Margie went into hospital a few weeks ago and had an N.J. Feeding tube inserted. She didn't react well with the feed. Margie and her medical team made the decision to end all treatment and for her to go home where she could receive more one-on-one care. She is home now surrounded by her family and a home medical care team, making her as comfortable as possible. We thank you for all your well wishes and we ask for your understanding in respecting our privacy. Margie remains her inspirational self. We are so thankful for her courage and determination and to have this time together. Thank you, Mr. Margie, Mel and Leiny.
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.
I started cycle five of Ramucarumab and Paclitaxol last week. I have three Tuesday's of treatment each cycle with one tuesday off before the next cycle starts. I try to travel each time I have the free tuesday.
In March Mr Margie and I went to Mullaghmore in Sligo for two nights.
We stayed right on the sea, visited WB Yeats grave, and had a look around the shops in Sligo town.
Then after the next cycle I went to London to stay with Leiny. Mr Margie, Leiny, and our friend James, replaced the head gasket on Leiny's Morris Minor and got it back in perfect working order again.
Leiny planted up a mini garden on the gantry. She also gave Maria and I a master class in bread making. After which we took our first visit to the betting shop to back horses in the Grand National. Duane's chosen horse came in second and he won all of seven pounds.
I went back to visit Leiny after the next treatment cycle and travelled alone for the first time since my diagnosis. I was tired but I was so proud of myself. James drove me from the airport to Lein and Duane's, pointing out all the London hotspots, along the way.
Leiny treated me to a Vegan Afternoon tea in a beautiful hotel central London. On another day we took the train out to Crystal Palace to visit my niece Rommeij. We had a very tasty Vietnamese lunch together. I was spoiled for the five days. Mr Margie joined me for the last two nights. The day before we left we met James and Maria at Syon House for lunch and some retail therapy at the garden centre.
Last Monday Mr Margie and I got back from visiting Mel and family in New Hampshire, USA.
We had eleven nights with our daughter, son in law and grandchildren and enjoyed every minute of it.
We had fun by the pool, on the swing,
making towers with blocks, out at the shops,
out to dinner, and out to lunch, or at their beautiful home,
from when we woke up until we went to bed.
Chris's mum and brother visited as did my cousin and his wife and children. It was so lovely to see the cousins playing so well together.
I have contrinued to work part time since February, there just aren't enough hours in the day for me to do the things I want to and as the treatment continues my energy levels are falling. My oncologist is keeping me on the chemo for one more cycle, if I am able for it, then I will have a break from it but will continue on the antibody.
Summer has finally arrived at Chez Margie and the Summer House Mr Margie started last summer is nearing completion.
I plan to sit and craft in it as much as possible, and spend the evenings soaking up the last of the day light, chatting and spending time with family and friends.
Merino cat has been keeping me company and bringing occasional gifts of mice.
I recently went to see the Shaun the Sheep Movie with Mr Margie. It was so funny.
I started a new treatment last week. It's a combination of a new monoclonal antibody called Ramucirumab recently approved in USA. It's not available in Ireland as yet, but my oncologist managed to get it as a goodwill gesture directly from the company. I am also getting a chemotherapy often used for stage four metastatic cancer called Paclitaxol. I have had some minor side effects, fatigue and joint pain, but otherwise getting through it. I will be attending the hospital once each week, and it's a further drive to the hospital as I can't have the new treatment at my local because I am the first person in Ireland to receive it and I have to be monitored by my Oncologist.
On February 1st after a leisurely brunch at Chez Margie, Mr Margie and some of our friends visited Brigid's Well to celebrate the Goddess on what we in Ireland consider to be the first day of spring.
We also managed to get in a spot of retail therapy at Kildare Village, in my fav Joules shop. I also returned to work part time and am really enjoying flexing my professional brain again. Due to my treatment I am not meeting with groups or the general public.
I continue to enjoy making raw vegan cakes and made this strawberry "cheesecake" for Valentines Day.
Last weekend Mr Margie and I joined our friends for a visit to Burtown House near Athy, County Kildare to see the snowdrops.
While I enjoyed the snowdrops and the aconites, I think the hellebores stole the show.
I am a community worker I was working full time until my cancer diagnosis in October 2013. I have been interested in crafts all my life. I am always knitting or sewing. I love the different seasonal crafts and spending time with family and friends.