I try to remain positive for my brave Anna but feel heartbreak, fear, frustration, exhaustion
Thursday, March 5
Injection day today.we are on day nine of Anna’s second cycle of the immunotherapy. In each cycle she has injections every day for 10 days plus immunotherapy infusions on days six, eight and 10.
Her eldest sister Sarah and boyfriend Lewis are visiting until Sunday so we are trying to fit in some fun family days but it is proving really tricky as she’s really struggling this week.
We think it is may be because the first cycle of treatment was so painful that she is now so scared this time around will be the same and she’s putting up a bit of a fight, getting really upset with the procedures.
Luckily, today’s injection went much better so it was a quick visit and afterwards we headed out to Top Of The Rock at the Rockefeller Center.
At the start of the tour unfortunately, Anna suddenly started to feel unwell with severe stomach ache and was quite upset. We always carry instant warm packs in case of pain but they weren’t enough even with a dose of morphine so Anna and I had to leave and head back to the apartment.
The rest of Anna’s day was spent in bed asleep, dosed up on pain relief but at least we were all together.
Friday, March 6
Final day of cycle two and Anna has been really scared this time around – even taking her oral medication proved really unusually difficult.
We’ve never seen her like this in the whole three years of treatment.
As well as having fluids through her central line for a few hours before the infusion, she also has lots of blood tests and a whole load of medicines beforehand for pain and allergic reactions, some intravenously, some she has to take herself.
Today, she just couldn’t stomach them and unfortunately most of the medicine ended up on the bed and on her socks but the infusion itself wasn’t actually too painful compared to the previous ones.
Afterwards, when she’d been sleeping off the pain for a while and we were hoping to start the process of getting ready to leave, Anna started to shiver due to a fever. Her temperature shot up, blood pressure and oxygen sats dropped really low and her heart was racing, so a swarm of doctors and nurses were suddenly in the room trying to bring her round from her morphine-induced sleepiness.
It was all very scary while they gave her oxygen and hooked her back up to fluids to raise her blood pressure but the medical team were amazing and they soon got her comfortable again.another few hours later, they were happy to let us leave but Anna got herself into a state of panic again when it was time to do nose swabs and have her mediport lines removed. I think she’d just had enough. It’s been one of our toughest days so far and I admit to going off to the toilets on the ward for a massive cry.
I always try to remain positive and stay strong for Anna but sometimes it’s all just too much. It’s such an overwhelming mix of emotions – heartbreak, fear, frustration and exhaustion.
Sunday, March 8
We woke to see another beautiful sunrise over Central Park. Being in an apartment rather than having to stay on a hospital ward makes such a difference to Anna’s wellbeing and experience here.
Wards are the most exhausting and chaotic places, so being able to come away from that creates more normality for her and gives her a life other than just cancer treatment. Even on days when she isn’t feeling great, she loves being pushed through Central Park in her wheelchair, whether it’s to hospital appointments on the Upper East Side or just for some fresh air and to walk her dog Murphy.
The carousel had opened in the park today and Anna felt well enough to go on, she had a great time.we also went to Strawberry Fields and the Imagine memorial mosaic tribute to John Lennon. As huge fans of his music, it’s the girls’ favourite place in the park.
Monday, March 9
We had a call from MSK (Memorial Sloan Kettering Cancer Center) this morning saying they’ve reduced the number of visitors accompanying each patient to two, the first sign of coronavirus taking hold.
That’s fine when it’s only check-up days like this week but it will be trickier on long treatment days like Friday was.
Ian and I both need to be there on those days but that would mean leaving Ellen on her own at the apartment and none of us is happy with the thought of that.
It’s been 21 degrees today, I took Ellen and Anna to the park for ice-cream while Ian tried to get some work done.
Anna had a huge boost again being out in the sunshine, she’s still taking a couple of doses of morphine for pain at the moment but we can already see her improving and gaining strength.
Tuesday, March 10
Anna had a check-up at 10am with the Sarcomateam.when we arrived on the ward, we were asked if either of us had been out of the US in the past 14 days. When I told them I’d had a brief visit back