Stage 3 of my treatment for stomach cancer

It's been a wonderful week, I had so much energy and was in such great form.i went out to our friends house for dinner and was so pleased to be able to eat well and sustain energy during the evening. I was on cloud nine after. I hope you all enjoyed St. Patricks day whether your are home or abroad, I know I did. 

I drove Mr Margie (first time since the surgery to drive) in my Landy, to St Patricks well a few miles away.
The well is maintained by local people and forms a stream that flows off to join larger ones. The farmer whose land the well is on opens the gates to the public for the day,and permits parking in his field. This well probably precedes Christian times. There is a china mug hanging on the tree growing along side it for use by anyone wishing to sample the well water. I always feel there is something very special about wells. There are many sacred wells in County Kildare. The sculpture of St. Patrick at the well site was carved by our dear friend Dick Joynt who passed away eleven years ago. His art legacy is evident in Marley Park, Tallagh Village, Dublin Airport, Along motorways in Wicklow, and in many private collections. He is missed everyday.

On Tuesday I had lots of people visit to wish me luck, being me gifts and chat, the visits were all much appreciated and I am so thankful for your friendship, kinship, support and love. I even went to the pharmacy for my anti sickness meds in prep for the chemo. I also went to the supermarket and the fruit and veg shop in the afternoon. 

I started the third and final stage of my stomach cancer treatment- sandwich or MAGIC therapy. Now that my cancer was taken away at surgery the next step is to make sure no rogue cells were left behind . I will have three 21 day cycles of the triple therapy (epirubicin, cystoplatin and fluorouracil ) to zap them all. The night before I packed my food bag for the morning, and my hand bag with drugs, crafts supplies, and a book.  I started the day off like a chirpy chicken, in good spirits. My mum and I met with the consultant oncologist Alexia, at 9:15 and she outlined the treatment,  and the plan for the next few months. I will have a CT scan in a couple of weeks, and a heart Eco graph soon also. 

By ten thirty I was hooked up to my fist iv hydration bag and I even managed to so some crochet before the chemo drugs were pumped in, all through my port, which makes life way easier. It's funny how I cannot stand having a cannula inserted, it's my pet hate and one of the things that makes me feel uneasy when I have to go to the hospital for admission. 

I began to feel tired, no more chirpy chicken, more a hounded hen, during the last iv flushing and hydration bags around 3:15 and was happy to see Mr Margie arriving in to take me home. I slept solidly when I got home, ate well and slept all night again despite taking the steroids. I am conscious of my food and nutrition again even more so this time as I have mastered my eating without a stomach and need to keep that functioning but also there are many foods that can upset the chemo causing nausea. Balancing the two will provide one of my challenges for the next few months. The other challenge comes from the foreign objects it have inserted in my body. I still have the j tube in for iv feeding should my weigh drop below it's current 39.6 kilos, it has to be cleaned and flushed twice a week. I have mastered the art of that myself. Finding the right dressings proved difficult but it's finally sorted. Since yesterday I have the Fluorouricil 5fu bottle attached  for continuous chemo flow through my port, this is 24/7 for the twenty one days. The bottle is housed in a bag (that's looks like a zippy pencil case I once had) as it is light sensitive. The bag is on a belt which I wear around my waist day and night. All this makes showering impossible as neither j tube or belt and bag, can get wet, so bathing is an event. 

I know that it will all be worth it in a couple of months and I am very honored and humbled by the love and support of my family, friends, neighbours, work colleagues, medical staff, and even strangers. Thank you one and all. 

Big hugs, 

Love Margie ❤️

Ups, downs, and anger

It had been a time of ups and downs. Two weeks ago my blog friend Deborah over at My Moms Work contacted me to say she was in Ireland, as I had missed her a couple if years previously I was determined to meet her. Mr Margie and I welcomed her and her husband Jim to our home after six years of blog friendship. She kept up to date with my cancer and surgery over the blog. We hugged and chatted as though we knew each other all out lives. Deborah took a few minutes to set up my spinning wheel, and had it running smoothly in no time. While she does not have a New Zealand, Ashford wheel she has others and does spinning demonstrations back in the USA. She left me with lots of hugs and a beautiful handknit ring. 

Mr Margie took Morris out from under his cover so Deborah could take some photos and I waved from the bedroom window. 

On the Monday evening I began to feel unwell, and over a couple of hours it steadily became unbearable, dry retching followed and I could bear it no longer, At some point during a sleepless night Mr. Margie drove me to hospital in Dublin. I endured prodding, poking and numerous x rays before Professor Ridgeway came round. He asked me a couple of questions, then held my hand as he explained it was an infection, a minor hiccup on my road to recovery, and he promised he would get to the bottom of it and I would be home in a couple of days. I was home three days later feeling better. 

Thank you everyone who sent me get well wishes, cards, texts, private messages, emails I cannot keep up with the hundreds of wishes,or requests to visit and I do not have the time or energy to reply personally. I will try to explain how important your love and support are to my recovery. 

Mostly talking wears me out, especially if there is more than one person speaking. Also repeating the same story about my recovery or illness is tiring. Sometimes all I want is to not talk about it all. 

I am not the person I was six months ago, I have changed totally and entirely, mentally, physically, emotionally, spiritually, I have struggled through every hour of those six months shaping and reforming this new me. I find it difficult to witness someone seeing me for the first time since this change had occurred, I know this is about the person having to accept the changes, however pity, patronising and condescending attitudes just make me angry. I don't want to be reminded of how I was before as it is painful for me, I don't want to be talked at about how well I look despite the cancer.  I have already come to terms with these changes and I am angry that I had cancer and had to have my stomach removed. However I cannot change that, the only change I can make is in my recovery. Everyday I wake to face my recovery one day at a time, seeing what challenges each new days brings.  I know that this is a new opportunity for me, one which I am not fully aware of as yet, each day a step closer, but every now and then I have flashes of what might be. It is support and love that helps me through the struggle to survive. Your messages of positivity and get well support the stepping stones on my journey. 

Big hugs,

Love Margie ❤️

Feeling the "Love"

I really felt the love for valentines day and during the week with lots of love from across the world, seeing Mel and Chris, Lein and Duane, Isla and Esmé, Rommeij and Rikki over the internet. I had a homemade card from Mr Margie. I got get well cards and drawings, flowers from my aunt in Australia, a basket of flowers from my parents, crocus bulbs from my dear friends and special visits from dear people who have my recovery at their very hearts. I have visitors lined up for next week too. 

This week I met with my Oncologist and my GP, both of whom are very supportive  and understanding.  My Oncologist informed Mr Margie, my Mum and I that since the cancer has been removed the mop up chemo will be tailored especially towards my needs. I will meet with her again in early March to discuss starting date and chemo drugs.  My GP identified my leg pain as L5 nerve memory pain due to the epidural. It will slowly improve and walking and exercising will help. There is a drug I could take but it has side effects and with chemo on the way I prefer not to have more complications. 

As a result of all the love I am improving slightly everyday, able to be up longer and a bit more active and eating a little more also. I am feeling very loved and very proud of myself.

Big hugs, 

Love Margie ❤️

Next steps and update

I had a hospital visit last Friday with the histopathology of my surgery, it showed my cancer is quite advanced, I had a 6 cm tumour and 4 of the 28 lymph nodes contained cancer, so mop up chemo is the next step. I will be starting another three rounds of chemo in a week or two and I am busy everyday at improving my eating, a challenge in itself due to the small amounts I can take and the unpleasant and painful side effects of over eating or being dehydrated. Yesterday afternoon I tried some croissant, only to suffer for the next three hours, pains, sweats, weakness, symptoms of something called "dumping syndrome" apparently these symptoms reduce in the first 6 months to a year after Gastrectomy.

 

 I have not been sleeping too well either, I have had pains in my legs, that woke me up after one or two hours sleep, perhaps dehydration the dietician said, perhaps psychological as a result of the surgery the doctor said, I wondered if it was the result of having the epidural for eight days. All my bloods came back within the normal parameters so not electrolyte issues.  I started taking multi vits two days ago and last night was a good night, no leg pains for six hours and only waking for a few minutes, not the hours of before, so hopefully it was a lack of some trace element. I feel that I have had a move along to a slightly better feeling, so it can only be upwards and onwards from here. 

Big hugs, 

Love Margie ❤️

14 days after surgery

It has been a difficult time for me. I was discharged from hospital on Wednesday and spent three days feeling broken, loosing weight, no apetite and not caring if I lived or died. I was in pain and loosing my fighting spirit. Thankfully will the love and care of my family and friends I am pulling through. I have begun to eat a bit, that bringing it's challenges too. I spoke to Ming, my friend in Singapore,  who has just beat cancer, and he explained the first month after surgery is very tough. he has set up a website with a friend called You Are Not Alone to support stomach cancer sufferers.  Friends and family kindly send me texts and messages of love to keep me fighting. Others sent gifts and cards to bring me along. I am the lucky recipient of a handmade personalised box and card from my blogging friend Julie M, they are so beautiful. Mel sent me a frame with photos of Isla and Esmé, a friend from Dublin sent me a scarf/shawl and a dear friend from Ascot spoiled me with a beautiful CK knitting bag. 

Big hugs, 

Love Margie ❤️

Surgery

On Monday January 20th I underwent a full Gastrectomy. I was five hours in surgery while a team of four surgeons two male and two female performed a procedure called a " Roux en Y" . This procedure entails removing the stomach entirely and connecting the oesophageal tube and the small bowel to each other directly. They took layers of the soft tissue around the stomach also, and both the stomach and the lymph nodes in those layers have gone to the lab for a full historical pathology. I have 23 staples in the vertical incision that runs through my belly button. There is a drain stitched in to the cavity extracting fluid, I had a central line in the side of my neck with five outlets. There were two cannulas in my arms one directly in to an artery. I have a J tube stitched directly in to my small bowel for liquid feeding, I have had an epidural connected to my back which I am hoping to have removed today.

I have started eating soft food since Friday evening having completed an ink test that turned my tongue smurf blue! There have been good moments each time another tube is removed, but there have also been low moments, pain, frustration, and doubt. The team who have been caring for me and I really do mean caring have done an incredible piece of surgery, respected my opinions, held my hand, wiped my tears,and hugged me along every step of the way, and I am so grateful to each and every one of them. The nurses and ward staff too in the main have been incredible in their care. I did have one bad experience but those of you who know me realise that I am not shy in letting someone know that I do not feel respected, or that I am also a member of the team. It has been a powerful experience to share the ward with a group of women, each with their own unique story and on their own journeys, who are funny, witty, and above all understanding of the highs and lows. Mr Margie and I spoke to professor Ridgeway the other evening and his words were inspiring " we are ahead of the game and we intend to stay that way". This morning I have been told that the epidural is coming off and depending on my response I am may be going home tomorrow. 

Big hugs, 

Love. Margie ❤️

Surgery rescheduled

My surgery has been rescheduled to January 20th. At first I was disappointed, then my Dad was admitted to hospital on Thursday so I was glad I am not going in on Monday. He is undergoing tests at the moment. I have another week to eat up lots more vegan and healthy foods.

 

I also want to get a walk in as often as I can, in the woods with Mr Margie and out two black labs Mimi and Matilde, 

Big hugs, 

Love Margie ❤️