Last week I had an appointment with my oncologist to discuss the results of my latest scan. Always a bit daunting but as I’ve said many times ‘What will be will be’. She told me my scans and blood tests showed no evidence of cancer. I was officially ‘cancer free’. I have no cancer ‘on board’.
My immediate reaction was to burst into tears. It’s really odd but whenever I’ve had bad news (my initial diagnosis, finding out I had tumours in both sides of my liver, the effects that surgery would have on my life, the need for further chemo before surgery) I’ve managed to stay calm and keep a stiff upper lip. But whenever there’s been good news (the chemo has worked, the surgery has removed all the cancer, you can leave hospital) I’ve blubbed like a baby. Even now I’m finding it hard to stay in one piece.
I asked if this constituted an all clear but she was a bit non-committal and repeated that there was no detectable trace of cancer. I’m taking that as an ‘all clear’. I’m fully aware that my cancer may return at some stage but if and until it does I’m dancing on the ceiling!
Today I have taken my last Capecitabine tablets. No more chemo!
I’d like to take this chance to thank all those people who have treated, helped and supported me so far on my journey. I’ve met some wonderful people during my numerous visits to hospital. Doctors, nurses, HCA’s, technicians, support staff, volunteers and fellow patients. One of the positives about my visits for chemo was the coffee shop run by the WRVSA. They do a fantastic latte. Thank you all so, so much.
I’d also like to thank everyone who has contributed to any of the MacMillan online forums. These have been so useful to me and I’m sure many others. The simple fact that I was not facing my cancer alone and that there were many others facing the same trials and tribulations as me was always a huge positive.
So where exactly am I?
It’s a strange feeling. For the past 18 months there has been a structure to my life. Appointments, scans, chemo, surgery, blood tests etc. And now nothing. I do have a follow up appointment at the end of November but that’s way off. I have to admit that I am struggling with being ‘well’. Not physically, although I still have one or two issues, but emotionally. If I recall what I’ve been through it’s been quite a physical journey. But every step had a meaning, a means to an end. Now there’s nothing.
I know I should be so thankful for getting to this place but it seems very scary. I’ve read that recovering from cancer is like experiencing post-traumatic stress disorder. I don’t know if I’d go that far but it has had an effect on me. I’m not sleeping properly, I get tearful at the drop of a hat and I still have my dark days. When I see people and they say the inevitable ‘You’re looking so well’ I find it difficult to cope. Cancer hasn’t just changed me physically but mentally and emotionally. I don’t know if I’m the same person I was before all this happened. I’m more tolerant (the exception being with politicians), I’m less judgemental, I don’t look for meanings in people’s actions I just accept what happens, I’m drinking a lot, lot less and my attention span is very poor (an example is that I struggle to watch any television program that’s over an hour long). I’m sure those close to me have noticed a change. Perhaps it’s for the better but I think that’s for others to judge.
When I’ve told people about my cancer, the chemo and surgery, they often say how brave I’ve been. It’s not brave at all. I had no choice. I had cancer and it had to be dealt with. There were options:
You need to have chemo or you’ll die
You’ll need to have surgery or you’ll die.
Not really choices. I believe the brave people are those that say enough is enough but I hope it never happens to me.
I’ve just reread this and I am having one of my dark days.
Not the worst. I think that was about this time last year. I was awake one night and I planned my own funeral. I even picked out the coffin I wanted (wonderful thing the internet. It’s amazing what you can find). Being a bit of a greenie I wanted a cardboard coffin with sunflowers printed on it. As I intend(ed) to be cremated I thought a wooden coffin would be a terrible waste of a tree. The songs were (are) going to be ‘Mr. Blue Sky’ (ELO) to welcome people, ‘Bron-Yr-Aur’ (Led Zeppelin from the album Physical Graffiti) for when I go through the curtains and then ‘Smash it up’ by the Damned at the end. Dress code was (is) to be informal (depending on the time of year but I would like everyone in shorts, sandals and the loudest coloured tops they have as that’s how I’d like to be dressed plus a kiss-me-quick hat, sunglasses and a bucket and spade as I’ve asked God for a place in heaven near the seaside) but definitely no black ties! Wake to be at my local pub with the juke box being free all night.
Well that’s cheered me up.
What’s next?
Well I still have peripheral neuropathy in my hands and feet, I get the occasional pain in my arse where my arse used to be, I still have overflow incontinence although this has been greatly relieved by intermittent self-catheterization. I won’t be too graphic with an explanation but look it up if you’re interested. Such fun! My sleep is all over the place but recently I have noticed a bit of an improvement. As I’ve said I have a follow-up appointment with the surgical team who operated on my bowel at the end of November and I’m due for my next scans in February next year. I’m now back at work too.
And although I do still have my dark days I am living life. I can look forward to doing things again, planning my allotment knowing that there’s a good chance I’ll still be alive to eat what I’ve planted, looking forward to a trip to Majorca next July with some old school friends (we’ve known each other nearly 50 years!, the ‘Old Gits’ on tour) and doing normal stuff.
And for all my moans and groans I am extremely grateful to be where I am today. I have been so, so lucky. We’re all given the gift of life that is so precious. I’m one of the lucky ones I’ve been given the gift of life twice. However long I’ve got I won’t waste it.
So part one of my journey comes to a close. This journey is far from over. Part two (titled ‘Being Well’) begins tomorrow. I’ll still do the occasional update with anything interesting as and when but I’m not sure when so just in case may I be the first to say ‘Merry Christmas and a Happy, Healthy New Year!’
