I have had a tough few weeks, physically and mentally, and emotionally. I got very weak after 16 Taxol treatments and 11 ramucarumab. I was only sleeping for about an hour at a time each night in between recurrent visits to the bathroom, feeling cold and with pains in my legs. I spent a couple of weeks going to doctors and the oncology clinics explaining my symptoms, expecting a resolution but not finding one. It didn't help that my oncologist was on leave either, and my bloods and urine were both apparently within parameters for treatment. I firmly refused treatment and with the help of an excellent oncology nurse I finally was admitted to hospital. At this point I had realised that my ascites had built up and was causing me great discomfort, my weigh had dropped to dangerously low, I was malnourished and weighing 35 kilos.my intestines were not absorbing nutrients and energy.
I was so weak and exhausted, all I wanted was to be left alone to rest. I was fed up answering questions about my symptoms to doctors, nurses, registrars and all to no avail as I had no resolution. I was on a merry go round that was getting faster with no way off. The last thing I wanted were well intentioned family and friends asking me probing health related questions. I tried to let as many people know that I wanted to be alone, resting and recovering. But sometimes with the best will in the world people do not listen and do not hear, instead of me getting what I needed I had to deal with what others needed. I was being offered all sort of help, that I did not want or need and yet what I was asking for I was not getting. I was angry, tired, physically broken, tormented. I can cope with a lot of things but I can't cope with other people seeing me suffering, that is my private space and how I deal with it is very personal and private.
I had numerous scans, X-rays and finally had an abdominal ultrasound that showed the ascites need to be drained. I had a plural drain fitted and both Mr Margie and I learned how to use the bottles at home. I was sent home with some relief only to realise that I still had frequent bathroom visits night and day. I managed a few nights at home and I finally met my oncologist on her return and she arranged a bed for me back in hospital. I met my surgeon the day after and within ten minutes he outlined my problem. He prescribed a codeine phosphate and a bulking fibre and that night I had the first four hour unbroken sleep in weeks, frequent toilet visits stopped, my potassium was low also. I went on six hour infusions of potassium. I also had a urinary tract infection which necessitated iv antibiotics.
I had a quiet private room and it felt like I was where I had to be. The merry go round began to slow down and with my concoction of drugs I slept better and slowly began to feel an improvement. Having the basic care and the head space to reflect and process what I was going through in an environment where I could ask the questions helped me built back my mental and emotional capacity. In the last few days I have recurring heartburn or reflux or whatever it's called post Total Gastrectomy and while motillium helps to prevent it, sometimes it's quite painful, and is in various parts of my upper body, particularly along my shoulder blades and the centre of my back. I met with the dietician and she was very sympathetic and understanding of my diet and way of life. However finding a food supplement without dairy and sugar has been difficult, I have a nutrison peg feed drink that I take orally and that does the trick for me and does not increase the reflux. I know that putting on weight will be slow, as my capacity to eat is poor also. I had some ascites drained last night before I left the hospital as well as having my stitches removed, and hopefully this will improve the capacity to eat. I am so happy to be at home in my own bed, in the peace and quiet, my own boss, in charge of my own merry go round, resting, relaxing, meditating and visualising, all at my own pace.
I have put my birthday celebrations on hold while I am recovering. Thank you so much to everyone who sent cards and gifts.
Thank you everyone who sent me messages of support and love, I appreciate each and everyone of your thoughts. I have been smiling and laughing again, maybe it's the drugs! I had such a giggle at this unicorn in the van pic as it I could easily ask that of my friends or family and they would not blink an eye!
I find Facebook and the blog are the best way of updating people without me having to respond to hundreds of messages, emails, texts and private messages, I just don't have the energy for that.