MarySmith’sPlace ~ #CancerDiary44 – up, up & away – #palliative care

After my last post recording my decision not to go for further cancer treatment I really did intend to post an update a bit sooner than this. I should have remembered the unpredictability of cancer and not made assumptions things would tick over just the same.

The couple of weeks before my last post were busy seeing friends, doctors and the dentist (another emergency – broken filling)! I had an online consultation with the palliative consultant and she changed some of my medication. I’d been on a combination of codeine and paracetamol to try to suppress the constant cough and it was making me feel nauseous most of the time which rather put me off eating.

The consultant prescribed morphine instead, both a tablet and a liquid form. The tablet creates a slow release background dose to provide pain relief, help the breathlessness and suppress the cough and I could take the liquid stuff when required. The pain is something fairly new; a difficult to describe sharp pain along my right shoulder.

Then, the weekend after friends we met in Pakistan thirty years ago came to visit. Usually, they would stay with us and we would never go to bed the same day we got up. This time they booked into a hotel which, although not how I wanted it to be, was incredibly thoughtful. I could come home in the afternoon to have a nap before meeting again in the evening – but my goodness did it not make me feel horribly old to be the person who needed to nap!

Other friends had, unbeknownst to me, had been plotting to arrange a flight for me in a two-seater Piper Pup plane – something I didn’t know was on my bucket list.

Wow! Despite the less than elegant scramble getting in and out of the aircraft, it was absolutely amazing. The sun shone, the flight was stunning and, at the risk of upsetting my friend Beetley Pete, I think it really was awesome. I am so, so glad I went and it happened when it did. I seriously doubt if I’d manage to get in the plane now.

Things went downhill after the weekend. I thought at first it was a result of doing too much and a few days of rest would put me right again. Deciding to have a bit of quiet time, I cancelled engagements, apart from my appointment with the palliative consultant – this time, a face to face consultation. We also cancelled our planned trip to Aberdeen to visit our son at the weekend. That was a good call as it was the weekend of Storm Arwen so travelling would have been a mistake.

Concerned about how breathless I’d become in case there were blood clots in my lungs the consultant organised a CT scan for the next day (the next day!) and upped my morphine.

No blood clots to be seen, which was a relief but nothing else pointed to a cause of the breathlessness. In case it was a return of the pneumonitis, I was put on steroids. Remembering how fast they took effect before I was looking forward to feeling much better after the first couple of doses over the weekend. Unfortunately, I wasn’t.

The GP called me on Monday evening after seeing the scan results and suggested an antibiotic as there was a suggestion there could be an infection. I’m over half way through the course now without any improvement.

I had my first home visit from a Macmillan nurse this week. She further increased the morphine medication, assuring me I am still on a very low dose. We discussed the difficult topics of putting in place DNR (do not resuscitate), which actually isn’t so difficult when you understand your heart stopped because we’re all done here and breaking ribs to re-start it – possibly very briefly – isn’t a great idea.

I have an appointment with the consultant at the beginning of the coming week. I have to say I am very impressed and very glad of the support network which has, seemingly seamlessly, appeared in place.

I’m tired in a way I’ve never been tired before. Chemotherapy made me tired, radiotherapy wearied me deep in my bones but this – this is something else again. In the morning I make and eat my breakfast then go back to bed with a cup of tea. It’s stone cold when I wake up. Talking makes me cough. A short chat on the phone leaves me breathless, coughing and exhausted. I’m a talker – this is hard. I’m hoping further tweaking of the meds will help to relieve some of these symptoms, at least for a while.

I would like to do some writing – there’s still the Goldfish blog to convert into a book and there are poems to be written and edited – but it will depend on my energy levels and focus. I apologise for not reading and commenting on as many of your blog posts as usual. That takes stamina. I will try to respond to as many comments on my blog as possible – it’s always been a cardinal blogging rule for me to engage – but if I don’t please don’t be offended. I’m just a wee bit knackered right now.

The last couple of weeks haven’t been easy, not least getting my head round the fact the increasing amount of medication I’m taking is not going to make me better, but there have been some wonderful highlights which I’ll enjoy remembering.

69 thoughts on “MarySmith’sPlace ~ #CancerDiary44 – up, up & away – #palliative care

  1. Mary my heart goes out to you. So pleased you could get on that amazing flight. And see your friends from Pakistan. You are an extraordinary woman and we all admire you so much. Sending love and kind hugs and hoping that the right meds will help make you feel more comfortable. Marje x

    Liked by 3 people

  2. -grin- going up in a two seater would definitely not be on my bucket list either, but your photos are brilliant, and you obviously had a ball. Husband your energy and use it to enjoy at least one lovely thing each day, no matter how small. -huge hugs-

    Liked by 1 person

  3. I had a lesson in a Cessna for my 27th birthday, but not sure I’d be so brave now. Of course YOU are, and it’s well worth it. Even now I remember every minute. Give yourself all the treats you can cope with – your amazing spirit and beautiful, clear writing deserve them. No need to reply. Hugs xx

    Liked by 1 person

  4. So happy about your visit (even though it wasn’t how you’d imagined) and your amazing experience flying in the two-seater. The views are beautiful. About the pain and increased medication for that, I don’t have words. You are amazing, Mary. I think of you often. Sending love and light. 💗💗💗

    Liked by 1 person

  5. One of my cousins got his flying license a few years back and I flew with him once (he bought a very small part of a plane with some people, as it can be quite costly to fly often to keep up your license otherwise), and it was a wonderful experience (though my cousin’s sense of humour can be a bit of a challenge at times), and I’m happy you did get to go up into the skies.
    You’ve been keeping busy, and although you’re tired now, it sounds as if you managed to do a lot of things. It is good to know you’re having plenty of support. And don’t worry about answering this comment or anything else. Just enjoy the moment. Big hugs.

    Liked by 3 people

  6. My dear, Mary. I’m so pleased you made that plane trip. It looked amazing. What views you had. It must have been an experience like nothing else.
    My thoughts are always with you. As Sally mentioned, I’m grateful that you have a team in place who are looking after you. I only wish I could do more. Something I will always be thankful and grateful for is that our paths crossed and that I was lucky in that I met you in person a few times at the Bloggers Bash events.
    And no need to apologise. Get your rest and know that we are all thinking about you.
    Take care.
    Sending you lots of hugs,
    Hugh
    xx

    Liked by 2 people

  7. Your flight story was amazing Mary. Undoubtedly, you have some really cool friends! The photos are excellent – thanks for taking us with you. 🙂 Of course on the flipside, I am so sorry about the fatigue and pain you sometimes feel, I’ve never heard of a morphine pill that is a slow-release pill. Thank you for sharing any and all details that you wish to because others will benefit from your knowledge and openness. That strength and honesty are inspiring. I’m also very glad that you have a strong palliative care team around you. As always, we are thinking of you. ♥

    Liked by 3 people

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