So today was the BIG day… the results day. I coped quite well I think. I didn’t lose any sleep and I didn’t worry myself sick as I have done in the past but my heart rate was definitely higher whilst waiting today, and to make it slightly worse there was a 60 minute delay. Sadly I didn’t get to see Prof Harris today as he was off doing trials and research (I forgive him) but we did see Miranda another oncologist. As lovely as she is she isn’t the Prof. I always feel she is going to give me bad news probably because she always has given me bad news in the past! Poor thing… It was ok though because as soon as we walked in she said, ‘Good news!’ That’s a good start… The scan results were lacking in detail and I have now realised that the sparser they are means they have been reviewed by a certain radiologist. I have checked all my last scans and the ones that are really thin on the ground are by the same one. That’s not a bad thing necessarily. Although I do often feel like I have things unanswered.
I am not sure if the consultants read all prior to scan reports but this time I was told that they had stayed the same since February; that there had been no change. This was ok I guess. But once we had discussed things then left we checked the results ourselves. What it actually says is the following;
The pulmonary nodules remain small and difficult to objectively assess. There has been little change in size. (Now this to me wasn’t great but Pete says that this is great news. This means they must be small. We asked about the necrotic ones but we were told that as it wasn’t mentioned that it can’t be there any more.)
No lymphodenopathy. Wow…. Lymphodenopathy means disease of the lymph nodes. NO lymphodenopathy means no disease present! This is the best news… I had many nodes that were affected by canSer and these were the ones that were growing quite quickly and were the biggest for sure. None… yeha!
Unremarkable liver, adrenals, kidneys, spleen and pancreas.
No bone metastases
This means the canSer hasn’t spread!!
There is no mention of the pericardial effusion (fluid round my heart) so I can only assume it has gone completely! Yeha again!
Ok I have to admit I wasn’t bursting with happiness to begin with. The news wasn’t that ground braking initially but on reading and taking it in the news is AMAZING!
I really had hoped that they would say there was no canSer present in my lungs but I think I’m almost there. I guess what got me down a bit was being told that seeing as the chemo drugs are working and I am tolerating them well don’t rock the boat and continue to take them. I secretly thought I may be able to have some time off it. I know Pete is right when he says if it’s working then we should definitely continue with it but I am worried that taking this kind of extreme drug will be have an adverse affect on me at some point.
The oncologists always say when it doesn’t work anymore then we will look at using something else. They immediately assume that it won’t work and that will ever go away. I so want to prove them wrong. We discussed immunotherapy with the oncologist and she just smiled and said that Prof Harris is interested in immunotherapy for his research but there is definitely nothing in the pipeline for mainstream treatment to include it in the near future. We said it was a shame as it was not only costing us a lot of money but it clearly has so much potential for others to benefit from.
So I leave with mixed feelings… I am overwhelmed and overjoyed at seeing Pete so happy. But I am confused as to whether the oncologist could have given some more detail and told me exact sizes of the lung nodes to know if they really have stayed the same as before or if indeed they have gotten much smaller. I reckon they have. I worry that they will never believe that it has gone and continue to try and get me to stay in the system taking something toxic. And I suppose I really believed it would all be gone by now… I felt it had but now I need to work a bit harder to make it go fully.
I never intended on stopping but I would like to know that I could visit Germany less and have less going on. But Pete thinks whilst it is working that I should crack on really go for it for a few more months at least. I find it tiring going to Germany so often although I am so lucky and really cannot believe I have got the chance to go there for such amazing treatment.
I feel like I want to have life a bit easier for a while. I know it sounds crazy but I do feel like I am having a battle all the time. I want time off… properly. But I wonder if that will ever happen. This is where I need to really embrace life and realise that this is it. It doesn’t get better than this. Life is brilliant and I feel brilliant. What could be better? I want to be a miracle. I want the canSer to be gone completely. Then I will be beaming from ear to ear and doing the running man dance. Maybe my expectations are too high.
Anyway what has put me in the best mood is seeing the overwhelming support before and after getting the results. It’s incredible the amount of people that have commented on facebook with their words of happiness and love. I really am overwhelmed. That’s the only way to describe it. I want to thank everyone so much for their constant encouragement and words of support. I am driven by it and will continue to work hard. I can feel the positive vibes all the time and I do put my good health down to every single one of them… Thanks for rubbing your crystal bracelets too… I knew they would come in useful. J
So now I can at least relax and let the fear and the unknown go for a while now. I don’t have to go back to hospital for 6 weeks and I just get on with my chemo drugs myself.
In the news today Angelina Jolie has reported to have had an elective double mastectomy after finding out she has the BRCA gene. Her mother died of ovarian cancer. By doing this she has reduced the risk of getting the disease from 87% down to 5%… Plucky lady but a no brainer especially as reconstruction is so much easier at when doing it this way. This kind of news will encourage anyone else who may be in her situation. I would never think twice about it and you never feel less of woman. I only have one breast and I still feel the same. I am loved the same and look the same and that’s without reconstruction.
I had message this morning from one of the ladies from Nicola Jane lingerie asking me if I could be interviews on Radio Oxford regarding breast cancer. Sadly I didn’t get the message in time…. next time…