Spine problems

The MRI scan has confirmed the spread of tumours in 3 vertebrae. The whole area is fragile, with risk of paralysis of the lower body. Surgery to support the spine is arduous and of limited value given the context. Back to radiotherapy, chemo and a few prayers that my back holds out a bit longer. In Melanie Reid’s Spinal Column in the Sunday Times, she discusses how the thing she would like to change most is not to be incontinent. And here I am, with the Sword of Damocles hanging over me, wondering if and when it will happen. Pain will also become more and more of an issue, and I expect to be moving up from my current combination of painkillers. Whilst trying to be practical, it is hard to contemplate. The level of intervention will keep increasing. My dependency on others will keep increasing. And who will I be at the end? My body will be spent, and my mind suspended above it by painkillers. How limited will my understanding of the world become? Will the times of clarity become shorter and shorter, or will everything be a vague fuzz?
I bought some cuddly toys yesterday. I tried to explain what was happening and the others had to cuddle the toys as I am too tender to touch. Everyone is holding their thoughts in, all wondering what the next weeks and months will involve.

Pain - source unclear

The pain in my left side has still been on the move. Went to the GP to discuss pain relief. Started with cocodamol, 2 four times a day. This didn’t make a significant difference. Then changed to dihydrocodeine; this really helped and at last I could get some sleep. I had been getting very run down with the pain and lack of sleep causing a spiral of negativity.
I have some other painkillers to help with breakthrough pain, but mostly this hasn’t been required to any great extent.
Had the denosumab injection in my stomach. Spoke to the consultant about the ongoing pain; it was felt that was unlikely to be due to radiotherapy by this time, and sent me for an x-ray. Also then had an MRI scan in the last couple of days, of spine and pelvis. Meant lying still for an hour and a quarter - fortunately the painkillers are making me a little drowsy and there are no injections involved so I dosed myself up in advance. No fasting etc required.  I had forgotten about the noise of the MRI machine -  all the beeps and hums and drilling noises. My spine was a little tender from some of the vibrations.
I have spent a lot of the last week in bed, but have got some spirit back. When I walk, there is a painful patch that seems inflexible on my left side to the left of the tummy button. There is some discomfort in my spine and left hip, but much reduced with the painkillers. When I stand in a queue, the discomfort through my back and hip grows. Waiting for the MRI results to try to get a better understanding of the cause of the pain.

Domestic challenges

Ironing, loading the washing machine and washing up are causing problems. I have found that standing and twisting is setting off pain in my hip. The skin in the area that was irradiated has become sore, hopefully it will heal soon. I’m taking neurofen plus intermittently, even though it brings on odd pains in my head. They were scaring me, but as soon as I stop taking it, they disappear. The main gain seems to be a reduction in the tender, bruised feeling; more to do with bringing down the inflammation rather than the element of pain relief. Tiredness is setting in, again due to the difficulty of carrying out basic tasks. I’m fine when I’m sitting down doing something, but shopping, stairs and domestic tasks hurt.

change to exemestane

Aches and pains from radiotherapy are settling down. I’ve kept going to work which has helped keep my mind occupied, and made me keep active. However, on my day off I slept all morning. The oncologist has recommended a change to exemestane from letrozole, so I should get a new prescription soon. Also thinking about changing from ibandronate to denosumab, and starting to talk about capecitabine.

Improving

Even on the first day of radiotherapy, I felt improvements. I could move more freely and start to stand and put weight on my left side without a searing pain sweeping through my hip any more. Day by day, I am feeling stronger. Side-effects are minimal; a couple of times I have taken pain-killers in the evening. That’s less then before. I had a slightly upset stomach a couple of times, but nothing too major, and it could easily have been something I ate.
The pain had zapped my spirit and I lost confidence. Minor tasks had become overwhelming. Now I can do some housework and gardening again, and have the energy to get outdoors, rather than needing to lie down to get some relief from the pain.

Keep calm, grit your teeth, and carry on

This post is not for the faint-hearted. Skip past and tell yourself it can wait for another day if you are not feeling robust.

I am in the throes of depression and confusion.

I knew I would need more treatment for a while, but that little voice of positivity kept me going, saying maybe you’re wrong, misreading the situation. Maybe its nerve pain from the spinal cord compression. Maybe the tiredness is from the pain and radiotherapy. Those sharp pains, they move up my leg, through my hip and towards my spine as the days and weeks wear on; maybe its part of the healing process. The heels are improving; try to be positive. Sitting down takes the pain away; try to be positive. I can get up from an armchair more freely. That’s an improvement.

And then there’s the side of me that wants to be normal - no doctors, hospitals, treatments. Let me do normal things. Let me spend my time at home. Let me be private and shy; don’t make me brace myself to talk about horrible things; don’t let me see the upset on the faces of the people I care about; I don’t want anyone to have to see my body. Please don’t tread on my soul; I want to be left alone.

There is no good answer to the constant weighing up of emotions and practicalities. I will submit to treatment, but it is so hard. I want to be able to say no, but then I’m not alone in this and have to think about the consequences for the people round me.

And yet, ultimately, I am alone. It would be inhumane to try to lean on anyone else. Only I can make these choices.

I slip between trying to act as normal, doing mundane jobs, but then I find myself grinding to a halt, paralysed by my head being in pieces, tossing and turning over all the options. I want to have the energy to fold my life away again, like I did five years ago, but the self-motivation isn’t there. Get rid of the odds and ends that accumulate, tidy my life up. No harm in doing this, whatever. I want to cry, but the grief is too deep. A few tears fall, but they do not begin to let out the sadness.

Last time round, the cancer spread like wildfire. How will it be this time? I can’t take more prozac, that gives me nightmares. I can’t go to the GP; I always come away feeling emotionally bruised.

Keep calm, grit your teeth and carry on. And that is what I will do. I will try to sit in the sunshine. I will perhaps go to see donkeys and be calmed by their gentleness. I will try to do basic housework, as best I can. When the radiotherapy starts, I will be getting closer to the end of that treatment - think positive. Perhaps a bit more time will help me be more robust when decisions have to be made about changing treatments.

I want to sail through, laugh and look after others as if its all ok. I must step out of this grey, shadowy space, and try to feel the daylight in my soul, control my thoughts. Stitch together a reality that side-steps the decay of my body and promotes my identity through my mind and personality.

Scan results, going downhill

Results are through. Spread seen in lymph, left shoulder, and down centre-line of tummy. Some 11mm, some 20mm. Chemo a strong possibility. May change from letrozole. May change from ibandronic acid. The stable situation is gone. Feel that things have entered a new phase of deterioration. Going to have radiotherapy to left hip. Nothing specific identified but symptoms suggest this would be of value.
Got a telling-off for not being a fan of painkillers; it’s just that the ones I’ve had don’t seem to really help, and the side effects outweigh the benefits - messed up digestion and depression. Now I’m in this downhill phase I will have to try to be a better patient and perhaps accept things that feel wrong to accommodate other people’s views, and accept that my judgement is becoming more clouded.

Struggling

Heels are better, hip is worse. Getting worn down by the pain. Had a scan last week. Waiting for the results. Stairs becoming very difficult. Bracing myself for the consultation.

Hips and heels

red admiral

red admiral

Over the past few weeks, my heels have continued to improve. I am now able to walk across the kitchen floor barefoot, without finding it painful. I can get up from a chair without too much of a struggle. At night, I was getting spiky pains in my heels. This has now stopped. Then it moved to my left hip. The pain at night was difficult to deal with. In the daytime, it seemed to ease off when I started moving. It was not in a consistent place. It suddenly got a lot worse after a long walk. I have been nursing it over the past few weeks, and gradually things are improving. Things seem worse first thing in the morning, or after staying still.  It is an odd thing, and it feels like nerves are growing back - is that possible? Areas that were numb on the side of my  hip now have sensation. My spine feels weak but not too bad overall. Today, things have felt considerably better. I’m praying that what I am feeling is due to things getting better.

Finally some sunshine

meadow brown

meadow brown

Day after day there has been heavy rain. Everywhere is damp and muddy. It has been so grey. Maybe finally things are going to brighten up. The occasional butterfly is visiting the garden, but it is a very rare sight this year.