Each time I sit down to write a blog, I re-read the previous one to make sure I pick up where I left off and remind myself what I was thinking a few weeks ago. As I read “Time after Time” this morning, not for the first time, it felt like I was having an out of body experience. I might not have liked it, but that week early in January I felt like I had a path to follow for 2019. I had a plan for the coming months.
Well, we all know what happens to the best plans.
A few weeks ago, on a Tuesday afternoon, I went to Mount Vernon for my full body MRI. The M25 was clear, I found a parking space near the cancer unit, my scanxiety was pretty high but otherwise everything was going well. I was told I would be in the new scanner, which is great because it’s marginally bigger and I felt slightly less like I was being buried alive. I requested an 80s mix CD to keep me company in the tunnel and strange things started happening. When I went through the breath hold scanning sequences, the song “Take my breath away” began. I tried not to laugh. Towards the end the scanning man talked to me through the headphones to tell me I was doing well and there were just a couple of scans left. Immediately “The Final Countdown” started playing on the CD. If that’s not weird then I don’t know what is. After the hour was up and I emerged back in to the light, I asked the chaps looking after me if they were taking the piss. They assured me they weren’t.
I was due to meet The Prof early on the Thursday morning so there was not long to wait for the results. I honestly was not expecting to hear anything other than what I had heard from the previous scans, so I arrived at his office pretty cheery with a smile on my face and told him I was feeling great. What followed was something of a shock. He told me, and I summarise, that the tumours are active again in the liver. As always, his primary concern is organs and my multiple bone metastasis take second place. The previous drugs that I was on that had been so effective, had stopped working. The targeted therapy I was taking can work for some people for multiple years. But just not for me. With immediate effect I was to come off the targeted therapy and all the hormonal drugs. He told me he wanted to move me on to chemotherapy and I just about fell off the chair. It felt a bit like he had slapped me in the face and as I looked at him he did his best to reassure me that it is not uncommon for drugs to fail and we simply move on to the next one. “Goswell” he said, “this is just a set back”. He explained that he wanted me to start on an oral chemo – which should have less side effects and allow me to maintain a decent quality of life. I asked him whether we could chop some bits off my liver, his concern was that with small, multiple site tumours it impacts the liver function too much. We discussed the ever present pain in my back so we agreed I would have more radiotherapy to the spine. Then he poked me in the back (high tech) which hurt so much I actually pushed him away, which was involuntary and kind of embarrassing. He told me it shouldn’t hurt that much and he was off to look at the MRIs again. I read the MRI report later which confirmed there was tumour activity in the spine as well. The Prof rang me the next day to rule out any liver surgery and also called off the radiotherapy, because the back pain is joint related (arthritis) and not tumours. As I sat in the cancer centre that morning with a nurse picking up the pieces, I truly felt like the world had fallen apart. Again.
For the third year in a row I am starting the year with bad news. I am feeling a little punch drunk and to be honest with you, a bit fried. Third year in a row picking up the phone to make those phone calls. Sending out the messages when I just couldn’t face talking to people any more.
Two weeks on, I’m feeling much better. Trying to regain the perspective and repeating The Prof’s mantra “this is a set back”. On reflection, I needed to get over the shock of that Thursday morning. I was not prepared. It had taken me a long time to have some faith that everything was going in the right direction. But the reality is I have stage 4 cancer and there is no point pretending that everything will be alright. It shouldn’t have taken me by surprise in quite the way it did. I had a good six months from June last year when I felt pretty optimistic. Maybe those windows of hope are the whole point.
I already feel more positive. But wouldn’t it be foolish to put complete faith in this drug and be devastated by the shock of a failed drug regime again. I need to find the balance between being realistic and allowing myself some hope. Because I truly believe that hope is the best medicine and without it, I can’t breathe.
I started taking the oral chemotherapy on 15th January. The cycle is two weeks on, one week off to allow the blood counts and body to recover. I go back to the cancer centre at the end of the 3rd week to check blood counts then start all over again. The drug I am taking is Capecitabine. I have to take 4 tablets in the morning and 4 in the evening. It is so toxic that I can’t touch it – so I pop out the tablets in to a shot glass and chug. The most likely side effects are upset stomach and sore rashes/chapped skin on hands and feet. The rest of the side effects are probably more familiar to any body who knows anything about chemo. To summarise, it’s not very nice. As with all these drugs how one person reacts will be very different to another. The Prof told me I am to consider myself a one person drug-trial. How I can tolerate this and how effective it will be is all beyond my control, and only time will tell. So far, so good though. I have been very nauseous and headachey but I am taking anti vom tablets in the morning and that seems to control it OK.
You can learn about the drug here: Oral chemo
The plan at the moment is that I will do 3 full cycles and then get back in the MRI to see what is going on and how the tumours are responding. That all assumes that I can tolerate and continue to take the tablets and I don’t vomit myself inside out. Apart from the obvious downside of all of that, is that I don’t know for 9 weeks whether it is working. I have written before about the fear and the uncertainty of not knowing whether your body is responding to a drug. It is a terrifying place to be so I have decided not to think about it. I’m sure that’s going to work out just fine…
The other point of note and big question mark is how my body will react to coming off the hormonal tablets and implant. There is a possibility that we are through the menopause and the flushes and delightful menopausal symptoms will ease off completely. Alternatively, my ovaries may awaken from their snooze and decide to have one last hurrah. In which case I get to go through the menopause all over again. As always, nobody can tell me which of these will actually happen. It’s a wait and see. Can you even imagine? I know I can’t.
It’s been a busy few weeks. Lots of appointments and lots of people helping me pick myself up. Helped massively by some amazing floral deliveries which, as always, really cheer me up. I’m so grateful.
I have been at the Hospice of St Francis for various appointments. Most notably a massage and a tai chi class, both of which were amazing and helped me feel better. I will be starting a yoga class there in February because, well, I am not ready to hang up my yoga mat just yet.
I have been out walking and meeting lots of people for cups of tea and lunches. I have given up the booze. On the basis that I feel like I have a hangover most of the time, so far, I’m not missing it. I figured it was only fair to give my poor liver a break. I have made a few trips to the cinema and am making my way through the Oscar nominated films.
It’s not been the best start to the year. I was looking forward to getting through the canciversary without bad news. But it wasn’t to be.
My head is up, I have hope, and I am continuing to put one foot in front of the other. 2019, I’m ready.
Big love, AG xx
Lee Ann Womack – I hope you dance:
I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you’ll give faith a fighting chance
And when you get the choice to sit it out or dance
Dance, I hope you dance