Well, well, well…. I did not expect that.
Today I finally got the scan results from the scans I had a few weeks ago at the Churchill hospital, Oxford.
Actually today has been very good in many ways. I have had many distractions today prior to getting to hospital and also whilst at hospital. This deflected my anxiety and fear that I usually experience.
You know me, always fearing the worst. Well actually I don’t think I know of anyone that doesn’t feel fear when they have canSer and are awaiting results.
When we were waiting to see Prof Harris his secretary joined Pete and I for a little chat. I feel like part of a family there. I know the receptionists well, the secretaries, the phlebotomist and of course the consultants and Prof.
In fact that helped kill the waiting time and before I knew it we were called into see him. At this point I am normally shaking in my boots but there was no waiting time and in came the Prof. He got stuck in immediately with telling me my MRI results. Urgh…
I have been dreading this due to the changes I have been feeling with migraine visuals, the odd weird feeling and nausea, BUT good news. The only remaining tumour that is in the frontal lobe that was ‘gamma knifed’ is decreasing in size. We were informed that this could take three plus months at least to reduce and go. More likely to be six months…. This is a real relief! Thoughts run wild sometimes but it is so good to know!
Then came my CT scan results. They show that everything remains stable. There has been an increase in the largest lesion in my right lung, but I already knew this from having seen Prof Vogl recently. I also have a new enlarged hilar node previously 8mm x 8mm now 19mm x 15mm. The rest of the lymph nodes are subcentremetre.
There are no new lesions anywhere else, including my liver, abdomen and so on. The vertebral lesions are still stable and predominantly sclerotic and of course that annoying broken rib is still showing.
The first thing Pete and I thought was, I had two lesions in the right upper lung. They now only mention the one large one. Does this mean that the two have connected and become one? If this is the case then the increase in size makes a lot of sense and isn’t that great an increase after all. Prof said it is feasible that could have happened.
Also in my last scan they mentioned several new right upper lobe peribronchiolar nodules. These are not mentioned. That doesn’t mean they aren’t there but they certainly haven’t increased if they are there. The hilar node is the newest of them all but this has been large before then it went away.
I have to say overall I am one happy kitten. I was dreading getting the results and definitely feared the worst.
Prof said that with the progression of the right lung what treatment did we propose to do next? So we proceeded to advise him off what I had already had in the last few weeks. He scribbled notes in my ever growing file, of which no treatment is provided by them but hey ho, nevertheless it is still growing.
Prof Harris seemed pleased that my weight had stayed the same. I was weighed upon my arrival today and my weight was 58 kilos, exactly the same weight as last time. He said it was good and healthy. I informed him that I had eaten well over the weekend but I had struggled recently with nausea and eating. I have to admit I am feeling tip top since I have eaten more. I have made such a conscious effort over the weekend to not be bothered by smells and what I eat. Pete has proactively chosen foods that will help bulk me up but are hugely nutritious and fresh. I have been really focussing my mind to be able to have a healthier appetite. It’s working! It was helped by going to Borough market in London an shopping for fresh foods last weekend.
So what’s next?
Right now I am really happy. I am relieved and have to remember that I have got to crack on and work harder to really get this reducing and going. My Mr Motivator (Bear) was giving me a pep talk on the way home and I am once again all fired up. Not that I wasn’t but it is good to hear it from someone else too.
It was really good to see the Prof. He seemed so positive and asked ‘how long has it been now?’ I told him 3 years since I was told it was incurable. He blurted, ‘not by me!’ and in September 5 years since I was first ever diagnosed with breast canSer. Seeing his secretary too was lovely. She was so kind and said that she is really behind me in everything I do. She says that she often sits saying, ‘Go on Claire you can do it’. This makes me smile. How nice it is that people support me. I know I am not alone and I never feel alone. Thank you everyone!
Prof informed us that they are going to be holding a nivolumab trial in Oxford! BUT I cannot be part of it. Firstly because the entry requirements are that the participant must never have had immunotherapy before and also it’s for Ovarian canSer. So any ladies reading this in this area with ovarian canSer you may want to be on the lookout or be like me and start poking around and asking your consultant.
This is great news though. This means they really are excited about nivolumab. What we feel now though is what is the next thing? There must be something in the pipeline….. There always is.
My Bear took the news well but he didn’t seem surprised at all. He told me all along that everything would be fine and that the brain was doing fine and that the body is sorting itself out. I told him I didn’t doubt his thoughts but I was so worried because of the symptoms I had been experiencing, especially the head. It’s scary…. He said I must trust the Bear more. Love him.
So what’s next? I have to focus on meditation, yoga, breathing, exercise and visualisation. My mind needs strength. I have to get rid of this cough and sore ribs. That will take time with TACE but I haven’t forgotten my meds and supplements.
Sunday I had a review telephone conversation with a doctor from the Care Oncology Clinic in London. We discussed the tablets they prescribed me back in October. I still take metformin, atorvastatin and mebendazole. I have sent them the results today and await a review of what to change either by increasing, decreasing or changing to other things.
I am also making tweaks to what I currently take supplement wise as I have been recommended a few variants recently. Once I am clear on what I am taking I will let you all know and why. Over the next few months I will be updating my web pages so that you can make your own choices.
In my head right now I am having a little dance. I will get up and actually dance in a mo. Kitchen dancing is my favourite! I am really pleased there were no surprises and that the bad ones are the ones I already knew about.
What dance shall I do? Moonwalk, running man… no, my happy dance! (Ever seen Will and Grace when Woody Harrelson does his ‘happy dance’?) Yep, that’s the one I am going to do myself. I might throw a few other funky moves in there too!
You know this just proves that I am well; I am living, thriving and surviving with canSer. OK I have had some progression and I do still have it in me. But there are improvements in areas and there is a long way until I am clear but if it doesn’t affect my day to day living then I am on doing the best I can.
I can’t wait for the Bear to come home from work and have a cuddle. I’m still going to have a smile on my face. Today is a good day.
Light and Love. X