How are you?

How are you? This is a question I have learned to dread. I do my best to avoid people who might ask this, and if I can’t avoid them, I do my best to answer in a way that they won’t realise I haven’t answered their question.

Given the (minimal) information I was given by my healthcare team I had every reason to expect that I would be, and would feel, reasonably well – especially now – with my last chemo having been in July 2019. As it turns out, I am not well, and I do not feel well, and having done some research and spoken to a number of cancer patients, in fact the situation I find myself in now, is not at all uncommon. It’s just that no-one tells you about it.

Of course, many people who have not experienced cancer first hand, have very little knowledge and understanding and generally (yes, I said generally, not always) go by the assumption that chemo is finished, so you are now fine, end of story. The difficulty comes when you try to explain what is going on and they get this blank look on their face and they say “but you look so well”. Yeah, that makes all the difference, thanks, bud.

Everyone’s experience is different and there are those who are much, much worse off than I am, and there are those who, luckily for them, had a relatively easy time and are reasonably well. But this is my experience, and I know now, that I am not alone in this. And all this without going into recurrence – a topic for another day.

I have cognitive impairment – the posh term for brain fog. It is not as bad as when it was during chemo, but I still struggle mentally, some times worse than others. Way to help me feel stupid. I have tinnitus, the joy of constant ringing in my ears, with the occasional much louder, sharp alarm going off just to give me a bit of variety. Woo hoo. I have fatigue. Again, not as utterly debilitating as it was during chemo, but nonetheless, it whacks me on the back of the head and I have no choice but to stop and sleep. How to feel aged by 50 years. I have nerve damage from surgery and to politely summarise it my bowel and bladder function is not the same as it was – I’ll spare you the extra detail here. I have chronic neutropenia, and no, it doesn’t get better, and yes, it’s tiresome worrying about picking up an infection (never mind COVID-19, thanks 2020 you bastard). And I have pain. Constant, never ending pain, sometimes worse than others. There are times it is so bad I alternate between having my head down the toilet throwing up, and lying on the bathroom floor wondering how I am going to stay alive. There are times it reduces me to tears, there are times I have to stop and give up what I am doing and there are times I plough on, but still in pain. It’s amazing how much pain we learn to live with. But yes, this gets me down. I have no alternative but to carry on with life as best I can – there is an awful lot I cannot do, but really, what alternative?

So, how am I, you ask? Nah, I’ll pass on that question if you don’t mind.

Blogs and Books – the eternal search for information

Where has time gone? Not just this year, but previous years. Looking back it has been pretty much a constant fog for…..for just too long. Traumatic and tragic events happen and life has been spent just rolling with the punches. And then we have Covid-19. Thank you life, but we didn’t sign up for this, none of us did.

Wasn’t this supposed to turn us into kinder, better people, who realised what was really important in life? Maybe then it is time we focused on what really is important – each other. Forget politicians, right now it is more important to keep everyone we know, as well as ourselves, safe and well.

I’ve finally given in and moved from “mainstream” social media, to specifically cancer-focused social media. And what a relief. I can post about how I am and how I feel, without someone jumping in and misunderstanding, or someone telling me if I would just eat this or do that then my life would be saved, or without someone panicking. Whilst I so appreciate the support I’ve been given, it is a huge relief to be able speak amongst those who truly understand because they are living through this too. I didn’t realise what a difference it would make, not only in terms of support and understanding, but also for me to gain knowledge.

I may have already mentioned how I struggled to get information from my medical team and in my frustration had to resort to Google, which is the major source of my information now. Yes, I fully understand the dangers of listening to Dr Google – the information is not case specific to me and of course can be unreliable. But a balance of this and the extra information from social media has certainly been beneficial. It would have been helpful if I had known from the beginning that not only would I never return to “normal” but that I could end up living with lasting damage caused by my chemo, which completely changed what I am able to do. I kept thinking I had been doing something wrong but now I find out that it is actually quite common to have these “late effects” (or co-lateral damage, as someone calls it). I have wanted to post about this for a long time, but I’m still going to put that off a bit longer as it’s a miserable negative rant!

I would like to share some books and blogs which personally I have found very helpful.

Dr Beverly Zavaleta wrote a book called “Braving Chemo” which is excellent. Although she is American she also very helpfully lists resources in the UK.

Dr Cordelia Galgut wrote a book called “Living with the long-term effects of cancer” – again an excellent book which deals with not only the physical but the emotional trauma.

Now to blogs. As with books, nothing beat’s people’s personal accounts. There is a big focus on happy endings and good stories in the accounts we read on cancer charity websites. Whilst we all need good, happy news, the brutal truth is that not everyone has an easy time of cancer and treatment, and not everyone has a happy ending. For me personally I want complete brutal honesty – the good and the bad.

Although we might not always have the same cancer, our overall experiences can be similar and blogs and blog posts that I have found resonated really well with me are:

Nancy’s Point

Ticking off Breast Cancer – especially the guest blog on “What not to say”

Chris Lewis’s blog which I’ve mentioned before on here

Killing It Friday – especially the post “The ones that stayed”

And, not to forget the brilliant podcasts from Thanks Cancer

Please, take a look at these, I hope that they are helpful for you too. Until next time, stay safe and well.

Questions

Questions. We all have them, don’t we? Well, I think we do. They sit in our heads, buzzing around, keeping us awake at night, driving us round the bend.

And of course, whilst we have questions to ask, there are those who very definitely don’t like answering them. My oncologist is a case in point. I had to push, push, push – asking the same question time and again, in different ways and he still wouldn’t answer. When I was transferred back to the Gynae department I said I can’t ever deal with him again. Turns out that I am not the first person to have said this. I have since spoken with other hospital staff and patients and when his name is mentioned they all say “you’re not the first”. The question begs, why is he still working there? Why has no-one said “look pal, adjust your attitude”? I guess I’ll never know.

There are of course many other questions. When will this Covid-19 hell end? When will people stop complaining? Will the world ever become a better place?

I spoke with a group of trainee doctors last week about my “cancer experience”. They asked and I answered. One asked “are you currently up to date with your cervical smears?”. I wanted to say that my cervix is probably sitting in a jar of formaldehyde on someone’s bookshelf, or it is in a laboratory where someone is poking all sorts of nasty bugs into it, or it is in the pile of incinerator waste wherever that is kept and if anyone can find it they are free to smear it. Instead I said whilst I still had a cervix, I was up to date with my smears. I wanted to ask them “since I’ve had a complete hysterectomy, what exactly is supporting my vagina, or is it just flailing around inside of me like an old sock?” but I thought that might scare them off a career in medicine, so I kept that question to myself.

We are all waiting for better days, in different ways.

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.