, huh!

T came with me again, both of us anxious to know how the day would turn out (cue the Clash “Should I stay, or should I go”).  The nurse took some blood and came back to say that – again – although my blood count had gone up, they would need the consultant’s authorisation to do chemo.  Then followed a horrible few minutes of confusion – I asked what my previous pre-chemo blood count was, compared to this one.  The nurse gave the wrong figures, so that it looked like my blood count had dropped from the previous time.  What then is the point of all this if it doesn’t work, I asked T.  Fortunately, his analytical brain kicked in and he checked again with the nurse, when it became clear what the figures actually were.  The injections had, after all, worked.  Just not well enough.  So, we waited for the consultant.  And we waited…….eventually the nurse asked if I was prepared to go ahead with the pre-chemo meds, she felt sure the consultant would give the go-ahead, and rather than wait for him to turn up, we could save some time.  I agreed, let’s get this started.  An hour later the consultant appeared and said, yes, chemo could commence.

The week following chemo gets worse, and worse.  Pain, sickness, nausea, heavy fatigue, until day 5 and 6 when I am incapable of doing anything, even T is worried.  That chemo fatigue – it’s like no other fatigue I’ve ever had, it’s utterly overwhelming.  I bear more than a passing resemblance to Uncle Fester, I don’t even care about that, I feel so sick.  I tell myself that in a few days’ time, I will start to feel better, I will be better than this, it won’t last.  But it’s grim.  The reduction in Paclitaxel hasn’t done anything to alleviate my side effects, but I’m not taking into account the cumulative effect of chemo.  I am hoping though that it will result in a quicker production of white blood cells.  I only have 2 more chemos to get through.   Two more.  

The Halfway Point

Finally, I’m halfway there (wo-oh-ah, livin’ on a prayer…..thanks, Bon Jovi!).  The halfway point is a good one to tick off, not too much longer to go.

This one almost didn’t happen on schedule though.  I got a call from the hospital to say my neutrophils were less than half what they should be, and there was a chance we couldn’t go ahead with chemo, but equally the blood count can rise quite quickly.  Was there anything I could do to help my chances? No, just stay away from sick people (bloody sick people, they are everywhere!).  I needed to come in to the ward as scheduled, but they would give me another blood test before proceeding or sending me away.  I worked myself up into a stressy mess worrying about this.  I don’t want chemo, but I want this over as quickly as possible, so I really want everything to be on schedule.

On the ward they did the blood test, came back and said my blood count had gone up, but was in the bracket where they needed an okay from the consultant before proceeding.  The consultant said chemo could go ahead, but I would need to inject Zarzio from days 5 to 10 to stimulate my bone marrow into producing more white blood cells.  Where did I need to inject myself?  In the abdomen, the nurse told me.  Cue loud screaming, weeping and wailing from me.  Couldn’t I inject myself somewhere other than the abdomen? No.  Oh, dear god.  Aaargh!  Panic.  I could barely cope with injecting myself in the thigh for six weeks after surgery, but my abdomen? Surely I was going to stab myself in a major organ?  The nurse said no, that wouldn’t happen.   I agreed to do this, because if this gives me a good chance, I have to take it, but it stresses me out.  And so I had my chemo session.

The days following chemo are grim, much worse than the previous ones.  I try to find a calm place mentally, to deal with it.  I’m stuck with this, for the time being, if I can get through the next week, I will start feeling better.  The pain, the exhaustion.  Tinnitus, folliculitis, nausea, constipation.  And yes, I have bought all the prunes 😊  Living the dream.

The Zarzio?  The list of side effects is so awful I gave up.  I didn’t need to panic any more.  I told T to read the leaflet and that he had to be with me when I did my first injection “just be ready to dial 999”.  Reader, I survived.  So far.

I have a check-up scheduled with the oncologist mid-week.  I don’t know what will be accomplished by this (because it is so early on) but hopefully, somehow, he will say something positive, something to give me hope.

Grumpy Corner

I seem to hit a point every few weeks where I feel really emotional. I mean REALLY emotional. I cry at everything. Ah well, go with the flow…..

My gripe this week? People. Everyone except my hardcore three supporters has now vanished. My faithful three are there every day, or every few days, checking in on me and making me know I am loved. The rest – friends, family, acquaintances – gone. I guess they feel they’ve done their duty. I make contact with friends, and they are busy, or distracted, or not available. The cherry on the cake? K told me “I don’t need to ask how you are, I read your blog instead”. Thanks, pal. This makes me sad. All I want if you are my friend, just be my friend, behave normally, tell me about yourself, your life, don’t close off the conversation once you’ve asked how I am, we are all equally important no matter what is happening in our lives, I am still the same person I was before.

Second Chemo

Two down, four to go.  I had my second chemo last week, and it knocked me off my feet.  I am beginning to understand why my oncologist said I wouldn’t cope with work whilst having chemo.

I’d been given extra meds to deal with nausea and vomiting, and, thank heavens, these did the trick.  However, it was like eating a bag of dry mix cement – nothing came out either end.  Oh, the joys of constipation when you’re already feeling grotty from chemo.  The other side effects I’ve been having were much worse this time.  The intense fatigue, and the muscle and joint pain.  Since I already live with a chronic pain condition the mix of these was fairly unpleasant and I was unable to go to work at all that week. I am cold all the time and I now have tinnitus.

I am still hopeful that I’ll be able to keep doing some work over the course of my treatment, to keep that bit of “normal” in my life.  I am still trying to get the balance right between doing things, and getting the rest my body needs.

I had a minor crisis over the weekend when my temperature shot up.  I called the acute oncology service who checked my medical notes and asked me to monitor it every couple of hours and call back later in the day.  Fortunately my temperature went back to normal, and they advised me just to keep an eye on it, but to call back if any problems.

The bad week left me with a real low.  I am not beating myself up about this, there will be times I feel low, and there will be times I feel happier.  That is normal.  Go with the flow.  It is if I get stuck in a low, that I need to do something about it.

I saw my GP during the week and she said to me “you know you’re not allowed fresh flowers, don’t you?”.  Eh….. what?!?!?  I had a vase of flowers at home, which included lilies (and lilies have a lot of pollen).  Even she was frustrated at the lack of information given by the hospital.  I went home and threw the flowers in the garden.  Live and learn.

My sister in law popped in to see me yesterday afternoon.  I hadn’t seen her since my chemo had started.  She pointed to the cap on my head and asked “has your hair fallen out?”.  I didn’t answer, I just pulled my cap off.  She recoiled in horror.  I don’t know who was more shocked – her at seeing my bald head, or me at her reaction.

Hair today, gone tomorrow

I forgot to tell you about my hair, didn’t I!  My chemo nurse and my oncologist had made it quite clear that my hair would fall out.  It is not something I wanted to happen, but I was resigned to it.  It would happen within two to two and half weeks after my first chemo.

I found myself getting quite stressed about when it would happen.  I didn’t want to be sitting at work and – ping – a large clump of hair would fall out.  As it turns out, I was at home and I had just washed my hair.  So far, so normal.

I went upstairs to dry my hair, put some hair serum on my hands and ran my fingers through my hair.  As I pulled my hands back, there in each hand was a huge clump of hair.  It was the stuff of nightmares.  I stared at it a while.  I stupidly thought if I ignore this, it won’t be happening.  I ran my fingers through my hair again and, again, more clumps of hair.  I had a little cry and then went back downstairs to have a quiet think.

I had to bite the bullet and just shave off the rest.  If I didn’t do this, I’d have a hedge of hair running across the middle of my head, and bald patches at the side.  Not a good look.  So, I covered the bathroom floor in newspaper, got the scissors and hair clippers and cut, then shaved off the rest of my hair.  I was left with some bald patches and some bristle (a “number one” haircut).

Amazingly some of my bristles are still clinging on, but I am shedding them day by day.  Eyebrows, eyelashes and body hair don’t appear to have thinned.  Yet.

I feel as if I look like a freak.  One gets so used to seeing oneself – in this case with shoulder length hair – that even though it is gone, one still expects to see it when looking in a mirror.  I think I have got over the shock now, although it does still look odd to me.

I have a selection of pre-tied scarves and caps to wear (thanks, Amazon) when I face the general public, and otherwise I wear a beanie or nothing on my head at home.  I can’t get over how cold my head gets.  I slept in a beanie until I managed to find some thinner caps to wear in bed.  With my current brain fog, I put one on, thinking there was a lot of space in the cap, went to sleep and woke up with the cap having worked its way down over my face, with just my mouth and chin sticking out.  Aah, I should have folded up the edges.  Why didn’t I think of that!

Back at work, lovely H forestalled any strange comments from people by saying “doesn’t R look glamorous” each time someone started to mention my lack of hair.  S sent me a message that night saying how beautiful I looked.  I loved that – I am not beautiful, but she knew how vulnerable and odd I felt, and she just boosted me. 

I mentioned to a friend on social media that I had thought of sending him a photo of my bald head but then I chickened out.  He replied that he wouldn’t judge me if I sent him the photo.  Judge me????? What’s to judge? I didn’t choose to get cancer, I didn’t choose the side effects. People, huh.  Ups and downs.