So the day has finally arrived. Tomorrow is my last chemo. Just six months since my diagnosis with stage four ovarian cancer.
I should feel elated. I should feel relief. I should be buzzing.
But instead I find myself faced with mixed emotions.
On the one hand I’m, of course, relived that I won’t have to go through chemotherapy any more. No more side affects. No more hours of sitting connected to a drip. No more chemo related hospital admission. Instead my body will finally be able to start recovering from months of treatment including extensive surgery.
On the other hand, however, I feel afraid. Chemo has been ‘attacking’ my cancer (and me!) for the past 6 months. It’s been doing its job to shrink my tumours and make me ‘well’. What will happen when chemo stops? Will what I’ve received be enough? Will I hear the magical word ‘remission’ following my final scan? What if I don’t? What if the chemo hasn’t been enough? What if cancer still occupies my body?
And…what if my cancer is in remission? Will I spend my life worrying about its return? Does cancer ever, truly, leave your life? Or does it remain a dark shadow from which you peer at over your shoulder as you try to live as a ‘normal’ human being?
So many questions are running around my head as I write this but don’t worry, I don’t feel sad or depressed I just feel inquisitive and a little frustrated (more on that later). Ending chemotherapy treatment opens me up to the next phase in my journey. It is an unknown phase and, as a result, it’s only natural (and healthy) to enter into it with questions.
I’m not alone in these thoughts either. Every ‘cancer book’ I’ve read which has been written by a fellow warrior shows evidence of these shared thoughts. Every fellow ‘warrior’ I’ve spoken to about this phase also shares some, if not all, of these thoughts and questions.
I take comfort in this.
What is hard, however, is the dialogue with people without cancer and the misconception that the end of chemotherapy automatically means that everything is ‘ok’, that everything is ‘all fixed’, that I am ‘better’. It’s a misconception I had myself before my diagnosis and of which now I feel very sad…and a little guilty.
Unfortunately, in particular with a stage four diagnosis, that just isn’t the case. Instead, the end of chemotherapy just marks the end of what the NHS is able to provide. Fingers crossed its worked and I’m in remission, but, unfortunately, not everyone is that lucky.
That’s another thing – Remission. The magical word everyone with cancer wants to hear. But remission doesn’t mean ‘cured’ it just means that your disease has stopped growing…for now. However, the word ‘remission’ is all too often followed by the word ‘relapse’.
I used to think that when someone was in remission that they were all better, that their cancer was gone and things could ‘return to normal’. Now I know the frustration that this misconception can cause a cancer patient. The end of chemotherapy (and even remission) can be a scary time for a patient. Perhaps even scarier than the cancer diagnosis itself. After months of support and treatment that we know is prescribed solely to ‘treat’ our cancer, we are suddenly going it alone. Yes of course there is the emotional support of wonderful organisations like that which I receive through my local Maggie’s Centre and Macmillan nurse (without whom I would be so lost!) but that ‘medical’ lifeline, the chemotherapy that we hate but that we also know is a necessary evil, is now gone.
Don’t get me wrong, I’ve dreamt of this day for months. With each chemotherapy treatment I have counted down the number of sessions left before I can say I am free of chemo. I’ve seen the happy photos of people marking their last day of chemo – and tomorrow I’ll even take my own, knowing that one day I will want to look back on the monumentus achievement of completing my chemotherapy because, let’s be honest, it’s bloody tough! But, deep inside, I feel like my security blanket has been pulled away from me.
The issue is the frustration of having to explain that the end of chemotherapy doesn’t mean ‘all better’, that maybe I’ll never be ‘all better’, that maybe I’ll be living with cancer for the rest of my days…however many there may be. And that’s ok. I’m still grateful for my cancer – whatever the outcome.
So, amongst my ramblings and deep thoughts that I so desperately want to express because no one ever really wants to talk about this phase of their journey, I guess what I want to do is provide some dos and don’ts for supporting someone with cancer when they are finishing treatment.
- ask them how they are feeling about this stage in their journey.
- ask what support they need – they may want to celebrate or they may want to cry. Whatever they want, be there.
- Understand that this can be one of the scariest times in a cancer journey and the most likely time for social support to cease – be the one to stand by them.
- If they chose to open up to you, listen. Really listen. They may want to talk about outcomes you don’t want to hear about but they need to say those thoughts out loud so that they are no longer as frightening as they seem in their head or even, sometimes, just so they can laugh at how ridiculous they are being!
- Ask if they need you at any follow up appointments.
- Respect their decisions regarding their treatment, even (maybe especially) when you don’t agree with them.
- Respect that they may not want to talk about cancer anymore. They may wish to cease being labelled as ‘your friend with cancer’ and just return to being ‘your friend’.
- Presume that they feel the same way as you do about this stage in their journey.
- Compare them to other cancer patients – everyone is different, even those with the same diagnosis.
- Tell them everything will be ok. You don’t know that and it can stop them from feeling that they can open up to you.
- Only talk to them about cancer. They are still interested in all the same things that they were prior to their diagnosis. They are still the same person.
If you’ve had a similar experience at this stage in your journey, or want to add to these dos and don’ts please get in touch. I’d love to hear from you!
Love and light, Fi xxx