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.

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.