Mostly Joyful, Surprisingly

IMG_20200824_165211IMG-20200827-WA0028IMG-20200829-WA0001normal faceOne of the many trials of cancer treatment is waiting for scan results. We call this ‘scanxiety’. Scan results can change everything and that’s what happened to me.
In my last blog I was fretting over whether to try a chemo regime to stabilise my lungs and get me a few more months. I was bored and scared and went on at length about being bored and scared.
When the latest scan results came through the whole issue of treatment had become irrelevant. In only a few weeks my lung tumours had progressed significantly but much more seriously my brain tumours were growing and multiplying and generally showing their presence; increased wobbliness and a tendency to fall backwards or lurch around in an undignified manner, visual fireworks and occasional blind or blank spots, headaches and difficulty talking, short term memory issues, shakiness in whole torso, numbness in right leg and foot and pins and needles in parts of face and lips. Nothing too terrible or painful but indicative of things deteriorating fast.
Prof said that if I’d asked him for any more cancer treatment he would have refused. I should come off the immunotherapy infusions and from now on it was all going to be palliative. This meant that he was discharging me from his clinic.
Prof has been my oncologist since August 2015 and we have been through a lot together. He has saved my life many times. I won’t go over it all again. It’s all documented in previous posts from 2015. I was crying, not because of the scan results but rather because I was saying goodbye to someone who has been a very important part of my life.
Of course I asked the question…..how long? Prof said ‘a couple of months.’ I had to ask what that meant.
‘One month and possibly another,’ he replied.
This made Thing Two and me laugh. Why did we laugh? I laughed because I’d asked for clarification of the straightforward word ‘couple’. Thing Two laughed because of his joke!
Prof described a neurological death with my vital functions slowly shutting down. A progressive loss of consciousness over an unknown period. He urged us to clarify my plans and intentions re hospital treatment, hospice at home, hospice care etc. I did this a long time ago.
We went to the canteen and Thing Two loaded me with a cup of tea while she got the prescription. Thing Two tells me that I was sad and tearful and blubbing into a handkerchief. I have no memory of that. It’s important to have people around to tell it how it is. I would have said that I was stoical and strong and dignified.
Everyone else was stoical and strong. Not me, apparently. Back home Thing Two went to talk to Grandma and I had a chat with Thing One on the phone.
Over the next few days things began to dawn on me: no more scans; no more blood tests; no more monitoring of temperature, blood pressure, weight; no more needles; no more long immunotherapy sessions on chemo ward; no more clinics, no more hospital appointments, no more frightening admissions to hospital through A and E; no more interventions; no more uncertainty. All of my drugs (and there are still a lot of drugs) were aimed at keeping me comfortable, pain-free and breathing as well as possible. This was it. The end.
I was overwhelmed by joy, by liberation. That was surprising. I hadn’t realised what a gruelling 16 months……no….five years this had been. All my efforts to recover from primary breast cancer had been exhausting. I had worked so hard to regain and rebuild my life through fitness, new work, new relationships, but the threat of secondaries had never left me. It never does.
The worst had happened but here I was: full of joy!
I had a weekend of laughter, singing, playing noisy board games with the Things and their other halves. The increased steroid dose may have made me a little manic but we had some fun.
Ironically, I am feeling better physically now I’ve stopped treatment. I have a new wonder drug which helps me breathe, unlimited painkillers, I have regained my sense of taste and appetite. My stomach is more settled. The steroids mess with my sleep occasionally but I have plenty of other drugs to knock me out. I’ve just had a week at the seaside in Wales and managed to visit the beach, drink gin and tonic, get clean air through my lungs. I’ve been cared for by a group of people devoted to my comfort. I’m so lucky.
Back in Rugby I have an excellent team: my wonderful Macmillan nurse, a team of district nurses, GP happy to fulfil all of my prescription needs without quibbling. In due course there’s Hospice at Home and then the Hospice itself, either for respite or for THE END.
I am counting down on my tablet to the couple of months predicted by Prof. Today it tells me that 12 days have passed since I saw him and I have 42 days until Death Day.
However, I have things to do and I’m quite certain that I will be here well into 2021. In September my gorgeous other half and I will celebrate three years of putting up with each other’s foibles. (I think he may have more to put up with than me, lol.) We have a number of dates planned, mostly involving picnics with the wheelchair. Thing Two has a very busy time at work over the next few months. Thing One is also flat out at work and undertaking some vital training in October. In November Thing One and partner are moving flat. December is Christmas and I will be required to support Santa Claus in his efforts to visit the 5 or 6 young people who will be here. And it would just be bad manners to die at Christmas or New Year wouldn’t it?
I’m also still working on the book, still attempting (with shaky hands) to crochet the rabbit for my grandchildren. What grandchildren? There may be some one day and they will have a wobbly rabbit with a load of fancy crocheted clothes plus various other items I’ve created over the years. I’ve also discovered a gap in the market for Christians approaching death who want a bit of a challenge in their praying or reading. I’m going to hunt down some texts, verses, stories that aren’t totally CHEESEY. I also have friends going through hard times to support in the best way I can although I’m horribly self-centred these days. Seeing people is very tiring so I’m having to be strict about visits. I can’t cope with more than one person at a time and half an hour max. Not much of a party animal anymore.
What I really want is a great big funeral with none of the Covid restrictions. I want everyone to come (and that means you!) and sing their hearts out to the lovely hymns I’ve chosen.
If Covid messes up my funeral and it’s a sad small affair I want you all (and that means you!) to write letters on proper paper to my daughters telling them how wonderful I was and all the laughs we had together and ways in which I helped you and you helped me. And have a sing and a substantial drink on my behalf.
Pollyanna Moment:
It’s all Pollyanna at the moment for me. I didn’t expect to feel so well nor so happy, nor so loved at this stage. I have a wonderful family and amazing friends and they are all still with me, sending messages and cards and presents and making soup or stews for us and visiting sometimes and understanding when I can’t cope or speak or see them. If I need a silent day in bed I am provided with cups of tea and marmite on toast. It’s all fine. I’m fine. All shall be well.

7 thoughts on “Mostly Joyful, Surprisingly

  1. Pingback: Mostly Joyful, Surprisingly – Live Life Loved

  2. Caroline Clark

    And all manner of thing shall be well.
    Julian of Norwich.

    You can guarantee that I will sing very loudly!

    Very much love xxxx

    Reply
  3. Angela Obrien

    I can honestly say I’m lost for words.
    We met on a make up day all sat round a table with our individual goodie bags being shown how to create eye brows when ours had all fallen out along with our hair.
    I have followed your blogs over the years and loved the way you made a joke out of a bad situation. You are one strong cookie with a zest for life. You have taken everything that has been offered to you to try your best to beat this. And all the horrible side affects that go with it.
    I have been gutted to read this blog and it makes me realise that could of been me. It’s a roll of the dice no one knows who will fall from this terrible disease.
    I have kept you in my thoughts all day and spoken to my husband about how brave you are. Life is very cruel sometimes. I wish you all the best take care.xxxx

    Reply
  4. leanne41

    Okay, after all this time, I have realised our friendship has been built on a lie. Well, not lie exactly, more of an omission. I thought we had a lot in common, i love your company, you never cease to make me laugh but marmite? Really? I’m sorry Edwina but this is just not on.

    I love that you have a new found sense of freedom, are enjoying fresh air and g & t’s (in that order?) and walks on the beach but I hate the reasons behind it. I’m sorry but I do. You are a shining star and your light never dims. You better be here for more than a couple of months! How else am I to try and get past this marmite thing? I need time Edwina, you’re just going to have to give me more time…

    Love you, beautiful lady xxx

    Reply
  5. Pingback: Mostly Joyful, Surprisingly | Is Narnia All There Is?

  6. Carol Nike

    I’m so so glad to have known you. I want to tell you now, not after you’ve gone. We had hoped to get to England this past summer, but now it doesn’t look like an option with Covid restrictions. One day we will catch up, probably on the other side. What joys as we share the amazing things God has done for us. Things we saw here, and all those we didn’t realise until we saw Jesus. Your honesty and openness gives strength to many, including me. I will always be grateful that you were one of my Prayers when I walked through the dark days of my daughter’s struggle with addiction. Trials sure do mold us into who we are. I’m glad you have found joy amongst the sorrow. It is so often the way. May the peace of our Lord Jesus Christ be with you, until we meet again dear friend.

    Reply

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