The day after I got my results I had an appointment with Dr J. at this appointment I was hoping to get his agreement on starting the new chemo which the Royal Marsden had recommended. After another lengthy debate over the pros and cons of having the chemo we both agreed that we would wait and start my chemo when we both got back from our holidays.
Over the past few weeks I had started to feel a small lump along my scar line which I hadn’t felt before so after Dr J checked it out he said he wanted me to get an ultrasound of it. The following day B picked me up from work and we made our way to the hospital for the ultrasound. Another anxious wait for B sitting in the corridor, was made slightly better when she seen Dr J walking down the corridor in his suit. Although she then realised that she didn’t have her usual “going to meet Dr J” make up and dress code on as she misjudged him being at the hospital that day. lol!! I suppose you could say he was handsome but as my Dr and someone who I had many, many debates with he was at times Dr J and other times when he didn’t do what I wanted he was Dr Ballbag! Thank god he found this funny when I did tell him one day I was in foul form.
Well thankfully the ultrasound and biopsy showed fat necrosis which was most likely from scar tissue so we left the hospital relieved of some good news for a change. The following week it was my 38th birthday and my family left to go on holiday to the Lake District. We stayed in a log cabin with a Jacuzzi, went out on the lakes, the kids went Zip lining, we went quad biking, cycling, roller coasting and hill climbing. The weather was great and we had an absolute ball. I wanted to make the most out of the holidays as I knew I was going home to start 3 months of chemo and wouldn’t be up to much the rest of the summer.
On Tuesday 19th July I had to go to the clinic to get my bloods taken. Before you get chemo you get bloods taken to check your liver, kidneys and white red blood cells. That day was a lovely summer day and my husband was having wine with his dinner. I was sulking as I couldn’t have wine then we remembered I’d already had my bloods done earlier that day….. Result!!
The next day all geared up ready for chemo no.1 Dr J dropped the bombshell that I wasn’t getting it! My heart sank to the floor once again another debate of the pros and cons followed. I was well aware of the risks of chemo Id had 6 cycles of it before I was not putting myself through 3 months of chemo for the sheer hell of it. I wanted to give myself every opportunity of getting rid of every single cancer cell that might still be straying in my body and I would question anybody that says they wouldn’t do the same. This wasn’t a choice about having a flu jab or not this had the potential of stopping me from progressing to Stage 4 cancer in the future the risks associated with having chemo were well worth it.
Leaving the hospital that day I realised that I may have to change doctors. As much as I had built up a rapport with my Dr and would hate to have to start again with a new Dr I was adamant that I was going to have this chemo and if that meant going elsewhere well that’s what I would have to do. I rang and left a message for Dr J to ring me after clinic. I was gutted to say the least I thought I had got over the last few months of arguments when my BRCA result had come back positive. Later when Dr J rang me I just said straight to him that if he wasn’t comfortable with me starting the new chemo then he could refer me to someone else and that there would be no hard feelings on my point. He agreed to take it to his MDT the following day and get his colleagues opinions and would ring me after. That night I was so downhearted I always made sure never to cry in front of the kids or to go to bed or shut myself in my room, however that night I did all three.
The following day he rang me to tell me that the MDT had decided that the chemo would go ahead and that I had to be at the hospital on the Tuesday to get another hickman line inserted and then the chemo clinic on the Wednesday. As I was back to work I busied myself for a few days until D day. Finally I started chemo, yeah!!! 5 months after my mastectomy. I took the next few days off work but went back to work on the Monday as the side effects were bearable. The following week I went to work, however as the week went on I started having headaches a few nights getting into bed around 9 with a scarf over my eyes as I felt it was a migraine type headache and most like a side effect from the chemo. Over the weekend my headaches continued and had started waking me at night. I was taking painkillers every 4 hours so by Sunday I couldn’t stick the pain any longer and rang the Chemo Helpline which gets through to the ward in the hospital, they told me to go to the ward.
I had all my stats taken, bloods taken from my Hickman line and given tramadol. Across the ward from me was a guy under arrest lying sleeping his alcohol fuelled night off him. It made my blood boil to see two police officers having to man him a bed being occupied and doctors time being taken by a man fuelled with alcohol and most likely throwing his weight about the previous night. Later that evening I was discharged with tramadol.
The following morning I received a phone call from the chemo clinic to ask me to go up as the blood cultures had come back from the lab and there was an infection in my Hickman line. At the hospital a Dr from the ward came up to assess me and requested that I be admitted to the ward. They had to get in contact with Dr J to ask if they could remove the Hickman line. Oh my word this is all I needed after all this time of finally getting the chemo I have an infection in the Hickman line if they do not allow me to get another hick man line then my veins are so bad they wont get the chemo in…..no, no, no!!!
The following morning when the Dr was doing his ward rounds he assessed me again. I happened to mention that as well as the headaches I had taken a twitch in my right thumb and my husband had said over the past month or two I had been jerking a lot in my sleep. The Dr ordered a brain CT Scan for later that day but also told me I would be going to theatre to have the Hickman line removed as although the infection wasn’t in my body it was in the Hickman line. Once again I felt like I had been kicked in the stomach I was back to square 1. I was going to have to put up another fight for the chemo. B had brought me more clothes etc. up to the ward so she was there when I got back from the scan. I still hadn’t seen the doctor with the results of my scan when visiting time was over however B told the nurses she was staying with me. A while later I seen the Dr who had instructed to scan. I seen him reading notes and then going into speak to a nurse I was watching them like a hawk. I had done a lot of that over the past year I would watch doctors and nurses body language or facial expressions when they were reading something to see if I could get an inkling of what they were about to say. So when the Dr and nurse came out of the office together walked towards my bed pulled the curtain around and sat down beside me I knew this wasn’t good. He then told me the scan had showed swelling on the brain, which could be caused by an infection however, as my stats were all ok and I was not showing any signs of infection the it was most likely brain metastasis. As this sunk in I remember Barbara asking what as in a tumour? I looked at her and said yes secondary breast cancer in the brain.
Little did I imagine a few weeks earlier when we were having a great family holiday in the lake district that the worst was yet to come……