If only I don’t bend and break I’ll meet you on the other side

Audio version, available here: https://soundcloud.com/user-211635300/if-only

This coming weekend is my third canciversary and two years since we discovered that my apparently non-aggressive cancer had gone haywire and was now incurable. I am starting the fourth year of living with cancer.

I wrote last time about what those anniversaries mean to me. Now that I am staring down the barrel of that date (February 15th) I’m trying to get my mind re-focused on the “living” with cancer part of this journey and not the destination. It’s really bloody difficult. There are always things that need doing that some days just take my breath away with how awful this is. Mostly I grit my teeth and power through.

The last few weeks have been more eventful than necessary from a treatment perspective, so there has been more teeth gritting and less time to worry about the rest.

Just after my last blog, I went to see The Prof following the good results of the last MRI. I had assumed that the conversation would be about next steps, continuing with chemo etc. I had loads of questions about what we could do to improve my resilience to the treatment and not feel so terrible. I had some really helpful (and he loves this) suggestions about chemo dose reductions, cycle time extensions, increased Pelgraz injections and more regular blood checks. I had been thinking about how we can get the chemo low enough to be effective whilst not damaging my blood counts to the point where I have to be hospitalised. Instead, he offered me a chemo holiday. He reminded me that I don’t have to do the chemo at all, and given we now had achieved some stability and he had given me more time, this might be a good time to do the bucket list. I wasn’t ready for the word bucket list. I was so shocked I didn’t really know what to say. As always, he couldn’t offer any guarantees about what would happen if I had no treatment, or indeed whether the chemo would continue to work after a break. He reminded me that I didn’t want to do it in the first place and repeated back to me all the reasons that I didn’t want to do it. And for reasons that I am yet to fully understand, I turned down his offer. It’s taken such a long time to get some tumour stability that it just doesn’t feel like the right time to stop and take a break. It’s good to know though, that it’s an option.

Had I known at that point, what the last few weeks would be like, I might have made a different decision. However, as I told him then, when I agreed to do the chemo it was because I didn’t like the only alternative option, and I still don’t. So we agreed I would go on to another chemo cycle and chemo 7 was booked for the following week. I did manage to convince him to drop the dose, but he wasn’t up for my idea of giving me 4 week breaks between doses instead of 3. I will leave that for the next negotiation.

Whilst with The Prof I mentioned to him that I had been having trouble with my left knee. When I had the full body MRI the week before I asked them to look at my knee and was told that the “full body” scan actually stops above the knee, and before the elbows. I asked The Prof how we would know if there was disease in the knee or below if it wasn’t being looked at. He replied that it wouldn’t make any difference to the course of treatment and it was very unlikely that the cancer had spread that far (and therefore why would you bother). However, he agreed to refer the knee for it’s very own MRI so we could see what was going on. Sure enough he called me a week or so later on to tell me “you were right”. Not in a good way. The cancer has spread down my left leg, in to the femur, knee and beyond in to the tibia. I was referred back to my radiotherapy oncologist with the view that more radiotherapy would reduce the pain.

By the time I went back to Mount Vernon the following week, the pain had gone. At this point he had not seen the scan and I had not read the MRI report. We had a very sensible discussion about balancing the risk of treatment with the benefits and agreed to meet again the following week to review the scans. The scans show a lot of mets around the knee, but not where I was getting the pain. So, as I suspected, the pain was actually just a nuisance soft tissue injury and not caused by the mets. This was when I was told that mets below the knee are extremely rare and the reason why they don’t do a “full body” scan became obvious. I have since tried to read up about this and it’s hard to get a full picture but it looks like less than 2% of breast cancer secondaries get beyond the knee. So once again, well done me.

My personal instinct is that those mets are not new. I think they have been there all along and it’s only because we went looking for them that we found them. I was given a print out from the MRI so I can actually see the mets. It’s been quite some time since I have actually eyeballed this disease. It’s quite disconcerting. I will include the picture below, you can see (amongst the arthritis, effusion etc) the white patches in the bones above and below the knee. That’s the enemy.

One other problem with the chemo I am on is that it can damage the heart. For this reason I had an ECG and echo before I started treatment as a benchmark. Whilst I was with The Prof he reminded me that after 6 chemos I have to go back for another heart scan to check for damage. The morning of chemo 7 I set off to the hospital for the scan, which apart from being like a cross between a bear hug and being punched in the ribs, was fairly uneventful. A few days later I was called by the cardiac unit and told I had to go back. Nothing like an unexpected recall to get the ticker going. They couldn’t tell me why, so I made a nuisance of myself and eventually they put me through to somebody who told me that they hadn’t been able to get good enough images to make the assessment. So I had to go back for a contrast echo, which meant cannulation and more jabbing in the ribs, this time with a heart specialist. So far, so good, no recalls.

Chemo 7 itself went ahead first week in February. It was the first one I did by myself, no chauffeur and no entertainer. I don’t feel ill until later on that evening so it is perfectly manageable. As I don’t have steroids or sedatives, it’s quite speedy and I’m fine to drive myself. Later on it hit me quite hard and I slept for nearly two days. My hopes that the dose reduction would help, proved not to be the case. I didn’t start to feel better and by the weekend I knew I was in trouble. I tried to go for a walk and was struggling to breath. Everything was hard work, I was wheezy, breathless and completely exhausted. On the Monday I went back to the cancer centre for blood tests and surprise, surprise: platelets, red and white cells were all far too low. This was particularly disappointing as right before the 7th dose, my blood counts were really good. I had convinced myself that I had this chemo cracked. That is probably another reason why I didn’t take up the offer of a chemo holiday. Anyway, the next day, which just so happened to be World Cancer Day, I found myself back at the cancer centre, for a six hour blood transfusion. I was also prescribed another load of anti-biotics as the neutrophils were rubbish and my risk of infection was high. This would be a good time to point out that my chemo nurses are spectacularly brilliant. They know me so well now that they can tell almost by looking at me what I need. Apart from their ability to look after me they are just such lovely, special people. It doesn’t matter how terrible I feel, or how much I dread a treatment, I know that as soon as I walk in there, I will feel better and be cared for so wonderfully. They are all, and this is especially important, excellent huggers.

All of the above has happened within a couple of weeks. So it’s fair to say it hasn’t been the most joyous of times. However, next week, unbelievably, chemo 8 is scheduled, so fingers crossed for that. I think.

Somewhere in between all of that, I headed back to The Cotswolds with one of my best girls to celebrate her birthday and do a little more exploring. It was very typically January, so there were plenty of pit stops for hot chocolate and opportunities to warm up in front of open fires. Every time we go we find more places we want to return to and this was no exception.

My sister has been reminding me for a while that I promised to do more fun stuff with her rather just let her come to chemo and then watch me sleep for 2 days. So, she scheduled a non-chemo visit and last weekend we headed to Windsor. This was her first trip to the royal borough and so we pushed the boat out and stayed overnight. We had a really lovely trip and I showed her all the sights. We don’t know why “Goswell” is such a common feature in Windsor and it’s not a name that you see often, so when we do, we get very excited. Many selfies were taken and when that wasn’t quite covering it, she took to accosting strangers. The sun was out on Saturday so we were lucky to see the town looking it’s best. By Sunday, Storm Ciara had arrived and we scampered from one shop to the next whilst getting soaking wet and blown sideways. It wasn’t quite so much fun so we escaped inside and ate ice-cream instead.

I have been back at the hospice for yoga, when other appointments permit, which is just great. I also had acupuncture this week to try to help the fatigue. I have been taking afternoon (germ avoiding) trips to the cinema, and there have been plenty of lunches and dinners out. So whilst it has been an intense few weeks from a treatment perspective, I am keeping up my side of The Prof’s deal and doing some pretty good living.

It has also been a quite extraordinary few weeks for receiving gifts. I have been sent flowers, cards, chocolates and beautiful bulbs. All from people just reminding me that I am not in this alone. The day I set off for the blood transfusion I picked up my post on the way out. As the new blood was slowly transfusing in, I opened a lego parcel from an old school friend. It couldn’t have been a kinder or better timed gift, I sat in my chair putting my lego together and once again counted my lucky stars that I am surrounded by thoughtful, generous and kind people. The same day, I opened a letter from an old family friend who has known me since I was tiny. The letter was so beautifully written and she reminded me of a couple of stories of when we visited her when we were little. It brought such a smile to my face. For all of this, I am so grateful.

As I write, I am reminded (because it is hard to ignore) that it is Valentine’s Day.  I am also reminded that I gave myself the 2020 mantra of LOVE & HOPE. So once again, here’s to all that love and are loved and may the day of hearts bring you hope.

heart

Happy St. Val’s you beauts.

Big Love, AG xx


KEANE : Bend and Break

When you and you forget your name
When all the faces all look the same
Meet me in the morning when you wake up
Meet me in the morning then you’ll wake up
If only I don’t bend and break
I’ll meet you on the other side
I’ll meet you in the light
If only I don’t suffocate
I’ll meet you in the morning when you wait
Bitter and hardened heart
Oh
Aching
Waiting for life to start
Meet me in the morning when you wake up
Meet me in the morning then you’ll wake up
If only I don’t bend and break
I’ll meet you on the other side
I’ll meet you in the light
If only I don’t suffocate
I’ll meet you in the morning when you wait
If only I don’t bend or break
I’ll meet you on the other side
I’ll meet you in the light
If only I don’t suffocate
I’ll meet you in the morning when you wait
I’ll meet you on the other side
I’ll meet you in the light
If only I don’t suffocate
I’ll meet you in the morning when you wait