What a truly difficult day today has been. I am so glad to be home in my bed.
I didn’t sleep very well last night as I had the upcoming discussion with my oncologist on my mind. I wasn’t sure how he would react but I knew that he would try to convince me to keep having chemo.
I woke up at 6.30 even though I didn’t sleep until about 1am because my brain was buzzing. I got up at 7am and made myself a juice and then got showered and ready for an appointment at 8.30am with my GP. I truly have a wonderful GP. I told him about my decision and thoughts and reasons why and he said that he completely supported me. He said that he is incredibly impressed with the way that I am taking control of my healing and not just letting myself be pushed into a protocol that doesn’t feel right. He told me that his wife died of cancer 7 years ago and she had the same as me, breast cancer that had metastasised. She went for the chemo but he said that with hindsight, it wasn’t the right decision. He has also spoken to many patients who had chemo and regretted it. He said that my path makes complete sense, to deal with the emotions and my inner world while boosting my body with nutrition and being in control of my treatment. He thinks India is a truly wonderful idea.
I left his room feeling positive and upbeat and marvelling at the universe setting me up with such a fantastically supportive GP.
I was supposed to go and have some blood taken and tests done afterwards. I have just completed various samples for a full range of functional tests to see what is happening in my body. Amongst a huge range of things, it tests my adrenal function and stool tests check for parasites. Stool tests are the most vile, puke worthy experience! I was supposed to do fasting blood tests and realised that I had juiced. So I rang Kim and he said that I needed to fast for 6 hours before they could take bloods. He said to only do it today if I could handle it, if not to go and do them first thing tomorrow. We really want to get the results back before I go to India at the end of the month.
I had a couple of errands to run before my hospital appointment at 11 and so I went and did those and made my way to the hospital. While on my second errand, I wasn’t feeling too great and started to get really hot and clammy. I got a cab and made my way to the hospital for my appointment with the Oncologist. Ioannis was meeting me there as he worked last night and the poor man only got 4 hours sleep.
I arrived at the hospital and made my way up the stairs to the first floor reception and as I got to the top of the stairs, I came over all hot and dizzy and thought I was going to faint. They called me immediately to be weighed and I sat in the chair with my head between my knees, drinking water to try and regain control. I really didn’t feel good but I put it down to lack of sleep and apprehension.
I was called in to see the consultant and again felt pretty ropey as I made my way in. I was cursing myself for not eating and trying to fast for another 6 hours when I had so much to do. I told him my decision and he told me that I was severely shortening my life expectancy by not having chemo. I told him that I appreciated his viewpoint but I have spent a lot of time researching the path that I want to take and am following my heart. I told him that I never wanted to have chemo in the first place but felt pushed down that path by my family and partner. I said that I thought chemo was counter-intuitive in that I need to boost my immune system and the chemo is attacking it. He then tried to convince me that the chemo would not have such a huge effect on my immune system and the drug is quite targeted. I didn’t believe a word of it but was still sensitive. He basically told me that by refusing it, I was signing my own death warrant. He thought my life expectancy would be less than a year without chemo. I told him that I would like to remain under his care and to be monitored and asked when I would have had the CT scan if I was having chemo and he said that it would have been after cycle 3, half way through the chemo. I said that I would like to come and have a scan after I get back from India. He said that they would be happy to keep monitoring me and if I needed anything to just ask.
I came out of there feeling pretty wobbly. I also asked to have my PICC line removed and set about trying to get it done. As time was getting on and I wouldn’t have time to go and eat before seeing Kim, I asked Ioannis to pop home and get my samples for the laboratory and I would go straight there after seeing Kim and get the bloods done. After some toing and froing, I managed to get my PICC line removed, which was quite painful. I was starting to feel really cold and my hands were going numb. I also had pain in my right shoulder, which started during the night but was getting much worse. I felt pretty bloody awful. My sense was that I had gone into shock after actually having the conversation with the consultant and being told that my life expectancy was so short. He was very frank with me and it really landed.
I went down to reception to wait for Ioannis to come and pick me up and I felt very grey. I sat with my head between my knees as I felt so dizzy. I just wanted to go and lay down. I knew I wasn’t going to make it to Kim as I couldn’t sit up. Ioannis carefully got me home and I lay in bed. I was freezing cold and felt shivery and was very, very pale. Ioannis said afterwards that I looked like my body was shutting down. He called me an ambulance. The paramedics came and did some observations. Everything was ok except my temperature, which was a sky high 38.9C. They gave me some paracetomol and eventually I agreed to go to hospital and get checked out. I felt very worried and also felt very strongly that I didn’t want to go and get pumped full of antibiotics, which I didn’t need and secondly would ruin my blood tests. I called Kim and told him what was happening. He helped me to get centred and in my body. To connect with it and listen. He also expressed concern about me having antibiotics. I decided that I would refuse them until they could give me a real reason why I needed them.
By the time I got to the hospital I was feeling a bit better and felt warmer. I really didn’t want to be there. I just wanted to go home and have some food and a sleep. I was taken to a cubicle and asked to change into a gown so that the doctor could examine me. He listened to my heart and lungs and then told me that he could hear something irregular and suspected that I had an infection in my heart valves, which would be very difficult to treat. He wanted to give me antibiotics immediately, which I refused. I said that I wanted them to find evidence that this was the problem before they gave me antibiotics. They told me that if I did have an infection in my heart it could spread quickly to my brain. As you can imagine, Ioannis freaked out about this and was desperately trying to get me to take the antibiotics but my intuition said to wait. It caused a great deal of friction between Ioannis and I, especially as the doctor was trying to get Ioannis to override me and make me take the antibiotics. It was very difficult. They hooked me up to a heart monitor, put a line in and took a load of bloods as well as cultures and a urine sample. They did a chest x-ray as well. They also wanted to send me for an ultrasound for my heart.
Ioannis was really pissed at me and said that I am stubborn as a mule. He said that we need to discuss my decisions and while I agree to a point, our views are polar opposite. I understand how scared he was and how hard it is for him to see me looking that bad, but I know my body and I had to trust my intuition.
After being stuck there for hours my bloods came back fine. My white cell count was in fact very good considering that I have been on chemo, which I believe is down to the juicing and all the food state nutritional supplements that I am taking. There were no infection markers and it turns out that I probably have a virus and need to monitor my temperature over the next few days. I am however very anaemic but not enough to need a blood transfusion. I am so glad that I stuck to my guns and didn’t let everyone bully me into taking antibiotics. It was very difficult to keep refusing the antibiotics when Ioannis was so scared and pushing me to take them.
I truly believe that while I do probably have a virus, it was more of a shock response to the conversation that I had with my Oncologist and hearing those words said so bluntly. I also had had nothing to eat all day and had done too much. I didn’t get home until gone 7pm. I really must try and limit myself to one thing a day. I have to remember that I am not my usual fit, strong self. My body is dealing with a hell of a lot. I have to keep gently reminding myself to step out of the masculine, superwoman energy and step into the gentle feminine energy of self love and just being.
Being a stubborn old mule served me well in this case and while it caused friction (understandably) between Ioannis and I, I am glad that I listed to my body. I feel that this post is quite negative towards the NHS approach and I don’t mean it be, they do an amazing job and save many lives. But they are very blinkered in their thinking and it really takes some guts and determination to stand up to them and say no.
from a very tired and emotionally drained lady, good night.
Love Hannah x