On 5th July 2019 I was diagnosed with a brain tumour. And what a year it has been!! 7 MRI scans, 1 CT scan, 4 PET-CT scans, 1 biopsy, 3 sessions of gamma knife, 4 ECHO scans, 4 cycles of chemotherapy and 16 cycles of Herceptin and Pertuzamab so far. 121 days of isolation. 674 days since I had my last alcoholic drink and approximately one year since I became a vegetarian. WOW!! Quite a year when you write it all down!!
My last lot of scans were in early May and to be completely honest it has been a difficult few months. It is hard not to worry about the what ifs and not to look to the future even a year down the line – no matter now much mindfulness I try and put into practice!! This journey is certainly a roller coaster and you have to ride the ups and downs along the way. Over this lock down period there have been more downs but over the last couple of weeks I have begun to feel a little stonger.
Its hard to share your inner feelings with family and loved ones. They worry enough about you and sharing those inner feelings, insecurities and worries is hard. I struggle because I need to say certain things, have someone to listen to me and not be emotionally involved, to understand what it is like. So I have decided to see a counsellor – someone that I can off-load to without upsetting them. There is nothing wrong with asking for help and to realise that you are not superwoman – you can’t do it all on your own all of the time. And I will come out stronger for it in the end.
I have been experiencing some headaches, light headedness and some disorientation since my last results which showed a change of 0.5 mm and I hadn’t had or noticed any ‘symptoms’ in the previous 3 months. So is it tumour growth, is it scarring or is it just my norm? I have scar tissue in my brain and whilst they have kept it to the minimum by doing the gamma knife there will still be damage around the area of the tumour which can cause it’s own set of issues. That’s the uncertainity – noone can tell me at the moment so my next scans are in August and for the first time I am actually not worried about them at all. I will have a better idea of what I am dealing with and I can move forward. So roll on scan time!!
The lockdown restrictions are becoming less for people in the extremely vulnerable group. I can see up to 6 people socially distanced and in a few weeks I can go back to work and things are returning to ‘normal’. I have been out about 3 times since things are relaxing! It is so strange – for the last 15 weeks all I have wanted to do was to go out etc and now that I can – I don’t really want to!! I’m not worried about catching covid-19 (I never really have been) but my world has been within my own four walls for quite a while now and I don’t know if I am ready to rejoin the world again!!
We have all made sacrifices to keep ourselves, loved ones and the vulnerable protected, and we still are. There is still no cure, no vaccine, but I have to let myself get back into the world, I want to get back to this new normal, with whatever precautions necessary. A little at a time – Stay safe everyone. ❤😷🌈