Trial Treatment - Session #1

We've just got home from the hospital after Steve's first session of the trial drug he's now on.

Not a huge amount to report - there are no horrific side effects to this drug which is brilliant. Steve feels absolutely fine and the infusion itself only takes an hour, although he has to stay for an hour afterwards each time so they can ensure he doesn't have a reaction to it. That's nothing in comparison to what we're used to, though - with chemotherapy we sometimes spent up to 9 hours in the hospital so it was nice to still have half the day left when it was finished. The worst part for Steve was having the cannula put in - they always struggle to find a vein and had to make three attempts before eventually getting it in and he was not happy!

Esmée came with us - we checked a few weeks ago that this would be okay as I wanted to be with Steve during the treatment, as I have been every time, but do not want to leave her with anyone else yet! They were fine and said it would be in no way harmful to be around other patients and it was lovely having her there. She was a great distraction for us! We could spend hours just staring at her so today that's what we did! She was a big hit with the staff and other patients too and someone even said she'd made their weekend, which was very sweet :)

The next session is in two weeks time and will hopefully be as uneventful as this one. We're really looking forward to it starting to kick in as it's supposed to relieve the pain, fatigue and loss of appetite he's been experiencing. He can't wait to feel a bit more normal again, hopefully in time for Christmas!

I'll keep updating as we go!

Lots of love Xx

Pain and Drugs

I totally forgot to write about the numerous hospital trips following on from Steve's infection and hospital stay.

About a week after being discharged from hospital in July, Steve started to get severe pains in his chest. We had no idea what these pains were or why they were happening, but it was completely debilitating. It happened a few times a day/night to begin with, and he'd be keeled over in agony. There didn't seem to be any lasting effects from the pains - they came on very suddenly, lasted up to a minute and then disappeared just as quickly as they started.

After a few days, the pains were becoming more frequent and more intense.

I had to call an ambulance on two occasions because he fell to his knees and appeared to be struggling to breathe. He was given gas and air on the way to the hospital for the pains but it did nothing to help.

In total, we went to the hospital 4 times regarding these pains. Obviously, each time, we explained Steve's medical history and that we were aware of a tumour around the area where the pains were occurring.

Three times, he was told that he'd probably just pulled something playing golf or when carrying one of his nephews when they'd come to visit. We always reiterated that he had cancer on his left lung where the pains were, and on one occasion an x-ray was performed, but this didn't show anything. They looked for further signs of infection following his recent hospital admission for the Staphylococcal infection in his blood but found nothing.

Steve was sent away with bottles of morphine each time, and each time the bottle was almost empty by the following morning. We went to our GP in the hope that they could prescribe something stronger to deal with the pain and he was given different forms of morphine based medication, but nothing seemed to touch the pain he was feeling.

Eventually, we managed to get an appointment with one of the oncology doctors, who arranged a CT scan. The pains had now been happening for around three weeks - none of the pain relief had been anywhere near sufficient and the doctors seemed to be shrugging their shoulders and not knowing what to do.

The CT scan showed that the tumour was pressing on nerve entrances, causing the intense pains.

Further medication was provided, and although it helped more than the previous methods, Steve was still experiencing a lot of pain several times a day.

Finally, in October, a routine CT scan was carried out (these pains had been going on since he left hospital in JULY!) and when we met with the oncologist to discuss the results, he could clearly see how much Steve was suffering and arranged for Macmillan to contact him immediately.

We're now in mid-November and the pain is *almost* under control - he has a combination of different drugs to take, and takes a minimum of 2320mg per day in total - some of his drugs are to be taken as and when needed, so often he exceeds this amount.

As I said in my previous post, the upcoming trial drug Steve will be on aims to reduce all symptoms of cancer, so hopefully the pain, fatigue, loss of appetite etc caused by the cancer will e eradicated. This is due to start within the next week or two, so I'll do my best to keep up to date with the blog and report back on how it's going!

Lots of love,

Xx

Home, But Not For Long

Getting Steve home in his parents car was a struggle as the operation he had means he can't lay on his back or sit down for at least 4 weeks. He had to lay on his side across the back seats and was in a lot of pain, especially at every turning or bump in the road. We got him home and immediately he seemed more himself. He was so happy to be back home and felt like he was finally taking a step forward.

(This picture is a little something I got for him for when he came out of hospital - nothing special but said just what I wanted it to say, a reminder that I would be with him through all of this. Inside is a little note from me, saying a similar thing.)

It was a worry that his appetite had disappeared so dramatically. We were warned he would lose his appetite quite a bit, but for someone who loves good food and plenty of it, this was actually quite scary. He didn't want anything, just water. I didn't want to force him to eat anything but at the same time, I wasn't about to let him go a week with no food. I figured out that the best way to encourage him to eat was to say "Well I'm making some for myself anyway, so I'll make some extra and it's there if you fancy it." And usually, once it was in front of him, he did fancy it. Yay!

Steve struggled to stand for more than 5 minutes at a time, but the only rest his legs and hips could get was for him to walk (therefore not really rest them at all). We would put a film on which would end up taking 4 hours to watch because of the amount of times we had to pause it for him to get up and walk around, or switch sides because one had become to painful to stay on. It really was hard to see.

The keyhole surgery meant he had no use of his stomach muscles, which until you can't use, you don't realise how much you actually need them for everything you do! Day to day things became mammoth tasks - if he managed to get up and have a shower each morning, that was an achievement. And even though it doesn't seem like an achievement to the average person, I felt so proud of how far he'd come since that Thursday in hospital.

A week after his op, on Thursday 13th September, Steve said this was the best he'd felt - his urine infection from the catheter was starting to ease as the antibiotics kicked in, and I could see a glimmer of his personality coming back to me. Which is why when he got out of bed and his 'behind wound' gushed blood all over the bed, floor and everywhere else, we panicked. It was not stopping, and it looked like a lot. He kneeled down, leaning over the bed and I put a few towels underneath him while I called the ward, who told me to call a district nurse out.

While we waited for her, Steve got back into bed wrapped in towels and the bleeding seemed to stop. He then got up for a shower and it started again. The bathroom looked like a murder scene, there was blood all over the shower floor and up the walls, it was terrifying.

He managed to get back into bed and when the nurse came out, she thoroughly checked him and said she couldn't understand why this had happened. She called out Steve's GP, who insisted that his wound was really infected. An ambulance took us back to hospital, where a different surgeon examined him and said he was absolutely not infected, and that this was completely normal, and even expected. Could've told us that! I thought I was going to have a heart attack!

I took a few of his good friends to visit on Saturday; it was the first time he'd felt up to seeing anyone else. He had a lovely hour with us and hearing him properly laugh again reminded me that it had been a while since he had. Only about 10 days, but he'd laughed so much up until the day of his operation that everywhere felt cold and empty without that sound.

So now it's Monday 17th September and I'm hoping he'll be coming home today. He's been kept in for 4 nights so far, but the bleeding has pretty much subsided and he's been feeling himself again. I can't wait to have him back home again, this is a big house to be completely alone in.