I need to start by apologising for not writing for such a long time, and for leaving my blog on an uncertain note.
I'm going to pick up where I left off, but it's been a while and a LOT has happened so bear with me!
Steve's lung surgery was a huge success. I went to the hospital with his mum once we got the call to say he was back on the ward, and the difference in him compared to how he was after his last operation was unbelievable and a welcome relief. He was sitting up in bed, with his oxygen mask still on but a huge smile as soon as he saw us. He kept telling me how much he loved me and that all he thought about on the evening before surgery, and on the morning as he was being wheeled down, was seeing my in my wedding dress in 7 weeks time. He was full of all sorts of drugs but was so happy and upbeat.
Two nights later, he was allowed to come home. He recovered very quickly, as luckily the surgeon managed to use keyhole surgery to remove the tumour.
We had 7 lovely weeks leading up to our wedding, and had the most beautiful day imaginable. I'm still on cloud nine when I think about it, despite other things that have happened since.
Steve started to get severe chest pains and a "bubbling" sensation in his left lung around October time, and went to his GP. His GP listened with a stethoscope before promising Steve that if the cancer had returned, he would have been able to hear a blockage when listening, which he didn't hear. He sent Steve away with all the confidence in the world and no referral for further tests.
About a month later, Steve went back with the same pains, but worse. Again, the same GP told him there was definitely no problem and reassured him that the next routine scan would confirm this.
Steve had his next CT scan and we were petrified for results. However, when we saw the oncologist, he said there were two tiny specks on Steve's lung which he believed 99% were scar tissue from surgery. He arranged a PET scan to be sure, but filled us with confidence and told us he truly believed there was no reason for concern. He told us that if the two specks did turn out to be cancer, they would be easily treated with radio-frequency ablation (RFA) and that no further treatment would be required. He also said the pains Steve had would not be cancer related, even if the specks were cancer, because the specks were so minor.
We left feeling extremely positive - the fact that the GP and now the oncologist seemed so confident, especially following a scan, was really reassuring.
However, the PET scan took place and when we walked into the oncologist's office for results, I instantly knew there was something wrong.
When the oncologist asked how Steve had been, and Steve mentioned his chest pains, the oncologist delved a lot deeper and asked lots of questions about where the pains started and finished how often they occurred etc. I got fed up with all the questions - it was obvious something was wrong.
The oncologist explained that the PET scan had highlighted some activity which hadn't been picked up on in the CT scan. The specks were cancerous, but there was more than two. He didn't specify and we didn't ask - he just said "a few".
Steve sat shell shocked, in silence, and I got defensive and went into my usual robot survival mode. I asked what this meant with regards to treatment. I asked if RFA was still going to take place. He told me that ablation was no longer the best option. He said they were thinking of chemotherapy, and that they were thinking maybe a couple of weeks, and they were thinking bla bla bla. Why all the thinking and no doing?! It's an extremely rare occurrence, but I don't mind admitting that I totally lost the plot in the oncologist's office and my voice may have got a little bit louder and angrier than what people are used to. I'm not sure who was more shocked, Steve or the oncologist but I didn't care. This was my family. I told him that if chemotherapy was happening, it needed to happen IMMEDIATELY and that we wouldn't wait any more. I told him that given the damning CQC report on the hospital, I'd have thought this would be obvious. I asked him to look at me and tell me he was genuinely surprised the cancer was progressing given that Steve had to wait two months before each operation. I was greeted with silence, followed by "would you like me to call oncology now and send you down there right away to make an appointment for chemotherapy to start?" My response? "No thank you, because that's not my job, it's yours. Why hasn't it already been booked? You prepared us for amazing news today and now you tell us this, and you haven't even arranged treatment. We're going home, you can book chemo for this week and you can call me and let me know when we need to be here".
10 minutes after arriving home we got a call from oncology explaining that we had to go back the next day for a tunnel line to be fitted into Steve's chest so they could administer chemo this way. Chemo would be the following day, followed by a biopsy of the cancer the next day.
Steve started on Irrinotecan and 5FU, with Avastin, and after three of the six treatments, he had a CT scan to check the progress. He said after his second treatment that the pains and disappeared and that he really felt like it was working. HE WAS RIGHT. The results were amazing - the plan had been to use RFA on any remaining cancer once chemo was over, but he was told during pre-chemo before treatment number 4 that the chemo was working unbelievably well and that they don't even think RFA will be necessary because of how well he is responding. They are confident that the cancer will be gone by the end of chemo, and will do a scan to confirm. If not, they are still happy for RFA treatment to go ahead.
We are absolutely over the moon and are finally feeling confident after the first good scan results in almost 2 years.
That just about brings you up to date... I promise to not leave it so long next time!
Love love love xxxxxx
