A Downer

Well, I wish I could tell you I came home happy and relieved from my appointment but that is not the case.

Firstly, less than twenty-four hours after the fluid was drained, yesterday it started building up again.  As I had my appointment today I phoned the clinic yesterday afternoon to tell them and I was told it would be arranged for it to be drained again whilst I was there today.  So far so good.

I did the journey well.  We get to the breast clinic.  Immediately I am told they are running an hour behind.  Well, I coped with that, especially as I knew I was going to have the fluid drained which would use up some of that time.

Caspar and his team were not on duty today so I am called in to see a different doctor.  She had a look and agreed it was fluid building again.  However she then said she was not prepared to drain it.  I asked why and she said because of the risk of infection.  I pointed out that needles are sterile and there should be no more risk than there was on Tuesday.  She was adamant that she would do nothing and told me to get painkillers from my pharmacy.  I have been living on those bloody things.  They did make me another appointment to see Caspar next Thursday, the Thursday AFTER Easter which is over a week away and he would probably drain it for me.  It could be the size of a bloody football by that time.  As you know there is nobody that can deal with things like this over the Easter break.

So back into the waiting room.  I did bump into my friend Joanne who was in hospital at the same time and had also been in to see this Dr. Robinson. Dr.Robinson needed to be a very important and very special in my life as she has charge of me for the next several weeks.  She is my oncologist. A Cancer patient needs a very good rapport and trust in their oncologist.  My next proper appointment to see Caspar is not until October.  Everyone that was going in was spending 30 to 40 minutes with her.  Joanne and her Mum chatted for a time and then had to leave.  Then the nurse came up to me and said there would be another 45 minute delay.  My nerves were getting to breaking point, the place was emptying out.  People who had come in long after me were leaving and still we sat there.  Came down to just three people waiting so I assumed I would be called fairly soon now.

The nurse came back and said there would be another 45 minute delay.  Thatdid it.  I broke.  I just could not take it. Firstly they had refused to drain the lump and we had been waiting for well over two hours.  I told them I would come back another time, it was way beyond lunchtime, I was diabetic and needed to eat, I had had enough.  They offered me a sweet biscuit!!  I started to cry.  In the end they let me go into a little sitting room where they made me a cup of tea.

Never mind said Mike and Becky, you will be in soon and you can put all the questions to her that you need to ask.  You have got this far and waited this long so get it over with. Caspar had told me that he had discussed my case fully with her, told her I was agoraphobic and suffered from anxiety and panic attacks, she had agreed with him that she would tailor radiotherapy to fit my particular needs (probably not every single day). He told me she was fully informed and would be sympathetic and understanding.

The district nurse who came yesterday agreed my blood sugars were much higher than they should be so I wanted to discuss this with her also on the nurse's advice.

Eventually we are called in.  There she sat with a plate of jam tarts in front of her.  She put a leaflet in front of me and told me all the things that Caspar had already told me, about it being stage two, the lymph nodes not being affected.  She could see I was highly nervous and had been crying so I had expected her to put me at my ease.  The next thing she tells me is that because I had the cancerous lump on the outside of my breast as well, there is a possibility the cancer could return!  Then she tells me it will be four weeks of radiotherapy every day and absolutely no discussion about it and got me to sign the consent form. 

She then tells me that radiotherapy itself could cause the cancer to return in the affected breast.  She asked how painful my chest and breast were and I said at times very painful indeed.  She then said it was because they cut the nerves in my armpits and also in my breast and went on to say that some women never lose this pain and have it for the rest of their lives.  This is all said to someone who suffers from chronic anxiety and she could see I had already been crying.  She wrote out a prescription for the anti-cancer pills which she said I can start next Tuesday in case of any clashes with other pills or bad side effects, best to get Easter out of the way first.

She never looked at me, she spent more time talking to Becky asking how old the boys were and whether they were getting many Easter eggs!!!!  Mike was not even acknowledged or spoken to.  I got the strong feeling that she does not like people who suffer with "nerves".

I was not given the opportunity to discuss whether there was the possibility of any clashes with my other medication or that I was worried about the rise in my blood sugars.  She never looked at the wounds, one of which has not completely healed. She ignored me when I said I had a fluid swelling again. She never mentioned my problems about getting to radiotherapy on a daily basis.  She closed my file, stood up, wished us a happy Easter and that was that. She did say, as we were on the way out, that I would get an appointment for my assessment for radiotherapy in the post but could not say when. We were given about eight minutes of her time. 

I cried all the way home.  I am still crying from time to time.

I got no reassurance, no understanding, was not given time to ask questions that needed to be asked, was frightened by being told the cancer could return as one of the growths had been outside.  This has pushed me right back.

Now I face Easter with the ever growing swelling, the thought in my mind that the cancer could return, not knowing when my assessment will be.  I am not happy, I am not happy at all.

Why I have I decided to write about it?  I promised to share my journey with you and that includes the bad as well as the good.  It is therapy in letting some of it out in writing about it.  However, the peace of mind I had hoped to return with, the understanding I expected to get which would make me feel easier about my coming assessment and radiotherapy treatment did not materialize.  I feel as though I have been hammered into the floor.

So we left here at 10.10 a.m. and returned well after 1 p.m. and to me, the wholething was a complete waste of time.  All that was achieved was that I signed the consent form and was given further things to worry about.

Sorry this has not been a happy entry.  There is nothing I can do except get on with it but right at this moment, I wish I had never gone to that bloody appointment this morning.