A brief escape from reality

It could be a Sinead O’Connor song……almost.  It’s been 13 weeks and three days, since my freedom was taken away.  I know it’s not that at all. In any way.  But being shielded has not been fun.  Not being able to leave the house was the worst.  I didn’t want to see people, I just wanted my walk.  My walks have always been my therapy, I could switch off and have the time and space to process whatever was going on in my life.  I am however very aware that there are many people who are a lot worse off than me.

Finally the lock-down for shielded people was eased a bit and we were allowed to go out once a day for exercise, socially distanced naturally.  The irony is that since this, I have only been able to get out three times as I was not well enough.  But it’s the thought that counts of course, isn’t it.

R offered to kidnap me for a change of scenery, to drive off into the countryside and have a quiet walk.  What’s not to like about that?!  Off we set yesterday just half an hour out of the city.   No people, no buildings, just big skies and peace and quiet.

It was lovely.  Unfortunately so was the pollen count and my eyes started itching and I turned into the unstoppable snot machine.  Ah, can’t win them all, can I!

Cancer in the time of COVID-19

*Warning* this post contains offensive opinions and bad language……………

Is anyone else struggling to bite back the sarcasm?  Just me?  Ah, that’s okay, I can take it, it is only my opinion after all and I know full well we all think differently, which is a very good thing.

In the UK we have now started the first week of a second 3-week “lockdown”.  I deliberately put that word in quotation marks as it is not a complete lockdown as I understand some other countries have. I am one of the 1.6 million (is that the correct number?) of shielded people, the 12-week lockdown bunch.  I am stuck at home for the duration, completely reliant on the help of others.

Listening to and reading other people’s opinions of the current “lockdown” situation and their feelings about being in that situation just brings to mind the plethora of platitudes (good phrase, huh!!) that were slung my way during the course of my cancer treatment and I’m sorry to say it but it really grinds my gears.  So much I’d love to say in response.

Three weeks lockdown?  I don’t know how you do it, you’re so brave……

You’re anxious, stressed, depressed, struggling?  But you’re strong, you can do this……….

Fucking suck it up pal, it’s only three bloody weeks.  Three weeks during which time you can go out to walk, cycle or exercise.  You can go out to buy essential shopping.  Sod off with your whinging, some people have a 12-week lockdown.  Twelve weeks where they are not allowed out at all, unless they have the luxury of a back garden – but of course beware the coughing neighbour.  Twelve weeks where they cannot go to a shop at all.  And more importantly, there are those for whom this complete lockdown and fear of infection has been a way of life a very long time before COVID-19 hit, who have physical and mobility issues that make them completely reliant on someone else helping them.  And, don’t even get me started on all the able-bodied people who continue to block out slots on supermarket online shopping, in so doing, preventing new, vulnerable customers even registering to do an online order.

And before you attack my opinions, I don’t voice these to anyone.  I listen sympathetically, try to say the right thing and don’t even mention my situation, or the situation of others I know who are much worse off than I am.  I’m not a total bitch.  I fully understand we all react differently to situations and I have complete compassion for anyone who is struggling.  But we seem to have lost a sense of perspective.  Someone asks me how I’m doing and I answer vaguely, all the while thinking that I simply cannot complain when there are so many people worse off than I am.

I desperately miss my walks.  I can exercise at home but it’s not the same.  My walks were my mental therapy, they helped my process my mother’s death, my own diagnosis and treatment.  I had a scan just before my shielding, I phoned my oncology nurse to see if she had the results only to be told that “it hasn’t grown since the previous scan”.  Whilst that is good news, it was news to me that it had shown up on the previous scan.  It was not the time to have that discussion since I have an appointment coming up with my consultant, and my over-riding feeling was as long as I don’t have to be readmitted to hospital at this time I can deal with it.

We are going through difficult times.  We all are.  They might be different, but they are difficult.  We all try to cope and we all have different ways of coping.

I just have to stop, step back and breathe.  This too will pass.

The strangest of strange times

S messaged me last week to ask how I was coping with the Covid19 threat.  I told him that my life was pretty much the same as it had been for the last year and a bit, only now with less food and less toilet paper.

What times we live in, that there are people who have bulk bought, taken out stock just to make a profit, in so doing putting so many vulnerable people in a far worse position.

I’m guessing that you, like me, will now have been placed on a 12-week lock down by the NHS.  One day, life will get better, maybe not for a while, but one day.

Hair

 

It’s no secret that I’ve been an utterly miserable cow for a while now.  I’m struggling physically and emotionally with what my life is now.  As Dr M said to me “You will never return to normal.  What you need to do is find the right balance for your life as it is”.  True, but I am still battling with people’s expectations versus the reality of my life and I need to hold down a job.  In spite of all this, ups and downs are part of life – neither lasts, and I know whilst I am feeling miserable about things at the moment, I will not always feel this way, I will find a way through this and there will be good times ahead.

I’ve been fascinated by my hair – most specifically, the lack of growth.  Isn’t it a thing that whatever hair we have, we often don’t like it.  This certainly holds true with me, my natural hair is very curly and frizzy.  To be fair, I have tried to embrace it but it just wasn’t me.  Hair straighteners were a godsend!  I wasn’t happy to be told my hair would fall out during chemo, but I tried not to focus on this, given I had bigger hurdles to deal with.

So, there I was with a glorious head of hair (thank you John Frieda and GHD!!) getting stressed by the day as to when and how it would fall out.  My biggest fear was that I would be sitting at work and there would be a loud squeak and my hair would fall out onto my desk (no, seriously, I didn’t think it would squeak).  I mean, how humiliating.  Fortunately it didn’t happen like this, and yes, although I went through that bizarre phase of thinking that I would be that one freak whose hair wouldn’t fall out, mine eventually started coming out in huge clumps.

Once I’d got over the horror of seeing myself in the mirror with a bald head, and T no longer did a double take each time he saw me, I got used to being bald.  In fact, it was quite liberating – all that extra spare time which had previously been taken up with washing, drying and styling my hair.  No more worrying about weather conditions (humidity, damp, rain all ruin my straightened hair!).  All the money saved on hair products, no shaving, waxing and epilating needed.  Oh, I could get used to this.  Strange but true.  I told all the men in my life I had now paved the way for them to go bald, so they had no excuse.  Oddly they didn’t see it that way!

On the down-side, in terms of vanity rather than practicality, I have done a cycle of looking rather odd.  First like Uncle Fester.  Then my eyebrows and eyelashes fell out (much later than all my other hair) and I looked like Squidward.

Eventually though, hair starts returning.  First that baby fluff starts growing, in patches, but eventually I have a full head of hair (albeit very short and sparse).  It’s really short, it’s still really soft, and I think this is the best hair I’ve ever had: it’s naturally straight, it’s soft, it’s low maintenance.

But, although very slowly, the hair continues to grow and I start to bear an uncanny resemblance to Sid Vicious, and on occasion, Keith Flint of the Prodigy.  T finds this all hilarious.  Of course none of these are looks I’d choose, but I have to roll with it.  I wake up looking like a thug and then during the day, depending on my headwear, my hair gets squashed around and I just look ridiculous.

I started to think I’ll be the one who’s hair doesn’t curl after chemo…………but no, almost overnight (yes, that’s how it feels) I developed the chemo kink.  This is not as exciting as it sounds.  It is as if my hair has been squashed into ridges.  This is where I am at them moment.  My hair is still not an inch long all over, and I am pretty fatalistic.  What happens will happen.  But it’s equally fascinating and horrifying in the process.

 

 

One foot in front of the other

So much tired.  How much tired can one person have.  I have all the tired.  Five and a half months post-chemo and still I am shattered.  I sleep a few times in the day – half an hour to an hour at a time, and then again, I sleep at night.  I used to go to bed around 11p.m. but now I can’t make it to 7 p.m. without needing a pre-sleep sleep.

My recovery is still frustratingly slow.  Very slow.  I have fatigue, chronic neutropenia, tinnitus and pain.  The muscle and joint pain leaves me wanting to lie down and cry some days.  But I get up and try to get on with life because there is no other choice.  I do my exercises, I go to work. I tell people I am fine.  I cannot give up.

I see my surgeon again early next year.  I’m going to tell her I don’t want to deal with D, my oncologist ever again.  There has to be someone else.  My last appointment with him was so upsetting and stressful it left me feeling there was no point to anything. I don’t want to feel that way.

We do what we do, because we have to, for ourselves and for our loved ones.  We try, we fall, we get up and take another step forward, one foot in front of the other, some days it works, some days it doesn’t, but we persevere.

Being “fine”

This week I had my meeting with my oncologist for my first set of scan and blood test results.  It was upsetting, frustrating and stressful. I won’t go into details, because although all I do on this blog is rant, at the moment I need some time to order the thoughts in my head before I put fingers to keyboard.

What I would like to do however is mention Chris Lewis’s blog.  I came across this via a post on Twitter and, at such an opportune time.  This particular post was about the way we respond when someone asks, how it’s so often easier just to say “I’m fine”. Chris also published a poem a friend of his had written for him, and, for me, it just resonated.  In “real life” I prefer to say I’m fine.  Please give his blog a read.

Are there any other blogs which you have found useful or particularly helpful?

Distressed Rant

And now the hospital has lost my scans. Scans from 6 weeks ago. Scan which were brought forward along with my other tests because I called my key worker about some issues that had cropped up, which I was concerned about.

As a result, my appointment with my oncologist has been delayed. I am beyond stressed and upset.

Parking – aka Stress at the Hospital

I’ve been ranting on an on about parking to everyone I’ve seen since I had my scan.  I guess though the situation is pretty much the same everywhere.  A hospital is built without enough parking for either staff or patients and visitors.  This is a huge bugbear of mine.  My local hospital is built on the edge of the city, people who park there don’t do this for the sheer joy of it, they park there because they are either staff, or they are patients (and very often ill and not in good physical condition) or they are accompanying or visiting patients.  They would not park there for any other reason.  Even so, they have to pay for parking, and it’s not cheap, and there inevitably is not enough parking for everyone.

I needed to drink a litre of water before my CT scan (over a period of 45 minutes) and since T was unable to take me to this appointment, I was driving myself.  No problem, I thought.  I knew what to expect, having had the scan before.  In fact this time would not be as bad since I would not have the two massive cysts pressing down on my bladder, which I had the first time.  I thought my best option would be to get there 45 minutes ahead of time and then have a leisurely drink of my water.

In spite of everything I was very stressed before this scan.  As I approached the road to the hospital I could see a long queue of cars snaking round the back to the parking area.  Uh-oh…….but, there was traffic leaving the hospital too, so hopefully it would be fine.  The first two parking areas were full, but undaunted I headed towards an overflow carpark – as did many others – only to find the entrance had been coned off.  My stress levels started to rise.  The queue of cars then continued, and, you know how it is, you think “they look like they know where they’re going” and follow them…..only to find everyone doing U-turns as the extra parking lot we found was for staff only.  We turned round, heading on the road past the overflow car park.  Cars were driving in – yes, at last, so I followed the cars in.  I passed a man who works at that car park and he said “the car park is full, you won’t find a space, someone just removed the cones so everyone is driving in”.  So in I drove like everyone else.  But I needed to start drinking my water, and fast, I was running out of time.  Everyone was cruising slowly round, desperate to find parking, tempers were fraying. Every now and then I stopped driving and took a hefty swig from my water bottle, like a demented woman.  And so it went, round and round, stop, swig, round and round, stop, swig……I got to the point where it looked like I was not going to find parking, that I’d have to phone the CT unit and say I have to cancel my appointment, and drive home with a bursting bladder, when I drove round the corner and there it was – a parking space.  Thank you god!!  I parked the car, put my head on the steering wheel and cried.  I pulled myself together and headed off to the CT unit.

My CT was for my chest, abdomen and pelvis and had to be done with contrast and so this was injected into my vein.  I had the sensation of liquid rushing up my throat to my mouth.  I knew from the last time that this wasn’t in fact happening, it was just the dye in my veins, but still instinct makes you swallow hard.  And then, the feeling that you’ve just wet yourself.  More alarming the first time, but still you think, no, please no, just as you are given the instruction to breathe in and hold your breath. Into the machine I went. Clench. No, you haven’t wet yourself, but clench……breathe out.  Oh, thank god.  What a bizarre experience. A quick toilet break, and back to the car to go home.  Pheew.  And now to wait for the results.

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.

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.