The waiting game

I finished my chemo and have been hanging in limbo ever since.  The support system that I was told would be set up, hasn’t been set up.  I don’t know who to ask for advice.  My GP doesn’t have the specialist knowledge, nor the time.  My key-worker (I am now on the third one, as they keep going away on maternity leave – cue rolling eye emoji) is difficult to get hold of.  It will be four and a half months between the end of chemo and my oncology appointment for my first batch of test results.  The nurse said to speak to them about “anything that’s not normal for you”.  Here is my issue:  nothing is normal anymore.  Nothing.  Even when I disregard my scar, I don’t look like I did before surgery.  I was stapled together on the skew and now have bumps and distortions on my abdomen which didn’t exist before.  How do I know what to be alarmed about, and what to ignore.  No-one has time, everyone is rushed off their feet.

Everyone else just assumes you’re fine, you’re cured.  No-one asks how you are. It’s a horrible time. It’s a waiting game.  I hate games.

I’m not feeling well, I am utterly exhausted, I have so much pain.  I have lost the ability to distinguish between my chronic pain, and chemo-related pain.  I am trying to get back into normal life and failing.  The final straw came when I felt a small lump.  To cut a long story short I have finally spoken to both my GP and my key-worker and they decided it would be a good idea to bring the tests forward.  By Thursday next week I should have my results.  I don’t know what to think, I am stressed, but I am tired of all this.  Deep breaths.

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The Big C Centre, Norwich – a Shout-out!

I will have mentioned in the beginning stages of my blog that I was writing for a number of reasons, but mainly to get things off my chest, as a catharsis, but also to tell it like it is.  The result of this is that this is not a happy blog, but it is an honest blog, and I feel that is more important. There are many accounts by people of their experience of cancer which are positive and not full of negativity.  This is great too, because what works for one person won’t necessarily work for another, and to have all aspects of this experience to read is much better and more balanced.  Not everyone has a terrible time of it – in that for some, the treatment runs relatively smoothly and they have a good prognosis.  I have no wish to negate that.  My blog is simply my experience.

There are a number of cancer charities across the country, and they all do wonderful work. The Big C is Norfolk’s cancer charity and today I’d like to give a shout-out to them, and the wonderful work they do.  During the course of my treatment I never had the chance to visit the Big C.  My chemo sessions lasted 7 hours, after which I was in no shape to do anything.  Then the intervening time between that and my next chemo, I spent recovering and was not able to get myself to the nearest Big C Centre.  I finally managed to get myself there last week.  What a wonderful place!

The staff are lovely, kind and welcoming.  The main area in the centre is calm, relaxing, well lit.  It feels like you are in someone’s home.  There is such a good vibe about it.  Comfortable chairs and sofas with cushions, magazines and bowls of fruit on small tables.  It doesn’t feel clinical in any way, it doesn’t feel like a waiting room.  You can just walk in, sit down and feel relaxed.

They offer a range of different ways of supporting people with support groups for men and for women; a carers’ meet-up; relaxation sessions; a monthly programme helping people look at ways to live a healthy lifestyle, including food and diet, exercise and rest, and dealing with anxiety; complementary therapies including massage, Reiki, reflexology, relaxation techniques.  They also offer counselling; one to one support; the opportunity for a one to one discussion with a nurse; the opportunity to talk to someone on a more informal basis.  They have access to further information and advice.  They are involved in supporting with those who have cancer, those who have had cancer and those who support people with cancer.  And there are many more wonderful things this charity does.

These people are amazing, they are a lifeline for some, a strong support for others. If you have a local cancer charity near you please pop in and see them, they are worth your support, and you will in turn get great support from them.

Things people say

I wanted to title this post “Shit people say” because really, that’s what it is. There has been some controversy recently over the MacMillan Cancer’s “Brave the Shave” fundraising. I thought about it a lot, and it led me on to things people have said to me during my treatment. Don’t get me wrong, I have the most amazing support from some people, but I seem to have collected a few odd ones along the way. I am probably more upset about this than I would ordinarily be, with my cancer coming on not long after the death of my mother, and so I am feeling somewhat more vulnerable than usual. Anyway, I thought I’d make a list, to get it off my chest.

Things that have been said to me:

You’re so brave

You’re so strong

You’re my hero

You look so well

Be happy

I’m here for you (but they are never about / disappear when you say you’re feeling low)

Yay I don’t have cancer

It’s the same as so-and so – you’ll be fine when its finished

Everything happens for a reason

Why did you choose this

All cancers are the same, it’s cancer

There is only one chemo for all cancers

Talking about hair loss – it will grow back – duh

I can see where your eyebrows were, they’ll grow back in the same place

Put yogurt on it (chemo rash)

Try cannabis oil it cured so-and-so

So-and-so was fine, so will you be

The thing is anything goes these days, it’s acceptable for a woman to be bald.  So you’ve got cancer, so what.

Saying things that are insensitive and then saying I was only trying to make you laugh

And then there are things simply assumed or just not understood:

That the minute chemo stops you’re instantly well (assumption)

That once chemo stops you no longer need support (assumption)

That you haven’t asked your chemo team questions of your own; that you haven’t researched as much as possible about your condition, treatment and options (assumption)

The lack of understanding what cumulative means in terms of the side effects of chemo “oh, but it gets better as it goes along” uh…..no

Chemo fatigue v/s healthy tired (not understood)

Finding the balance

I struggle with the weight of people’s expectations, against how I am actually feeling. I know full well this is my problem, that only I can change this. But knowing this doesn’t make it any easier.

I go to work when I can, not because I feel well, but because it is so important to me to try to have some bits of “normal” in my life, however brief. There are times when I feel consumed by cancer and chemo’s side effects, and I hate this. However, through no fault of their own, others don’t often understand. They assume that because I am at work, I am fine. They assume because I have had my last chemo treatment I am fine. They will ask how I am. Sometimes I say I’m fine, but when I go, they express surprise “going already, are you okay?”; sometimes I tell the truth – actually I’m feeling pretty rough, but I just want to try to get a few hours’ work in – only to be met with “but you’re looking so healthy”. What do you answer to that?

I have updated everyone on the advice I have been given by my oncology team, how long to avoid the risk of infection, roughly how long it might take to return to base level normal etc. I have tried to explain how my last chemo really floored me (what part of cumulative are you not understanding). Of course being in the middle of my neutrophil low, doesn’t help my mood and I am depressed and irritable. I know however that this will change, my blood count will increase, my mood will improve and slowly I will start to recover from the side effects.

And still, I feel I have to make that bit more effort, I ignore the signs my body is giving me (stop, take a break, rest) and think I can do this. And of course I pay for it afterwards. Over the course of my chemo I have struggled to get the balance right, and still I have not learned to do this. I want so much more of myself. I know in time it will happen, but, in the meantime, oh, the frustration!!

Six of Six!

Six of six.  I can hardly believe it.

T dropped me off at the hospital in the morning, and when I checked in the receptionist smiled and said “it’s your last chemo!”.  Yay!  My nurse greeted me with “it’s your last chemo!”.  Yay!  I just had 7 hours to get through then I could go home.  K, H and M sent me good luck messages for my last treatment.

All went as normal through the day, and my last bag of meds went in.  I knew then I just had a 3-minute flush through and I’d leave the hospital.  At last, I could hardly believe I’d got to this point.  The nurse set up the flush through and almost immediately I got the most terrible pains in my hand and up my arm.  I called her back, fully expecting her to say, oh, it’s okay, and to make a minor tweak and things would be fine.  But instead she got a look of panic on her face.  She switched off the machine, took the drip bag and tubes to the floor and made me hang my arm down.  She asked more questions and examined me and then called another nurse.  More questions, more examination and then she put a needle in the canula and started drawing out fluid from my arm.  I was slightly in shock, and so doped up from the meds that I just watched blankly.  After a while they agreed they’d need to call the consultant.  He came over and further questions and examination followed.  He said I’d need to stay a while longer under observation.  In the meantime T arrived, having expected me to be waiting outside.  “There’s a slight delay” I told him. It turns out I had a collapsed vein.

Unfortunately this last minute turn of events completely took away any elation I would have had at finishing chemo.  All I could think of was thank heavens this happened with the final flush through and not with the meds. 

Finally the consultant agreed I could go home, but had to monitor myself for any changes etc. and so we left the hospital.

Sometimes with chemo side effects it is difficult not to get paranoid, and find the balance between what really needs attention or what might just need further monitoring.  Over the course of treatment I became a bit more relaxed about some of the issues, but remained nervous about others. Needing to call the Accute Oncology Services was a stress in itself as, through no fault of their own, they were so over-run and it was hard not to feel you shouldn’t be taking up their time.

So my final chemo is done, but the story is not over.  It has been a crazy eight months from the time I first went to my GP to this point.  Due to a combination of shock, medication and side effects, time took on a different aspect.  I found it hard to know which day it was, weekdays and weekends all flowed into each other.  Eight months – where did they go.  I can pretty much write off the rest of this year as Dr D has told me to allow a minimum of 6 months for all the effects to wear off before I return to my base level of normal which leaves me with my chronic pain.

My experience is, simply that, mine alone.  What anyone else may experience over this process could be similar or completely different.  Even if we have the same stage, grade and cell type cancer and the same chemo dose and drugs, our experience could be different.  It has been an education for me, in terms of learning about cancer, my body, what I can (and can’t) survive and cope with, other people’s knowledge (and lack of) and behaviour.   I have documented my experience as a therapy for myself as there is only so much you can dump on other people, and one can only go for so long saying “it’s not too bad” or “yes, thanks, I’m good” before you have to acknowledge no, it’s bloody awful.  I am fully aware that many people have a far worse experience of treatment than mine, and many have a far better experience.  It is what it is.  I am in awe of those that have survived in the past, the progress with research and increased knowledge has made treatments far more sophisticated and targeted, the knowledge of different cancers has helped treatment. Things that weren’t known then, and weren’t possible years ago.  How much more difficult it was for patients then.

I have tried at times to see the funny side (dark humour mostly, because let’s be honest, not much is funny) of this process.  But in all that there have been some desperate, horrible lows, both physical and mental.

People say things with the best intentions and it is difficult not to be frustrated at times.  Ultimately I believe unless you have gone through the process yourself, you can never fully understand.  It is important not to assume, not to be patronising, it is important not to treat the person like a total idiot, it is important to acknowledge – not deny – what is going on with someone.  If you truly mean it, offer support and be there for it, don’t just say “I’m here for you” and walk away because that is not helpful or supportive.  Don’t change who you are – have normal conversations, the ups and downs, be yourself.  It is so hard to have bits of “normal” during this crazy time, and if friends won’t talk to you other than to ask how you are, it makes any conversation difficult.

Those who love you are going through a different part of the same battle with you.  They can be easily forgotten in the process.  Hold on to those who love you, they are your lifeline. Don’t forget to stop, and breathe.

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.