Hi
Looking for advice....
I have just finished treatment following surgery, chemo and am now on Tamoxifen. Whilst a lot of my care has been superb with few delays, there have been areas of problems and I really would like to be able to discuss them with someone. I feel my voice is not being heard.
A lot of my treatment happened in August so I ended up seeing all sorts of different BCN, with no consistency and things forgotten.
After SNB, they had to apologise that they had only just re-evaluated my scan and I would have to have a MX. I was given the choice of whether to continue chemo first then surgery or vice versa.
Saw oncologist who seemed unaware of my choice and launched into 20 mins of why that choice was bad. When got word in edge ways to say that surgery was not possible then, she had to back track but damage was done.
Switched to surgery first but PS not available so used another surgeon for simple MX and asked for delayed recon. After surgery no call from nurse. When I called to have dressing changed was told hospital information wrong and they did not do it, go to GP. GP nurse surprised and said that BCN centre usually sees patients. Was not even asked how I was. At follow up appointment, no mention of prostethis and had to ask. No mention of follow up appointments. In fact they seemed more concerned to get rid of me.
I have managed to get through chemo and see oncologist for follow up. She started talking about a pink form. I look blank and comment that I wanted to ask her about follow up scans. Turns out I should have had this information before.
BCN nurse decides to give me an appointment with PS and books me in with someone I have never seen and not the surgeon I have been under. Ring up and she is on holiday ( She probably needs it with me as a patient.) Appointments secretary swtiches me to correct PS.
To top it all, my GP prescribes tamoxifen and tells me I have to "get on with it" when I worry about hot flushes. Get to a crisis point with fatigue and cannot cope. Talk to another GP who says the sleeping tablets I am on will cause hot flushes, prescribes different. Tells me to get a herbal remedy that is fine to use. ( Oncologist has said not to use herbal remedies). Go to buy it and check with pharmacist. The packets says not to be used by people with my diagnosis!!!!!!!!
Not to mention, two appointment letters going missing in the post and one arriving at 12:00 for a 13:30 appointment. I only attended because I kept ringing to find out when they were.
Apologies for the long post. I now feel that I want to express my concern and anxiety.
+ What else has been missed? I am not trained in breast care so do not necessarily know what to ask. I keep having to think back over every appointment and remember tiny snippets of information that have not been followed up.
+ When my BCN is away, could her colleagues please fill in fully for her. Do they not have check lists for each appointment?
+ Better information for coping with the side effects of Tamoxifen. ( We do not have to cope there is medication.) The BCC helpline nurse was very good and the only person to spend time talking through the issues I am facing.
As a patient, how can I get my voice across without offending the people I need to treat me?
I feel I have a stake in my treatment and also a stake in the NHS as a tax payer. A business would be interested in its customer experience and looking to improve and resolve issues. Why not the NHS?
Thank you for reading!!!
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