So much happens in a few weeks and it all seems such a distant memory.
The beginning of May for us was so lovely. We spent the weekend with my Ma on the south coast. Kitted out in walking gear Bear had planned us a lovely 5 mile ‘walk’. Hahahahahahaha. I even laugh at it being called a walk. It was beautiful. The weather was on our side most of the time and we had really good fun. All except the hills or mountains, I should call them! Oh my goodness. Such steep hills with crazy deep steps going down and scarily high steps going up the other side. Not once but many! Now I was excited to be doing a nice 5 mile walk. I always expect them to be undulating but this was different gravy. I whined, moaned and gasped my way down and up. My Ma at 67 years old completely fit and didn’t have hardly any trouble at all. Pete, whose heart rate didn’t exceed gentle exercise had to practically coax me up the hills. My heart was going to burst. My lungs were struggling… but I did it. I cried and then I smiled and felt good. It must have done me some good right?
The rest of the weekend was lovely, with lots of laughs, eating Sunday brunch by the beach and then I decided to roller skate along the esplanade. I loved skating as a kid and I thought to myself I want to do that again. How hard can it be? Well it turns out, I needed some practice. As I screamed and wobbled and grabbed hold of walls and lamp posts I realised I must have been pretty good when I was young. After about ten minutes I got the gist of it and giggled and laughed like a child whilst getting a little out of breath. So good, you really should try it.
Since then we have had some wonderful weather. It has actually felt like summer. A bit too soon but very welcome. Pete and I were lucky last weekend not to have any plans. So after our gardening chores we sunbathed on our loungers for the whole of Sunday. It was like being abroad. We felt relaxed and basked in the heat getting a lovely tan. A tan makes you feel a bit better and makes any wobbly bits look better than when they were white! I just thought to myself life isn’t bad right now.
Other than that I have been continuing living my usual daily life. Trying to stay fit and healthy, help Bear where I can and generally trying to stay stress free.
I had my CT and MRI scan at the end of April which in itself should’ve been ok but it turns out that I am getting more sensitive to the contrast they inject. No matter what way we tried I couldn’t help but be sick. They think I have become allergic to it. They have to give me scans some other way I guess. The sickness didn’t last long and I was back home.
The results were given to me at Prof Harris’ clinic on Tuesday this week. Pete and I were there together. Gut feeling was everything should be ok but the cough was a telling sign of possibly something more sinister. Prof started with, ‘there is good news and some bad’. That wiped the smile off my face.
He had bought a student doctor in with him so wasn’t quite the normal ’Prof’ we have come to love. He was perhaps a bit more official and I have to say a bit more doom and gloom than usual.
The good news was that there has been no change in my brain. That means there is still that little tiny blot that looks like scar tissue. No other tumours. There are no new tumours anywhere else. There was no mention of my left lung. The spinal tumours are still sclerotic so causing no problems.
Then the so called ‘bad’ news. The tumour that had been ablated in January had a hole in the middle and looked like it was dying. It is slightly bigger now and the hole in the middle has hardened but the whole tumour is a squishy mass. There are also small tumours in my lymph nodes which were previously subcentrimetre are now about 1.8mm. The problem with them is that one is pressing across my airway causing disruption and the right upper part of my lung has in fact collapsed. Prof proceeded to say that I really ought to get onto chemo, Eribulin, to give it a good going over. He said it has been giving very positive results and one lady said she wanted to go back on it as it had given such remission.
I have to admit, I wasn’t very happy. It actually really scared me. I think because the thought of it affecting my breathing. I know I have another lung but I want this one to get better. The tumour has increased in size slightly to about 5.5cm.
We left having signed paperwork to start Eribulin but on the pretence that I can let the Prof know if I want to proceed or not or in fact head back to Germany.
Bear walked me back to my car and I had a few tears. He told me it wasn’t that bad and we compared that report to the one I got earlier this year. There really hasn’t been that much change but where there has been some nasties growing and causing symptoms we simply have to get to have some serious treatment. I believe Bear and I completely understand. It’s not actually that bad. It can still be reduced. But I got the feeling that I was being told I had done well for the past four years, but now it’s time to have the last go at keeping it at bay. That really scared me. All my fears of dying came flooding back. I simply don’t want to get ill and die. Things are going so well and I really love life and I really love my Bear and my family and my friends and my cyber friends. The support has been just amazing.
I got home whilst Pete went back to work and I emailed the results to all doctors concerned. So far I have still had no reply from Dr Nesselhuts clinic. But Prof Vogl replied immediately. He was more positive. He said there is necrosis in where he treated but there is still some activity. He endorsed us to have Eribulin but I asked if it would be better to have TACE first. It is up to me.
Now I know this sounds terribly stupid because life is life. But I don’t want to have Eribulin right now. I do in one sense, because it is free and it is every three weeks and it is close to home. I don’t because it means losing all my hair again, plus it’s systemic so makes every part of me feel rough. Now I know it is only hair. And if it was my only option then of course. Duh! But if Vogls TACE works and shrinks the tumours again then I can go for Eribulin later. You never know Eribulin could be the drug that really helps me.
So with all that in mind we have booked a visit to Frankfurt in a week or so.
Of course I am gutted. I really hope for a more normal life. And I really want to be ‘free’. And I feel so terrible for Pete. He doesn’t need this pressure and worry either. It’s that reminder all over again. Don’t get too comfortable, it’s not over yet. And quite possibly never will be.
I really felt quite discombobulated by the way Prof Harris kind of had a very negative way of telling me the ‘bad’ news, which we think isn’t really bad news. But this leads me to my friend who having conquered stage four lung cancer all by supplements and the odd drug and has been clear now for one year, found some lumps come up around his collar bone. Of course the immediate thought is cancer and he went to see his doc, who on feeling the lumps immediately blurted, ‘yes that’s cancer’. He hadn’t had a scan or anything. So he had a scan and waited patiently as we do. And during that time he had the most extreme anxiety. Well you can imagine and of course probably know what it feels like.
He returned for his results dreading what he would hear only to find that he is still cancer free and the lumps are simply a mystery. What is wrong with doctors? They revel on telling bad news and scaring the shit out of people.
Well not to bring it down and have a good old moan about the rights and wrongs, today I am back on track.
On Tuesday when I got the results I had a yoga class to attend in the afternoon. In my sad mood I really didn’t want to go but I did and held back tears during times when my eyes were closed. I came home feeling better and gradually have been feeling better by the day. I have this cough that scares me now I know what it is doing. Knowledge can be bad for us at times. But I feel relieved that I have made plans to get to Germany to have TACE with Prof Vogl.
I have to keep reminding myself that ‘ No one said life was going to be easy’ and I know how much of a lucky girl I am in this life, but I just wish they would hurry up and find us triple negative breast cancer ladies a cure or treatment. I have posted many research links on FB. Pete finds things daily. What would I do without him? My One.
So back to business as usual. Keeping well. Staying focussed. Looking for the next big thing and hoping I am well enough to have whatever it may be when it eventually rises to the surface.
There is always hope. Grab it with both hands and keep going…. I plan to.