Sunday 1st September “One day at a time” I said to myself five days ago when I was diagnosed with oesophageal cancer.
Of course it was a shock - one day at a time is all I (or any of us) have. It’s all we are asked to cope with. Five days have already passed and each has been different. Mostly I have been gratefully aware of being held in the loving embrace of God. But there have been other days of overwhelm, exhaustion and anxiety. Yesterday was one of those. Today I feel almost “normal” with reasonable energy. I was able to enjoy lunch (soft food only!) out with my beautiful dearest friend Anthea. She is my rock of support. We both know it is just as hard for her as it is for me - but in different ways.
We were supposed to be heading off for a two week holiday in Queensland this week, to see family and friends and to celebrate 25 years of sharing a house - and life - together. We weren’t planning this kind of “celebration!”
For my own processing and record I hope to keep track of this journey here on my Blog. I write for myself but if others read it that’s fine. I don’t promise to write every day, though I’d like to, even if it’s just a few lines. Already I’m noticing more intensely things like the singing of a thrush outside the window and the beautifully colourful garden cared by by council staff as we walked after lunch.
Monday 2nd September. This sure is a roller coaster. I've been very shaky all day. However - Had a lovely time with a friend here in the village who knows how to listen! Went out with Anthea for a beach walk and a few bits of grocery shopping. Feeling quite overwhelmed with so many lovely messages of support and how to keep up with any kind of response. The analogy of a swan sailing calmly on top of the water while paddling furiously underneath comes to mind.
Tuesday 3rd September. Today was the day of my CT body scan. Grateful for: *Wonderful to have this facility relatively close to home. (North Shore Hospital). *A lovely nurse Sarah and skilled staff. *Then lunch with Anthea at one of our local cafes and home *to find flowers at our door. Won’t hear results for a week or more. Feeling exhausted now, but peaceful.
Wednesday 4th September. Today is the day we were supposed to be flying over to Queensland. There is a mix of grief at missing our planned holiday, and relief that we are not away from home and all the medical facilities. As always I/we are trusting God’s timing in all of this. I’m finding waiting to hear the results of the scan and plans for treatment very hard. Knowing is easier than not knowing with all the room for imagining. Positive things today: *My niece Nicky calling in. She has been through the serious illness and death of several friends and family members - so she is a very calm and balanced support. *An evening walk round the grounds and meeting Von. *Tony (our village EV cab driver) expressing his concern and saying he would prioritise hospital trips when necessary. *Eating mashed potato and veges for tea!
Thursday 5th September. The beach and the ocean are my special, restorative places. This morning I went for a beach walk in the spring sunshine. In a recent Richard Rohr daily meditation this verse from a hymn was quoted: “Have you ever stood at the ocean with a white foam at your feet, felt the endless thundering motion? Then I say you have seen Jesus my Lord.” Perhaps the language isn’t quite how I’d express it but the sentiment is the same. Creation speaks of God in ways that words often can’t.
The other big thing today was getting a phone call to say I have a specialist appointment next Wednesday. Presumably the specialist is an oncologist. I will receive details by email. This is a relief. Things are moving fast. As well as relief there is a new wave of anxiety - what will be revealed?
Friday 6th September. I’m so grateful for God’s timing. Anthea went to Yoga this morning. I didn’t have the energy to go today. So I was home when Nicky’s husband Matt phoned. Matt is a Vet so knows a lot about medical things. He told me several optimistic things after reading the report from the initial gastroscopy. It really gave me a boost. Then Ant came home having had a very healing time at Yoga. We have a beautiful Yoga teacher who exudes calm and love. So we both had a lift to our spirits today.
This afternoon I got the offical written appointment details. The specialist is an upper GI surgeon so it looks as if surgery will be part of what happens next. After Matt’s phone call I feel much less intimidated about that! Yes wonderful timing of things today. Very grateful.
Saturday 7th September. One highlight today was getting to Spotlight (driven by Anthea!) and stocking up on knitting wool. Sometimes seemingly small things feel like an achievement! Knitting is a useful hobby when you can’t be very active. I think of mum teaching me to knit when I was away from school with bronchitis! Thanks mum!
Another delight was a short walk round the grounds in the evening air, hearing the birds who seem to sing even more beautifully at this time of day!
Sunday 8th September
A tough day. Just watched the PBC church service on YouTube - theme of light and darkness both created good (Geneses 1). Certainly a day of darkness and light for Anthea and me. Darkness as we face into the future and light that we can honestly both talk about our fears and feelings. Light when two very lovely long term friends visited, darkness when recounting the whole story of my cancer making it all seem even more real. These friends (Chris and Margaret) supported us through my cerebral aneurysm 28 years ago. Now here we are again…
Monday 9th September. A lovely day with good energy. We went out in the morning to buy a special cushion to enable Anthea to sit more comfortably which she is having to do a lot driving me round etc. Then on to buy an outdoor reclining chair which she is giving me for my birthday! I’m calling it my “recovery chair”. It fits on our balcony which we will lovely in nice spring weather.
Tuesday 10th September. Felt a bit low this morning after waking about 5am. Early hours of the morning are often the worst time of day! I’m sure I’m not alone in experiencing that. However, I’ve been surrounded by so much love and compassion today - some staff here in the village genuinely caring. Visits from two special people. Thoughtful food from another. Flowers from two others. And of course ongoing beautiful messages and prayers. I am so fortunate to be carried on such waves of love.
Tomorrow is a big day. This is the first consultation with a specialist who hopefully will tell me exactly what to expect in the days ahead.
Wednesday 11th September. Saw a very compassionate surgeon today. But surgery is not the answer. I see an oncologist tomorrow.
Thursday 12th September. My 79th birthday. This is definitely my last earthly birthday. Saw a lovely, compassionate oncologist who agrees that hospice care is the best choice for the time I have left. Chemotherapy would only be a short reprieve and not a pleasant one. Relief that there are no more trips to hospital. Our local hospice is excellent and I have some connections with them already. Anthea and I will travel this path together with God’s grace and strength and the love and support of so many.
Friday 13th September. A mix of feelings today. Relief that we are beyond the “ not knowing” stage and have a plan which feels the most supportive and gentle. Overwhelm at the streams of beautiful messages flowing in. I know people don’t expect replies but I appreciate each and every person and their thoughtful and genuine words. A sense of reality is kicking in as I experience a bit more “discomfort” at the sites of the cancer. I wouldn’t yet call it pain (though the oncologist has prescribed morphine already to have on hand). But the subtle reminders that things are developing are sobering. Even as I grieve so many losses of life “as it used to be”, I simultaneously look forward with anticipation to Life beyond all I can imagine here!
Saturday 14th September, a very unexpected night and day. Intense pain, ambulance call about 11pm. Pain somewhat controlled. Hospice care from now on. On Morphine.
Sunday 15th September. I forgot to update the last entry. It was a bit garbled! Just after writing on Friday evening that I was surprised I had already been prescribed morphine, I found out! The two ambulance women were great and stayed for over an hour getting pain under control. The rest of Saturday is a blur. But now it’s Sunday. A lovely Harbour Hospice nurse came this morning for an hour and a half! Anthea and I both feel very reassured that every detail of care will be provided. I’m even hopeful that I might be “up and about” a bit as the symptoms and pain management are steadily adjusted. Right now I’m sitting in the chair beside my bed, in the sun, having a cup of tea! It is only three weeks since I was diagnosed. So much has happened - and so many very compassionate specialists, ambulance staff, hospice nurse… I am very grateful! I am sad, though, that so many people couldn’t have afforded to pay for a private gastroscopy, which was the turning point for me. There must be hundreds, if not thousands, of people here in NZ, who live in extreme pain, or die, because of the state of our health system. It shouldn’t be this way.
Monday 16th September. Another very full day. It is very busy and demanding when time is (potentially) so short! A hospice doctor and nurse came this morning. Another excellent visit with every base covered re pain control, reviewing existing medication and checking out various end of life preferences. All done with such compassion and no sense of hurry. We both feel supported in every way. I’m only going to be open to having very few visitors - mostly those people already know. I’m not in pain and at present feel reasonably able to focus on details of transferring to Anthea the various things I have been “in charge of” till now. (Well, let’s say we achieved one of these things today!)
