"Lack of information - feeling ignored"

I attended the women’s day almost a year ago after an urgent referral from a smear test. I had to wait 6 weeks for biopsy results after having to phone several times. I didn’t fully understand until later (my GP gave me more information) that what was found was high grade pre cancerous cells. I was informed after the six weeks that the biopsies taken did not have clear margins. I was told I could go back and have more cervix removed or wait six months to see if it cleared on its own (which I’m led to believe was wrong information). I opted to return and have more cervix removed and was told this would be relayed to my consultant.

A few weeks later I received a phone call from my consultant. I was informed that the type of pre cancerous cells I have are  difficult to find and after discussion, we agreed a hysterectomy would be my safest option and I was happy to go ahead with this. I got an appointment to meet face to face with my consultant and again agreed I would go ahead with the hysterectomy. I was told this would be expected to happen within weeks. I had an ultrasound and my pre op assessments completed but had to wait for over a month to see haematology and wait a further 6 weeks for test results. I have phoned regularly for updates for a date for my operation and getting nowhere. After a further few months, in one phone call I was asked to see my consultant “as a matter of urgency”. I saw the consultant a week later and was informed I should have been recalled within 6 months of my original biopsies if the operation hadn’t happened so that more of the cervix could be removed and a smear test repeated, it was only by chance it was spotted I hadn’t been recalled. As I had complications during the earlier procedure, they won’t remove any more cervix in an outpatient setting. My consultant was also unaware that all my pre op assessments had been completed three months prior.

I’m now fast approaching 10 months since my original urgent referral and no closer to an operation date. I feel like I only get information because I am the one having to chase it. Nothing has moved on in the last few weeks of phoning and the surgeon doing the operation doesn’t appear to be answering emails in relation to this. The worry this has caused is now impacting on my mental health and living with the constant worry and uncertainty is very stressful. In a time when cervical screening is being highlighted as a concern for low uptake rates, it’s concerning that urgent referrals seem to be getting sidelined. As a nurse myself, I know only too well the importance of good communication and keeping patients informed. I wish this was the case for my care. I would certainly appreciate somebody actually speaking to me and clarifying many aspects of my care.