"Breast Cancer Treatment and Anxiety"

Back at the beginning of October I found a small lump in my left breast which felt hard and different to normal. The very next morning I phoned my GP for an emergency appointment. It was a locum GP but she was very good, examined me and said I think you need to be referred as an emergency especially as there was a lot of cancer in my family including breast cancer. I was told that I would be seen at the hospital within 7 to 10 days but I would get a letter but would be an idea to phone the hospital to get the date if I wanted to know quicker.

When I phoned the hospital I was actually shocked to find out that the waiting time for urgent referrals was in fact 6 to 8 weeks. This to me was just not acceptable. I was willing to go to either Ayr, Crosshouse or even Irvine.

I was told best thing to do was phone each day in case there was a cancellation as I was able to go with an hour’s notice. This I did, in fact I often phoned twice a day once in the morning and once early afternoon. I also put a complaint in to the complaints department. Eventually I did get an appointment through but it was for about 7 weeks after my GP referred me. I then got a cancellation for a mammogram scan on the Thursday but would have to wait till the following Tuesday to see the consultant to get my results.

I got a letter after I had had my mammogram scan from the complaints department to tell me they had secured an earlier appointment for me which I already knew about, but it was not them it was me phoning the department every day that secured it.

I had already explained on the phone to the appointment department that I suffered from stress and anxiety, especially with places and people I do not know. So the delay was making things a lot worse for me. The staff when I was having my mammogram were really fantastic; they allowed my partner to sit with me just outside the door until they were ready for me. As soon as I was finished they let him know so he could be with me again.

I then had to wait till the following Tuesday to get my results to be told I needed to have a scan done. I was told that there really was not anything to worry about but she just wanted to make sure but the consultant did say it is nothing sinister. So going for a scan was another hurdle I had to cope with but did so although my partner was not allowed down to this area, they did not understand that this was really hard for me.

When they did the scan they said that I would need a biopsy which shocked me as I was told it was nothing sinister. They had a wee bit of a problem getting enough but eventually managed it. I was then told to go get dressed and have a seat again in this area alone and they would bring me my paperwork to me to take back to the consultant. My partner was waiting at the top of the corridor for me and as soon as he saw me he said he knew something was wrong from my face. We went back to the consultant to be told we had to wait nearly two weeks for the results.

Getting the results was not a problem but then I was told I had to wait about 2 weeks to get a MRI scan was a big problem. Going for the MRI I again reminded them that I really suffer with anxiety, and once I got there things only got worse, as I was not told that I would need to have a needle and dye put in. My GP had given me tablets to take to try and calm me down before I went but I was so stressed by this stage.

After a few weeks again I was given the news that yes it was defo cancer and that I had a lump on my lymph glands as well so needed another scan where once again I had to get a biopsy. Again I had to wait for these results. Then finally all information was in and I thought great now I can get on with this and had decided that I just wanted both breasts removed to be told that was not going to happen. I had lobular cancer which is hard to trace and still feel it would have been better just to remove both breasts but my surgeon said no, she was just doing a lump removal and a few of my lymph glands. I was then booked into the hospital for the following Tuesday which would have been early December.

This was two months after I first noticed the lump and only because of my constant phoning and hassling people was I getting my treatment so quickly, which I actually don’t think was that quick anyway.

Hospital – Crosshouse in Kilmarnock day unit. I had phoned before and told them that I suffer with anxiety, but to be honest I don’t think people actually understand what this means. When I got there I was really nervous and once again had taken tablets my GP had given me to try keep me calm. The nurses said that a lot of people are nervous, but sorry anxiety is not just being nervous it is a whole lot more.

I smoke, I never hid this and it was not the time to try and stop or I would have been a whole lot worse. Even the staff when I was having my pre-op said best if I don’t on the day but if I can keep it to a minimum at least. Well I was up most of the night and only had 3 or 4 all night till I got the hospital which I was really proud of.

The anaesthetist came to see me and actually said in a very loud voice, “Are you stupid or something” that was all I needed, I just wanted to go home. I really was not comfortable at all and did not want this anymore. I was scared to be put to sleep in the first place but did not want this man near me. I was told to stop being silly this had to happen. My partner cuddled me and told them to give me space I was having a panic attack, as there was so many people around me by now. He calmed me down and they then gave me some more tablets to calm me down which made me very sleepy. I lay on the bed with him holding my hand. He then went out to have a cig and said he would be back in a min.

They came and took me to have the dye put in but when I came back my partner had gone. They told me he had gone home. I found out later that they had told him I had gone to surgery and he should go and they would phone him later. He never got to say goodbye to me and I had to wait another hour without him before I went down. What if something had happened? This we are both very cross about. I went home that night after my operation as I was not staying there. They really do not understand what it is like to really be scared.

I had problems with the operation as I had an infection and was on loads of strong antibiotics. This went on for a few weeks till I actually ended up in Ayr hospital between Christmas and New Year, again I only stayed in 24 hrs as they don’t understand the difference of nervous and anxiety.

Then was told that they felt chemo would not be a great advantage but I would need radiotherapy which would be up at the Beatson. Again another problem arose. How do I get there, I was too sore to drive, my partner is disabled and could not drive but I also could not get on public transport nor could I afford it. They said that they would provide transport.

Once again I had a problem as the ambulance team told me originally that I was not entitled to use them, that I could use public transport but that would have meant at least a 3 hour journey there and another 3 or 4 hour journey back depending on the time of day, plus I could not get on a bus or train for that length of time. Then they agreed yes, I could get an ambulance to pick me up but I then had a problem to get my partner to come with me as I was told by one person, yes I you have said you suffer with anxiety of new places and people but what is your medical need to have him as that is not a medical reason. Sorry it is. Anxiety is a mental health issue that ruins your life and is made worse with people not understanding it, and the medical staff should know this.

Up at the Beatson they were very good with me, once they understood how nervous and how stressed I was. If there was a long delay they would come out and say why don’t you go for a coffee or something and come back in an hour. The staff were fantastic really can’t fault them. My skin was badly damaged as I knew it would be as I suffer with dry skin at the best of times, and they got the nurse to see to me and there were people I could talk to as well.

At the end of my treatment I was told to see my practice nurse for a few weeks until I healed and that I would be called back to Crosshouse hospital for a review in a few weeks. When I asked how long, I was told it is normally 6 weeks but I’d get a letter before that. It has now been over 10 weeks since my radiotherapy has finished and I have still not heard from Crosshouse. I am still sore, my skin is still not healed and I really don’t know where to go to now.

If I get cancer again I will not be having treatment, as the whole experience for me has been a nightmare.

Sorry this has been so long but really wanted my story out there.