Portacath in

The portacath was put in place on my right side. This time it is position in the shoulder area. It was done with some sedative injected in the back of my hand, and local anaesthetic where it was added. Took about an hour then stayed in hospital bed for the morning. One stitch to come out in a week. Can shower but not bath with the dressings. A little bit of bruising is showing.

Radiotherapy planning

Unwelcome lumps and bumps have appeared. Radiotherapy going ahead - a patch that hasn’t been done already. Might result in a flare up, or sore throat.

It’s been a while

Finally I’m taking a break from capecitebine, the oral chemo. I was getting used to consuming all the pills. However, it has been leaving me feeling run down - I suddenly get a fit of yawning and my energy levels plummet. My hair has thinned, and my digestion isn’t great.
So there was a scan last week. Quite a challenge to get the contrast in - three different places tried. The results were reasonably positive. The pressure on my spinal cord is reduced, but I knew that anyway as I have been able to manage stairs better and my heels aren’t as delicate. There are other bits and pieces scattered round my body, but generally the chemo has had a positive effect. I could have opted to continue, but felt ready for a break to recharge and not get stressed about medical appointments for a little while.

Prospecting blue tits

The bird box has remained empty. Last week I saw a bird peeping in. Then a couple of days later, he ventured inside. Today there was a pair, and one went in for a while. The weather is still chilly so maybe nesting will be later this year.

Another cycle of chemo is under way. Had a slightly longer break between cycles which helped my blood counts improve. Taking the pills has become quick and straightforward - I take them with food, and a glass of water, but now it’s all very routine and I don’t get worried about it like I did at the start.
I have stopped taking painkillers. I tried a couple of times before, but then had sleepless nights. This time I worked through that, and after a couple of days things settled down. The side effect of constipation has improved. There are mild pains in my spine and hip, but it is worth not having the digestive problems for a while.

Continuing with chemo

Blood results seem to be on the low side, but I’m on to cycle 3, half way. The main issue is lack of energy. Its cold and snowy outside too, so its pretty tempting to stay under the duvet! I’m getting minor indications that I’m being wiped out by the chemo, but it’s all minor. I had a filling last week, but that’s still aching a bit. Dentist said that it was borderline for needing root canal treatment, and I really don’t want to go there if I can help it.

flu jab

Had my flu jab yesterday. Had booked it previously but was cancelled. Feeling a bit off, felt a bit hot and there’s a pink area round the injection site about an inch across. Hopefully this will be all that happens. Heard of a couple of people with flu-like symptoms so thought I’d better not delay any longer.
Now one week in to the second chemo cycle. Finding it much easier to get the pills down - got past the mental block. Now I can use food to get the larger pills down its not so daunting. Been able to rest more and am hoping this will help my neutrophil count, as well as the radiotherapy being further in the past.
Christmas lunch was good - the turkey cooked nicely. The family played games in the afternoon while I rested. My parents came over. Presents included jimjam bottoms, and a wrap to keep me snug downstairs. I’m grateful to have the internet for shopping - busy shops are not my thing. Local supermarkets were crazily busy leading up to Christmas.
When talking to the nurse this morning, she suggested that I get in touch with a Macmillan nurse. I’m finding it very hard to handle the news that my spine is fragile and could become serious at any moment. I cannot go for walks, cycle or swim at the moment and it is very tempting to make every day a duvet day. My positive spirit has ebbed away. Maybe I need help to put my head in the right place.

Started oral chemo

Started taking capecitabine. When the pharmacist came round with the medications in hospital, I wasn’t in great shape. I had had radiotherapy, been sick, felt drowsy, and in the middle of handing over the pills, had the denosumab injection in my stomach. The start date was fairly flexible, so I agreed n Friday. Yesterday, I got all the pills out and felt overwhelmed. Later that day I had another go, writing out a schedule of how many pills are needed at what time. I realised that I had a number of pills that said “as required”, and I couldn’t remember exactly what they were for, so had to call the GP.
Taken the pills today; 6 in the morning. It says to take them with water. Some were quite large so I found this really difficult. But I managed. And it has to be better than having drips etc.
Now I have to see what happens. Will I react. I have reduced my pain relief dosage considerably and feel much more alert. Movement has improvement. My main problem is at night where my mind seems to overreact to every ache and pain, so I can’t sleep, and then everything keeps feeling worse and worse. I have increased the evening painkillers to see if this works.

Radiotherapy to spine finished

Time to kick back and chill, as they say. No more early starts for the hospital, getting up at stupid o’clock while it’s pitch black outside. Grin. Having long lie-ins. Do I need it for the pain; I’m not sure. For my mind to recover, yes. I am drowsy. As soon as I have energy to get up, I do; it doesn’t often happen. I slept in today and missed my morning painkiller. No disaster ensued. They said this week would be worse, but seems like the peak of pain was over the weekend. So I will look to gradually stepping down the pain relief. It will take a few days to reveal whether that is the right thing to do, so I’ll go down the ladder in very small steps. I need to decide when to start the oral chemo too, maybe the end of this week, depending on how things are progressing.
In terms of aches and pains, I’m a little tender on my spine and side, but this is much reduced. When I look down, it seems like my tummy button is positioned towards the right. Walking is easier, and when I get out of bed in the morning movement is more fluid. The use of laxatives is important - constipation seems to increase the pain levels significantly, as if a nerve is being compressed. I’ll find out more as I reduce the painkillers.

Radiotherapy - over half way

What a difference a day makes. With IBC, that can be a positive or negative thing. Today it is positive. I was fortunate to be given radiotherapy so quickly, though emotionally it shook me up. I had one of those moments where I needed to ask whether it was the right thing to continue. When the pain eats away at you, hope also gets etched away. The first day, I felt queasy afterwards and very drowsy - not sure if that was due to overall tiredness. On the second day, I was sick a couple of hours after the radiotherapy, not much, but it came on very rapidly. On the third day, I was sick with a little bile. I increased my anti-sickness tablets on the fourth day, having one before and then two other ones after. This seemed to do the trick.
I have upped the strength of dihydrocodeine. Maybe this is making me sleepy? The pains on my left side, from my ribs down to my leg, seem reduced. In the morning, there is stiffness, but I’m not feeling so much nerve pain dancing across this area. It’s been tough, but maybe things have changed for the better.

michaelmas daisies

michaelmas daisies

Radiotherapy planning

Palliative radiotherapy to thoracolumbar spine planned. Marks made for lining up, ready for next week. Had discussion with onc about the options; hopefully radiotherapy will reduce the pain, and the hope is that capecitabine will reduce pressure on spinal cord. Increasing pain relief medication.