"My experience of not being listened to"

I have been a patient with University Hospital Sussex since April 2021 under the care of Urology. Surgery, ongoing monitoring and well cared for referred to Medical Oncology December 2023 cared for and monitored by my consultant until September 2024, diagnosed with cancer spread to my bones, advised to commence immunotherapy for trial period.

My consultant left in October 2024, care taken over by a new consultant. I was reassured treatment was the best and continued to have monthly IV immunotherapy at the Chemotherapy unit as well as a daily chemotherapy tablet. All progressed well except I did find the Oncology unit difficult to tolerate each month.

Some staff were excellent at their job of cannulation, but some were less than competent and of course some were training. I do understand staff have to learn but I don't expect staff to turn up and say - oh, I'll have a go. I have good veins but on several occasions  I was stabbed with cannulas more than 3 times before somebody competent would be called to do the job properly. When needles are being stuck into you twice a month the staff should be trained and competent. I found my monthly Oncology unit visit filled with dread. 

My immunology treatment continued and I was reasonably well until February 2025 when the side effects started to make me feel very unwell and my overall condition was deteriorating. Every month at the Oncology unit I would explain how I was feeling sick, sore mouth and throat, no taste, unable to eat and as the months went on I was becoming less mobile and breathless. The staff would listen and give available medication that had little or no effect. I would see my consultant maybe 1-3 monthly OPD my treatment didn't change, the CT scan would continue to monitor the spread of cancer.

July 2025 my condition was much worse, I said to my husband I was dying and the immunotherapy treatment was making it worse. I told the consultant and they said I had to be positive. I wasn't given anything else to combat the side effects and treatment continued! July, August awful condition deteriorating.

September I had a CT scan, how I dragged myself there I really don't know. September outpatient appointment with my consultant. I cried to my consultant and said I was dying, the treatment was making it worse, CT scan no report. They agreed to stop the immunotherapy and oral medication and wanted to commence me on another type of immunotherapy as soon as it could be arranged. I said I was too ill for more immunotherapy and they told me to stop crying - you have to be positive.

I went home feeling relieved to at least stopped the immunotherapy regime I was on with the hope I would start to feel a little better in a few days. I was contacted by Oncology doctor, my CT scan reported a small pneumothorax in my lung, an appointment was arranged with the Respiratory department, I had a chest x-ray, was seen by a respiratory doctor who explained they would monitor the pneumothorax with outpatients appointment in 3 weeks for a chest x-ray hoping it would slowly heal.

All other appointments were cancelled so I contacted Urology Macmillian nurses by email asking if they could clarify what was happening. They were excellent and notified me I had an upcoming OPD with my consultant. I was relieved to see the Macmillian nurse in attendance at the time of my appointment with my consultant. By this time I was extremely short of breath with a very loud bubbly chest. I cried and said I was dying, still my consultant  said - you have to be positive, we will commence you on another immunology regime just tablets. I said I was too unwell to start more treatment, they continued to say - stop crying and be positive. The nurse said - she is saying she is too unwell for more treatment. But I left the appointment after signing the consent forms reluctantly and saying if I didn't feel better I wouldn't have the treatment. I also asked for community Macmillian nurses to help manage my symptoms.

The nurse arranged community Macmillian nurse to contact me the following day, the team was wonderful and arranged for me to go to EACU for investigations of upper back pain and chest infection. I was seen by lovely nurses, doctors, radiographer prescribed antibiotics and sent home. Community Macmillian team contacted me the next day I was still very nauseated and suffering upper back pain. Medication sorted for the weekend to keep me comfortable as possible arranged to meet Macmillian nurses at home.

My breathing deteriorated and I asked my husband to dial 999. The ambulance arrived within 10 minutes, brilliant. I was given oxygen and brought to A&E where I had excellent care from all staff involved - doctors, nurses and radiographers, it really couldn't have been better. I was transferred to Respiritory ward C9. I've been looked after like a queen, seen by the hospital Macmillian nurse, consultants who all listened to me and are sorting out everything so I can go home to die.

My symptoms are now controlled I'm comfortable and can die in peace. My husband and son are fully aware and being supported.

Thank you to all the doctors, Macmillian nurses (hospital based and community) ward C9 is superb and hopefully I will be discharged home with all requirements after 9 months of not being listened to.