2020 has not turned out quite as planned. A bit of an understatement but not many of us would have seen a pandemic coming at the end of 2019! Like many other support groups with a vulnerable membership, we complied with Government public health guidance and shut up shop in mid-March hoping we could ride the next three months, stay safe and COVID free.
At the end of June, we thought it time for a more detailed catch up and so emailed a few questions to get a flavour of your lockdown stories. All contributors have agreed to their accounts being included in this blog which we have compiled as anonymous entries. Thank you for telling us what life has been like as we move to ‘coming out of lockdown’.
What has happened to you in the last 12 weeks?
'In a strange way, the lock down has been fortunate for me. I have what is termed ‘social anxiety’ which means I can get very anxious when out in public or having to work in an office environment where it is expected that there has to be a certain amount of social interaction. At the end of March, I was furloughed which immediately took away the pressure of having to make conversation with colleagues. It also meant I could stay at home (where I feel safest) apart from trips to do grocery shopping and walking in the countryside once a day for an hour or so. I highly recommend this, and I find it reduces my stress levels considerably. The lock down also gave me the opportunity to review my lifestyle. I realised how much pressure I was putting myself under. I used to present local history talks and much of my free time was spent revising or updating them as well as trying to fit in my walks. Because of the Covid outbreak, many of my talks have been cancelled and I have now decided to cancel the remaining ones for this year and for 2021. I just need to give myself head space as they say!’
rented a villa in Spain for a 4-month winter holiday to get away from the damp cold
UK winter and get plenty of vitamin D instead. Drove down through France
and the ‘Costas’ with some wonderful scenery. The car was packed full
including our dog. Had a very sociable time and played lots of
golf. The week before we were due to return, the lockdown arrived.
Spain was a lot tougher with this than the UK. Good job that we had the
dog as this was one of the few reasons you could go out for exercise. On
our eventual drive home, we didn’t see one GB registered car, just lots of
trucks. Luckily found two hotels en-route and a ferry at Calais, all only
for essential journeys. We had a letter from the British Embassy in
Madrid authorising our trip back to our country of residence. Not one
health check though for us, or for all the East Europeans on the ferry coming
to the UK for farm work! So 4-months turned into a 6- month holiday.’
'I have managed to grow a beard while in lock down, and got a lot of bottle tops [for fundraising].'
How are you doing things differently? Have you taken up a new hobby or learnt a new skill?
‘We go out for walks daily mainly around the sports fields in the area we live. We go into the Hampden Park regularly but it can be quite crowded on fine days. It is always enjoyable to look in the pond to see the birds particularly the pair of swans, Egyptian geese, coots and moorhens. Have been to the seafront once but it was too crowded for enjoyable space retaining walks. However, walks on the Downs have also been very enjoyable. ….. I am reading a lot more.’
Editor’s note: Do look at our April Eastbourne newsletter with Ron’s account of playing cornet and Zoom recordings for Eastbourne Silver Band. Chris and Debbie (the group facilitators) both say they have been cooking more – especially cakes – but family have helped out with the consumption!
What has been happening in terms of your hospital/ GP appointments and follow up? Are you still seeing or hearing from your clinical teams / nurses? Is the contact sufficient?
‘No, but I have arranged a PSA test via my surgery. … the result was OK … showed a low level.’
‘In respect of my cancer, things are positive and the PSA remains low and is not fluctuating dramatically. I had no problem getting my PSA blood test done at the hospital and the appointment with my oncologist was done over the phone. The news was positive but I can’t imagine how terrible it must be to receive bad news this way. It’s bad enough being told face to face. I had an extreme emotional reaction at times to the hormone therapy (over four years ago now) and I wonder if its legacy is affecting me now. On the plus side, it helped save my life and I now have to adjust the way I live to in order to remain positive about my situation.'
‘ ….. I had a blood test at the GP’s to check PSA and testosterone levels. As I am on the STAMPEDE trial this is normally arranged by the hospital and the cancer research specialist nurse. Unfortunately, the nurse wasn’t answering her telephone and there was no means of contacting her, not good. My own GP got the result and just advised that it was in the normal range. Eventually the nurse rang me to say that PSA had gone up from 1.12 six months ago to 2.63 now. I thought anything less than 4 was ok, apparently not anything over 2 is cause for concern if you have already had hormone and radiotherapy. Told to go and have a PET CT whole body scan … So now waiting for the result and hoping that the PC has not woken up again. According to the really helpful specialist nurses at Prostate Cancer UK there are second line treatments of hormone therapy again and enzalutamide or abiraterone, as an alternative to chemotherapy (which I don’t want!).’
Editor’s note: PCaSO campaigns for good GP/primary care knowledge and understanding of prostate cancer. We were relieved to hear the nurse got in touch but what if the patient had not been on the STAMPEDE trial?
What are you doing now we are heading out of lockdown?
‘Not sure. Concerned that as I am over 80, I am concerned about going to the shops. Despite its inconvenience we are continuing to use Tesco Click and Collect; there is always some difficulties in finding slots at a suitable time interval.’
‘I tried being miserable [about rising PSA], but didn’t like it very much! So, I’m doing plenty of exercise every day, dog walking up hill, playing golf, and various gardening jobs that my wife leaves heavy hints about. Plus having my daily aspirin, vitamin C from fruit and vitamin D from the sun. Be good when the Gym & Swim is open again. In the meantime, think positive and stay safe.’
‘… I should have added how important it has been for me to have the support of a partner - it must be terrible for many …. people, (particularly if they are self-isolating) who don't have that immediate support.’
What are you looking forward to most about the ‘new normal’?
‘Being able to visit the family and see our children and grandchildren. The possibility of being able to take a holiday. Go to meetings of groups in U3A. We have done a couple of meetings with Zoom but it is not the same as being at a meeting!’
‘We used masks for the first time when we caught the bus yesterday - not very comfortable and our glasses kept steaming up!’
Thank you once again to all those who have contributed and told us your lockdown stories. We hope it will not be too long before we can see you in person! Photo credits: Chris Cutting
Do keep an eye on the website for meeting
details. We may change the venue for our autumn 2020 meetings.
Albino squirrel in Gildredge Park seen during 'daily exercise'