'I suspect Covid-19 made a big difference to the routine and pattern of my treatment but not to the excellent care I have received'
21 July 2020
Diane Robinson is a representative of Central Healthcare in Scarborough on NHS North Yorkshire Clinical Commissioning Group's Patient Partner Network. In her own words, Diane describes her cancer journey amid the Covid-19 pandemic.
I write as an elderly (74-years-old) but active patient of Central Healthcare GP Practice, Scarborough, who discovered a breast lump while showering one morning.
Thursday March 19: I considered this might be a collection of fluid as I always sleep on that side of the body so waited until bed-time to re-examine myself, but the lump was still there!
Next morning, March 20, I went straight online to see if I could book an appointment with one of the doctors ... I logged on OK but it took me a few moments to realise that the ability to book an appointment online had been suspended, so it was a couple of minutes after 8am before I picked up the phone to dial through to the Practice.
I found the long-winded coronavirus instructions very frustrating and tried to avoid listening to them but no such luck! It was almost 9am before I spoke to a very friendly receptionist who explained that in the current situation on-site 'face-to-face' appointments with the doctors have also been suspended but a doctor would ring me back and speak to me. She assured me that that would happen that day (I wondered when!).
It was just before 10am when the phone rang and Dr Laura Cayley introduced herself to me and sympathetically listened to my story, asked to review my meds while we were on the phone, explaining that it would reduce face-to-face time when we met (a review was overdue, but that actually felt quite surreal) and then offered to see me in the surgery at 10.50am.
I arrived at the surgery at 10.40am. It was strange to see the surgery set out with spacing between the chairs, a barrier of chairs round the reception desk to facilitate social distancing and very few people. I was sad to read the notice informing patients that the hand sanitizing units had been stolen from the walls and asking folk to wash their hands using the toilet facilities. I had some sanitizer in my bag which I used. The surgery has automatic entry doors so I had not had to touch any handles on the way in which I found very reassuring. It actually felt quite scary going into what felt like a high risk area.
Dr Cayley came and escorted me into the consulting room at 10.45am. We hadn’t met before but she was extremely caring and a quick examination of my breast confirmed the presence of a palpable lump and when I left five minutes later things were put in motion for a referral. I know that happened straightaway because, according to my phone, by 11.40am contact with me had been attempted by the NHS referral Unit at York.
We had driven out to Dalby Forest as we both needed some time and space to think. I have visited Dalby Forest all my life. It is one of my ‘go to’ places and always helps me to put things into perspective. I do not get a mobile signal in the Forest Drive and it was after 3pm when we returned home.
Dr Cayley had said I should hear something by Monday or Tuesday, so I had not expected such a rapid response and I didn’t check my phone. However, I hadn’t been home long before I received a second phone call on my mobile from the NHS referral unit and was offered a choice of Breast Clinic appointments at either York or Castle Hill Hospital, again the concern in the appointment clerk’s voice was palpable and I was so grateful that he had tried phoning again. The only appointment for the next week was on Thursday 26 March at 2.30pm at Castle Hill. It was explained to me that once I opted for a specific hospital any future care would continue there. I had to make a snap decision. but am convinced that I made the right one. I decided to take that first appointment.
These are my reasons:-
- I wanted to be seen ASAP.
- I have had lots of dealings with Castle Hill both during my 17 years as a physio at Saint Catherine’s Hospice and also subsequent to my husband’s heart attack. I feel both confident and comfortable there.
- The travelling distance is approximately the same and the journey to Castle Hill over the Wolds is much nicer. Most of my former lymphoedema patients had been treated at Castle Hill and spoke highly of the experience. I had visited the radiotherapy unit there. The state of the art Oncology and Haematology Unit opened at Castle Hill in 2008 (see hey.nhs.uk/queens/)
- Both driving into the city and parking is a nightmare at York. Access to Castle Hill is so easy and we have never encountered parking problems there. The layout is low level with well- spaced units in lovely grounds in a rural setting.
- I have twice visited the Breast Unit at York in the past … but both times a long time ago. Once as I recall from a mammogram for me and the more recent but still some years ago, when I accompanied a profoundly deaf lady with severe mobility difficulties to a recall appointment there. The staff were lovely but the logistics of finding where we were going were not easy!
However, due to postal delays due to the pandemic I didn’t actually receive my appointment letter until 5pm on Wednesday the 25th. I did panic a bit and rang appointments at York at 3pm (our postman is never usually that late!) They were very kind and confirmed that all was in place and gave me all the details I would need if my letter didn’t arrive (lockdown had come into force on 23 March and I didn’t want us to be stopped by police en-route without evidence of medical reason for travel).
However, when it did come, along with it were details of how to register with ‘Patients Know Best’ a digital system set up in partnership with Hull University Teaching Hospitals NHS Trust of which Castle Hill is a part. Amongst other things this provides ‘A secure way to view your hospital letters and appointment details.’ It’s proved to be a real boon over the ensuing months by providing me via the internet immediate printable evidence of appointments made.
My husband drove me through to Castle Hill for my first appointment on March 26. We knew that he couldn’t accompany me into the building because of the pandemic. That was quite hard, but I received such kindly care, compassion and expertise from everyone on the staff. The observance of physical distancing, provision of hand sanitisers and the aseptic techniques used was very reassuring, though the use of full PPE was not in place everywhere at that time.
I was seen by the consultant and then went for mammography of both breasts, and from there to the ultrasound department. where after U/S examination they performed two needle biopsies, one of the lump and the second one of a lymph node in my right axilla to test for any possible spread. In both cases they were expertly carried out and, with administration of local anaesthetic. I was told that it would take approximately two weeks for the histology to be reported on and then sent back to see my consultant. He looked at my mammograms and scans and said that there is an approximately 28-30mm irregular mass in my right breast, the node didn’t look affected to him but it’s good to get it tested. There was nothing suspicious in my left breast. I was asked to go back to clinic which I readily agreed to.
My result’s appointment came through by ‘Patients Know Best’ that evening. It was to be at 11am on Thursday April 9, three weeks to the day since I found the lump. I reckon that’s pretty amazing going!
At this appointment I learn that I do have breast cancer. It is triple negative receptor cancer which meant hormone treatment or chemotherapy to shrink it wouldn't work. So the advice was for surgery to remove it and thus prevent spread. I opted for a Mastectomy with sentinel node surgery. I was told that would be ASAP, hopefully within the next three weeks but nothing was predictable due to Covid-19. I would get little notice so pre-op observations were taken there and then and subsequently phone calls from the pre-op assessment team (nurse and anaesthetist) completed the process, thus removing the necessity for another appointment. It all made sense especially when a further appointment meant an 80 mile round trip. Would it not also make sense to do the same in the future?
On Friday April 18 I got a call to say I was first on the list for surgery on Wednesday the 22nd. Pre-op Covid-19 testing had just been introduced and I was asked to attend for testing at 9am on Monday the 20th and the Department of Nuclear Medicine for Isotope insertion at 1.30pm on Tuesday the 21st and on Wednesday the 22nd at 7am for admission to Ward 16.
Due to the virus this was a temporary mixed surgery ward - normally Urogenital, so the staff were a bit hazy about managing breast surgery cases. It was a busy start to the week. All went according to plan and I was discharged from the Ward at 6.30pm on 22 April with verbal instructions from my surgeon (which I couldn’t fully remember and had to research on the internet when I got home) on how to manage my drain.
As I waited to go to theatre that morning, I received a phone call from my GP promising support. I very much appreciated this and subsequent phone calls from Dr Cayley and other practice members and have felt very supported by both the team at Central Healthcare and at Castle Hill.
All has continued well. I suspect Covid-19 made a big difference to the routine and pattern of my treatment but not to the excellent care I have received under strange, logistically difficult and emotionally testing circumstances. I am very grateful to the wonderful people who are the NHS.