Good Friday

A week went by with not another word from my breast cancer nurse. I wasn’t surprised but I was left feeling let down by the system once more. My cancer nurse was of little or no support during treatment, unable to get my MRI scan organised and telling me my tumour was tiny just a couple of millimetres which I knew not to be the case as I could feel it. It was 2cm. She also sat on my bed ten minutes before I went down for surgery and asked if I would be going home that evening, I was rather shocked, she said lots of women go home after lumpectomy. I pointed out I was having a mastectomy.

 As a result, I never had much faith in her since! What I did receive yesterday was a letter in the post from NHS Grampian advising me that my annual check-up appointment had to be altered, and they sent their apologies. My appointment is now on 30^th April, not the end of September. I had assumed that trying to sort out the present issues was extra to the annual check-up and not instead of! So anyhow, I have four weeks to wait before I go back to clinic to try to get sorted with my present issues. It shouldn’t be stressful or a battle getting someone to take you seriously,yet it always is.

I was overjoyed this morning to hear about the new recovery package being rolled out by the government via Macmillan for cancer patients coming to the end of their treatment. I remember the feeling when I was given my pathology results just two weeks after my mastectomy, relieved that I was node negative and no chemo needed but rather shocked and panicked to be told “ Take Tamoxifen for five years and we will see you in 12 months.” Off I went. Sent home to deal with what had just happened, to cope with the loss of my breast, the effects of it all on my husband and children and to let the scars mental and physical heal on their own. With dissolvable stitches I didn’t even need to see anyone to get those removed!

After a few weeks friends have got over their initial shock and offers of help diminish and things for everyone else return to normal. For the cancer patient, things never return to “normal”. We face a sudden realisation of what has happened to you during the whirlwind of the previous weeks and months, worries that the cancer could return and if it does how do you know, at what point do you see the doctor? Concerns about the drugs, is this normal? With no scans other than a breast scan, the mind is left wondering, how do they know the cancer isn’t anywhere else? I was sent home to get on with it with no support or advice what so ever. Given there is no support for the patient, there is clearly none for the husband or children who are naturally affected by their own concerns and fears.

I have seen my GP twice since my surgery and I still feel I am wasting his time and that he doesn’t really understand. His lack of concern regarding a possible genetic link, my daughters now have three generations, four direct blood relatives, affected by cancer, on one side of the family. My doctor said as it was not on my mother’s side it was nothing to be concerned about. The Macmillan genetics book contradicts all that my GP has said. He was also not in any way concerned about the menstrual flooding, despite the Tamoxifen patient leaflet clearly stating you should see your GP immediately with any abnormal bleeding. I had to ask for a blood test to check my iron count which came back anaemic. My blood pressure has never been taken since I left hospital although it was low for a few days after surgery. I have not been told I need any follow up when the iron tablets finish after two months nor to check how the bleeding is.

At that point I turned to the Macmillan on line and phone service. Caring, understanding people who are trained, experienced and brilliant! I was able to speak directly to a nurse who assured me that my concerns about the bleeding and fatigue were justified and that I needed to see my consultant. I wish I had called them before.