Thursday, 26 November 2009

Here we go.....

Tuesday was a good day, bringing the very best of news: the cancer hasn't spread. It is adenocarcinoma, non small cell lung cancer in its early stages. I met with my specialist cancer nurse, Michael (who is amazing), and the surgeon, Mr Jordan, who is also amazing. After reviewing my PET scan, the surgeon was keen to offer surgery and stressed that this was good, as not everyone is suitable. He told me how it would be: 2 chest drains, central line, catheter, cannulas and an epidural morphine pump; painful, exhausting and hard to breathe. That was on top of the 10% mortality risk. The colour drained from my face and I locked eyes with Jimmy as we both felt horror at what would come if I chose surgery. But the decision was not yet made as he wanted the radiologists to see my scan first, because there was an alternative, and then he would call me on Thursday for my answer.

The alternative was radio frequency ablation (RAF); a much 'simpler' procedure of inserting a needle directly into the tumour and blasting the cancerous cells, plus some extra around the outside, to make sure. A walk in the park, by comparison. But there isn't really that much information about the long-term prognosis with this radical treatment. It sounds almost too good to be true but I do know it has worked, it's just whether it would work for me. Could I risk it? Would it work or leave me vulnerable to the cancer returning and spreading to other parts of my body?

We drove ourselves mad on Wednesday; talking, researching, saying "what if", until we were blue in the face. At bed-time we fell into bed, mentally exhausted, and still hadn't reached a decision, but we slept the deepest sleep since my diagnosis. When Jimmy brought me my morning cup of tea, he sat next to me with such sadness in his eyes and told me that he loved me. He told me he was scared I might die on the table. He told me he was scared that RFA wouldn't work. And he told me that he couldn't help me make the decision because it was happening to my body and he didn't want to see me suffer from an operation when the RFA might possibly work, but that he was scared the RFA wouldn't work and then it might be too late. I hugged him close and said "I know" and we cried.

Mum rang to tell me she loved me and the text messages started to stream in from my friends. No-one wanting to say "go for surgery" because they knew what it would involve and that it would be me, not them, having to do it. I made up my mind and changed it at least 8 times before I got dressed. And then there were my friends on Purplecoo - offering their usual strength and support, along with some sound non-biased advice.

We agreed to wait and see what the phone call would bring, and prayed the decision would be taken out of my hands. My prayers were answered for the second time this week: the first when I prayed it had not spread and this time when the surgeon rang to tell me that the radiologist felt surgery was a better option for me. He felt that RFA could be a "fall back" treatment for the future but should not be my primary treatment, as there was a "better" solution. Good enough for me, thank you.

My surgeon sounded relieved when I said that I was happy to go ahead. He laughed when I told him not to let me down, and promised that he would not. He's one of the best, I know, and I have to let him do his job - not easy for bossy old me, who likes to organise everything!

Before I knew it, my nurse was back on the phone with a date - 4th December. A week tomorrow. This will either be the longest or shortest week of my life, as I get myself ready for what lies ahead. I'll let you know what it was when I come home................. xx

Monday, 23 November 2009

Getting ready to fight......

How to start? I think, deep down, you know, don't you? My recent feelings of living on automatic pilot – that of seeing the world from a distance, hovering on the sidelines and watching as everyone else just gets on with it; living but not quite fully. My worst fears have been confirmed – I do have lung cancer. I don't want this blog to become morose and just a diary of cancer – it is going to be my partner on this journey of downs and ups and I am determined that the ups will win.

On the 10th November I had my CT guided needle biopsy. As expected, my lung collapsed and I had to stay in overnight but was discharged the following afternoon. Back home, I carried on as normal – well, as normal as you can when you just want those results. Like yesterday.

Maybe I did a bit too much but on Monday 16th November, I got back from shopping with sharp chest pains and I could hardly breathe. I rang my GP who called an ambulance and the next thing I knew I was in Gloucester Royal having a chest drain fitted. Nightmare. Absolute flippin' painful nightmare, but the paramedics were cute and knew how to make a girl smile - laughing was too painful, which I found out twice and had to ask them to stop being so nice.

Later, I was safely ensconced in ACU (acute care unit) where my pain was managed with morphine, until my lung started to re-inflate (which was painful in itself). The next morning I was much better and transferred to an ordinary ward for the next 2 days until all the leaked air had been released.

Of course, now I had missed my appointment at the Brompton for my biopsy results and badgered the doctors at Gloucester until they found out for me. To their credit, they were amazing, considering the fact that I wasn't normally one of their patients and the news they had was so bad. I was glad they told me there – if I had gone to the Brompton I would have been alone and had to travel back from London on the train.

Since they discharged me, things just haven't stopped. My family and friends have rallied round and we have sobbed, cuddled and even found the odd laugh. They will get me through this – I can't bear the thought of leaving them and I will fight this.

The battle lines are drawn now and the first one is tomorrow (Tuesday 24 November) when I go for my PET scan to see if it has spread to anywhere else. If it hasn't, I am meeting the surgeon in the afternoon and we will set out the way forward for surgery. If it has, things are another story and will no doubt involve chemotherapy and radiotherapy, and that will be discussed with the rest of the medical team tomorrow too.

So, for the next few hours, I will remain in limbo but I know that my feet aren't going to be touching the ground all too soon, as things begin to happen. The lull before the storm. The advice that has been most consistent is “take it a day at a time”. Simple, true but so very hard to do.