The last time I updated my blog was 42 days ago – the 22nd March 2020, and was my first official day of isolation – lock down – quarantine – whatever you may call it. My text arrived from the NHS saying that I was in the high risk category of severe illness if I should catch coronavirus and to remain home for 12 weeks. That ‘get out of jail’ date will be 15th June 2020. How bizarre this was. It was such a strange feeling knowing you’re classed as vulnerable yet I am feeling well, I feel great in fact but now everything was changing. My life had changed again by things that I had no control over – it was all very surreal.
My sister said ‘We are all riding the same storm but we are all in different boats’. Which is a good way of looking at it. Everyone’s circumstances are different. Everyone copes with their circumstances in their own ways. Many families are in a similar situation to my own and many families have to deal with a great deal more. People have lost family members and have not been able to be with them to say their goodbyes, family members having to move out of their homes as keyworkers so they can continue to work and protect the vulnerable members of their family. It is a different experience of us all.
It is good to see that in times of crisis we see many people at their best pulling together to support one another through this difficult period. I have clapped and cheered, shouted oggi oggi oggi!!, and banged my saucepan for the NHS and other keyworkers every Thursday – like so many of us. It brings a shiver every time and I am proud to stand with my neighbours to say thank you – all be it hanging out my lounge window!
I have only been out twice and both times it was for my treatment – I was so excited! I put on something other than pyjamas or joggers!, put my make up on and even my false eyelashes – all for 2 hours of treatment!! Thankfully I am still able to continue with my treatment and all appears well. The nurses are amazing and keep everyone’s spirits up despite having to wear the protective gowns, masks and goggles.
Life continues as best it can. We are getting used to this temporary new normality. But we mustn’t become complacent. It is now 4 weeks since the lockdown was announced and subsequent extension. I am not a politician, doctor or scientist, and I do not want a debate about the rights and wrongs of restrictions and who or how the rules should be followed – I am an ordinary woman who has been forced in to quarantine with stage IV cancer who wants to live life to the full – as we all do – and not to be restricted to my own 4 walls.
This situation has made me appreciate all sorts of things that I would normally take for granted, even the simplest thing as being able to answer your own front door!
It has come up to that time again – the MRI and PET/CT scans. 3 months goes so quickly! On Monday I get to go out again! This time for my MRI scan in town. I am really grateful that this is still able to go ahead and hasn’t been delayed. The result will follow by a telephone consultation with my consultant. Fingers crossed it will still tell that the tumour is non-active and nothing is happening – Scanxiety has been setting in for the past week or so – and I haven’t been in a great place. This scan will be 9 months after my brain tumour was diagnosed and my gamma knife treatment finished. My Doctor said that 60% of tumours come back between 6 and 12 months. I feel really well with no headaches or dizziness and I am being ‘good’ to my body (apart from flipping sugar!!) so hopefully the scan results will be positive. My PET/CT scan for my body is on the 18th May and again I am hoping for more positive news. I will keep you posted!
I am currently writing this sat in my garden. The sky is blue, the birds are singing, dinner is prepared and I am pretty relaxed (for once!) Today is a good day. I am feeling lucky surrounded by people who love me. So guys, feel blessed, we are safe, we are loved.
2 thoughts on “Checking in”
Hi Ali, lovely to read your blog, so many things ring true for me; I am feeling scaniety too- end of May! I hope we both get some good news. Everything feels very surreal, I have done 7 weeks in lockdown and like you get dressed up for my treatments! I have been going for a sneaky walk at 6am in the morning which is lovely and no people about. Thinking of you Ali, sending love to you and looking forward to being back in the Hub complaining about work!!! Enjoy the weekend and the sunshine, love, Mel x
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My Darling Mel. Hello. I am so sorry I didn’t reply earlier as I have just seen this message. I am about to put an update on. I really hope your scan goes well at the end of the month and you get some positive news. It sure is very surreal. I love getting dressed up for treatment!! Next infusion is on Tuesday and I will have the eyelash glue at the ready!! I am feeling a bit cooped up now – and missing the girls at work. How much longer will this be? But I am safe and well – so that’s the important thing.
How has your treatment been going and what will the outcome of the scan be? Such uncertainity isnt it? My last MRI result showed a 0.5 mm change but they can’t tell me if it is the tumour regrowing or scar tissue. That’s great!! More uncertainty. They will monitor me over the next 3 months and then re-scan. I have no symptoms – no dizziness and no headaches which is good so fingers crossed it is only scar tissue. My PET/CT scan continues to show full metabolic response in my body and no spread to the bones which I was really worried about as I have been having pain in my shoulder joints but that must be down to old age!!! So my plan is carry on like Ive been doing and both scans in August.Take care and stay safe. Lots of love. Ali xxx