"My Breast Cancer Journey"

Unfortunately, I was diagnosed with breast cancer at the beginning of 2020 & underwent a lumpectomy, followed by Radiotherapy.

Throughout the whole process, I have felt that the  staff making appointments across all sites did not listen  when I told them my personal circumstances and this meant I kept being given very early appointments that I just could not get to due to having a primary school age child. 

Staff repeatedly  tried to use out of date contact details when trying to get in touch & I felt actually became a bit snippy with me about them having incorrect details, despite the fact that I had provided my current contact details on several occasions.  If the internal systems do not get updated, this is not the fault of the patient.

When trying to book my Radiotherapy, I was repeatedly asked to travel quite a distance from my home, in the height of the COVID19 pandemic, from an area with a very low infection rate, to an area with the highest rate in the county despite the treatment I required being readily available in my home town.  In my opinion consideration was never given to the fact that as a single parent, I could not simply obtain childcare as we were in full lockdown and I was made to feel like the NHS targets were more of a priority to some staff than the welfare of the patient.

During one visit to The Parapet, one of the specialists advised me to give up smoking & they're suggestion was that I go for a long walk & that this hopefully would help me give up - I felt this was a tad naive, unrealistic and frankly insensitive.  This member of staff later insulted me by stating in a letter to my GP that I had taken my daughter along to my appointment - If they had read my notes, they would have been aware that I have a young  son, not a 30 year old daughter as they had assumed because a friend came along to the appointment.  I believe that a little more care, attention to detail & sensitivity is required by this member of staff.

My biggest complaint about this whole process however is the fact that not one of the professionals I spoke to prior to my surgery explained that the incision would be made around the edge of my areola/nipple area.  In all of the literature that I was given by the clinic, the diagrams showed an incision across the fleshy part of the breast & I was extremely anxious about removing the dressings several weeks after surgery as I did not know what to expect - This was not it. I was unable to attend face to face appointments due to the pandemic so feel that I had no practical or emotional support from professionals and when I did call the Breast Care Nurse office with my concerns, they seemed far too busy to talk with me, refused to arrange a district nurse visit and made me feel like I was a bit of an inconvenience.   I now have a permanently deformed nipple where the stitching was carelessly done and I was not given any advance warning, nor any options regarding this procedure.

Furthermore, on completion of the Radiotherapy, staff advised me that the skin around my breast may become dry & itchy during the treatment and for a few weeks afterwards.  This was a complete under-statement. My nipple was essentially burnt to the extent that it went black, itched like crazy and all of the skin peeled off over the course of a couple of weeks, which was extremely uncomfortable, embarrassing and has in fact left me with blocked ducts and unsightly cysts all over my nipple that discharge white gunk. Given that I had ductal carcinoma, this has left me with more concerns about regrowth. 

I felt quite let down at times & strongly feel that staff should explain all of the gory details of the surgery & treatments to the patient - The lack of information caused me shock, anxiety, tears and much distress.  If staff do not feel comfortable explaining these details in depth to patients, I would suggest that they need a new career because to be left not knowing vital details about your breast cancer treatment is absolutely dreadful and has a really negative effect on your already fragile mental health & general well-being.