Late Effects and Survivorship

When an NHS patient is diagnosed with cancer, with their permission, their information is added to the NCRAS, with certain data redacted.  The purpose of the National Cancer Database (the National Cancer Registration and Analysis Service or NCRAS) is to collect, analyse and provide data on all cancer patients in England.  This allows researchers and healthcare professionals to understand cancer trends, treatment effectiveness and patient outcomes – thereby informing better cancer care planning and policy decisions across the country.  Researchers use this to study cancer incidence, survival rates and effectiveness of different treatments.

For this to happen effectively and to achieve the aims of the NCRAS, patients’ medical records need to be accurate, not only in recording any recurrence (or not) of cancer, but also the effects of treatment on the patient, both at the time of treatment and in the follow-up years.  It is widely documented that there are late effects from chemotherapy, some which simply continue as side effects once treatment has stopped, and others which occur months or even years after treatment has stopped, yet are directly related to that chemotherapy.

It is clear that not all NHS trusts give the same level of care, and even within one trust, depending on which department you are in, will depend on how you are looked after.  There are a multitude of reasons which can explain some of these differences, including lack of funding and lack of staff. But that does not benefit the patient, and is not the point of this post.  This is not an attack on the NHS, merely a comment from the experiences of many patients.  It feels as if the greater pressure on the NHS often results in rushing through patients like a tick box exercise, instead of, especially in certain cases of more serious illnesses or conditions for example cancer, heart attacks, strokes etc, giving as much information as possible and involving the patient in their care rather than treating them as their illness and not treating them as a human being.  This includes ensuring patients give informed consent rather than pushing the patient to “just sign” and refusing to answer questions because they don’t have time or they feel that their say-so is enough.  It is unbelievable that in this day and age there are still oncologists who don’t understand why their patients might be stressed, anxious and concerned about what is happening and what might happen, and that when patients ask for information it would be useful to inform them.

It is also clear that very few patients are given information or support relating to side effects / after effects / late effects following on from the end of active treatment.  In a lot of cases just because active treatment is finished, it does not mean that life returns to normal.  In my case I was warned that pain issues might continue, but all the other side effects I queried, I was assured they would stop when chemo stopped.  Some did, and a lot didn’t.  I was concerned, and asked my medical team about them, and was completely blanked.  They literally would not answer.  Imagine how that feels.  I ended up believing for the best part of a year, that I was doing something to cause these late effects, that it was my fault.  No matter what I tried, nothing helped.  Eventually I found a very supportive community on social media and found out that what was happening to me was completely normal, it happens to thousands of patients, and yes, oncologists very rarely talk about it.

My oncologist was not noting down any of the issues I raised, nor did she ever validate what I said.  It makes for an uncomfortable appointment.  This also raises the issue of the information passed to the NCRAS.  It is obvious that in many cases oncologists are not passing on details regarding after effects / late effects.  Without this information, where is the motivation to create kinder more gentle treatments?  Chemo is utterly brutal.  Many patients have no lasting effects after chemo, but many do, and in a lot of cases these effects are life-changing.  It is often said that when the oncologist says “patient responded well to treatment” all that really means is that the patient did not die.  And before I get angry responses, it is possible to be grateful to be alive and be angry and upset and the life changing damage done by chemo at the same time.  These two are not mutually exclusive.

It is clear from speaking to other cancer patients that there is a great need for survivorship information and care following treatment.  Not just across the board in the UK, but around the world.  This would benefit everyone – the patient and the healthcare professionals.  Not everyone will need to make use of it, but for some it will be a life saver.

Healing in Public

A social media friend commented that people who wrote blogs wrote such self-centered, inane rubbish and this got me thinking.  Firstly, why read the blogs then, if that’s the way you feel?  I read and follow blogs I enjoy and blogs which interest me, if the content upset or irritated me, then I wouldn’t read it.  If someone doesn’t like what I write, that’s okay, that’s their opinion and I am not doing it for them.  People write blogs for many reasons, and for some they earn an income from it. 

If I was talented, I would write a book, but I’m not.  I don’t write my blog because I think that I’m writing a masterpiece, or that people will love it, or that it fits anyone’s idea of literary acceptability. I write my blog because it is cathartic.  For me, it helps writing down what has happened rather than burdening my friends with this, and also having to deal with their reactions: I spend a lot of time making others feel better about my cancer.  It is therapeutic to scream into the void, and to acknowledge that sometimes life is shit.  To spend the entire time pretending it isn’t, doesn’t achieve anything.

What works for one person, doesn’t necessarily work for someone else.  That’s okay.  Someone wrote “Sometimes we heal in public so the ones doing it in private can keep going”.  Hell, yes!  There are many accounts of people’s experience of cancer and cancer treatments.  Cancer charities often post these accounts, but for the most part they are “sanitised” and generally not much detail is given, the overall “experience” being not too bad.  Not everyone’s experience is the same however. I read all these.  I want as much information as possible.  But when these experiences don’t match my own, I start to wonder where I have gone wrong, am I doing something wrong, has something gone wrong, why is it I’m so sick still…….until I discovered – away from these charities – people’s personal accounts.  Honest, raw information.  I knew then I was not alone, I was not doing anything wrong, that what is happening to me is, in fact, incredibly common.  What a relief. 

There is nothing wrong at all with being upbeat and positive, but there is such a thing as toxic positivity and that helps absolutely no-one.  Don’t misunderstand, charities do amazing work, but one size doesn’t fit all.  And for me, being able to read open and honest accounts of what people are going through has helped me feel less alone, has helped me understand that it is actually very common in spite of it not being mentioned by my cancer care team, or in certain forums.  If someone read my account and it helped them realise they were not alone, that these things happen, then that can only be a good thing.  But, for myself, just to be able to write it, and say, yes, that was bloody awful, and I’m still struggling with the post-chemo damage, it is therapeutic. 

Is it worth it?

Do you ever feel that you just can’t take anymore?  Not in a suicidal way.  I’d love to wake up and feel well, to not be overwhelmingly exhausted, to not be in constant pain, to be able to think clearly, not to have to worry about catching an infection, not to have to worry about being able to keep my job, to just be able to lead a relatively normal life.  I’ve had enough of it.  But it is my life.

It seems that the majority of doctors simply slap “Cure A” or “Cure B” or whatever, on the patient, and don’t want to know how they are afterwards, i.e. as a result of the treatment.  As long as there is no sign of the condition that warranted the “cure” then they don’t want to know.  I use the word “cure” for lack of a better word, because in reality sometimes it is simply a treatment which buys a few more years of life.

Whilst late effects / after effects / collateral damage can be difficult or impossible to prevent or treat, it seems careless, negligent, lacking in compassion or empathy to just ignore how in some cases patient’s lives are completely altered – for the worse – after treatment.  I don’t believe that ignoring this factor is beneficial in the long run to either the patient or to the medical profession.  With regard to the medical profession if they ignore the result the treatment has on the patient (beyond “cure”) there will never be a full understanding of the condition, nor will there be any incentive to find a kinder “cure”.  “So what, you’re not dead” isn’t really an acceptable attitude. There needs to be some kind of focus on quality of life.

I am not stupid enough to believe that had I not had surgery and chemo, I would be fine and fighting fit.  I gave my consent to chemo, because after all, who wouldn’t want a chance at survival?  My consent however, was not informed.  My oncologist hates women.  Considering his speciality is ovarian cancer, you can imagine how well that works out.  He is also of the “just shut up, do what I say and don’t ask questions” school of medicine. 

I finished chemo two years ago.  I have debilitating fatigue, cognitive impairment, tinnitus, chronic pain, degeneration in my spine in my neck and lower back, joint pain, and chronic neutropenia.  These affect every single part of my life.  It took a random GP on an unrelated visit to tell me “you will never be normal, there will be no normal.” That honesty should have been given to me by my oncologist before I started treatment.

I have been told that it is extremely likely my cancer will recur.  Due to the pandemic, I’ve been locked down and shielded for most of this time, so any pie-in-the-sky plans I had of finding a way of enjoying what life I have was delayed.

Life could be worse, of course, and equally, it could be much better.  The more I find out from other cancer patients, the more I realise how many are in the same or similar situation as I am.  Some patients are luckier in that they had a better, more interactive medical team.  In some cases the medical team were really focused on after-care as well, which benefits the patient enormously.  There are however, many cases where this doesn’t happen.

Patients always compare experiences, and one of the things often said is tell your doctor everything.  I agree on the importance of this.  My consultant, when I reported a six-month ongoing pain in my side asked “why are you telling me this?” errmmmm…..because it’s a new symptom which hasn’t gone away and it’s in the relevant area?  She just doesn’t want to know anything beyond my CA125 test and CT scan.  My consultant is not going to change, I am stuck with that.  I don’t think this is okay, but when you’re reliant on the NHS you take what you get.  Advocating for your care only seems to work if you’re dealing with the private health care system.

Looking back over the last two and a half years – has it been worth it?  Honestly?  No. Definitely not.

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.