Living with inflammatory breast cancer

Watching those blue tits is very addictive! It’s been a welcome distraction with the huge amount of rain we’ve had in the last few weeks, ironically just after drought measures had been introduced. I’ve increased my dose of curcumin, and things seem to keep healing. I’m walking more freely. The heels are a bit of a nuisance in the morning, but I  seem to be getting going a bit quicker. Added a link on the IBC page, from the BBC, saying that a new trial is being run for bowel cancer patients by Prof William Steward, from Leicester University, UK,  because trials in animals using chemo with curcumin were significantly more successful. There are also suggestions that it can helpful for other conditions. I have not experienced any negative side effects. I will watch for more updates with great interest. (http://www2.le.ac.uk/news/blog/2012/may/university-cancer-centre-begins-curcumin-trial)

I had a low weekend, so I had a little extra anti-depressant medication. Suddenly I found my sleep was very disturbed and dreams were very vivid, with me shouting out. I thought about it and realised that my sleep feels shallow and I don’t wake up refreshed, so I have gradually dropped the dose. Maybe I have reached some kind of saturation point?

My sleep has improved. I feel more alert, and perhaps a bit more willing to assert myself. When I feel strongly about something, I have more energy to follow through to try to change people’s minds and make improvements.

Twelve beautiful, perfect tiny eggs in our nest box.

And the first bluebells are coming into flower.

My walking had been getting better, but this last week, things have felt a bit odd. The upper parts of my legs seemed over-sensitive to touch. My hips feel tender. My heels are sore again and I walk like a penguin when I get out of bed in the morning; it is painful to put any weight on my feet and then things settle down a bit. I don’t know which way to read it - is this part of the healing process or are things going downhill?

The weather was glorious last week, bit mixed this week. I’ve been well enough to do some gardening. First thing in the morning, my heels are still very tender to stand on. My hips have also felt a bit sore. Things are so much better, don’t know whether these feelings are temporary.

…Particularly to all mothers fighting IBC. Or any form of cancer. I hope you had a great time with your children on Sunday.

We went out for lunch and had a restful day. I am so much better, getting up and down stairs so much more easily, and being able to bend down. Sleeping at night is much improved - I was starting to sympthasise with the story of the “Princess and the Pea” - the slightest lump or bump in the bed seemed like agony. Thankfully it is hard to remember the sensation of pain. Now the spring is coming. The birds are singing. There is bright sunshine. It is a good time.

Day by day things continue to mend. I am back at work, able to manage stairs, can bend down, can sleep comfortably. All this in a matter of days. It seems too good to be true. My strength is returning; my lower back area feels weak and I have been tired. Went to the onc, and don’t need to go back for three months. No further treatment is warranted at the moment, and the medications stay unchanged. There is an alternative to bondronat which has just gone through trials, which involves monthly injections which was discussed. Similarly, there is one more drug that could be tried if letrozole becomes ineffective. Other than that, it would be chemo.

Day by day things keep getting better. I am walking more evenly. I can vary the position I sleep in. My left hip is still a little tender, and a little numbness in that area. Been for a short drive and that felt fine. Main problem is that my sleeping pattern is all wrong, awake at night, tired in the day. Not sure if it is because the pain increases in the late evening. Haven’t had any pain killers since Saturday.

So the five trips for radiotherapy are done. The clear tape covering the lining-up marks have been discarded. I no longer feel like a target!
The nurses were very caring and considerate. Having been before the whole experience was less frightening, though it is still upsetting waiting amongst distressed people, feeling helpless.
I was taking painkillers three times a day; now it is once a day. I can do the stairs without leaning heavily on the bannister. I can sit up for about an hour but then the achiness gets too much. Bowel movements are less painful, and less constipation. My heels have stopped hurting. Just some aches in my hip and left leg, and lower back. I can put a duvet over me without feeling crushed and uncomfortable by its weight.
I had hoped to work a bit but the two weeks leave is proving to be very necessary this time.
So, things are heading in the right direction. The effects may continue for a few more weeks. See the consultant again in a couple of weeks.

My luck ran out. The day after the scan I got an unexpected call from the onc. Most areas were fine but the spine was a problem. It is crumbling and pushing out towards my spinal cord. So, I’m having 5 sessions of radiotherapy. They did the planning on the same day as the first session. New tattoo on my tummy, with a rectangular target area drawn on. This is starting to help the sciatica pains, and my hip, but is making my lower back tender. Being upright causes fatigue and pain. Bowel movements are also painful. I’m having ondansatron anti-sickness tablets and this is helping a lot. Other than that, a lot of bedrest, mainly because I need to be horizontal. An orthopaedic surgeon may take a look next to see whether to do something invasive.

Been for a CT scan. Had to fast from 8am, just allowed water. At 12:30, started drinking my jug of orange squash coloured fluid. After an hour, got changed for the scan. Had a finger blood test. Then they needed to attach a needle to my hand, to add the second fluid just before the scan. With my hard-to-get-at veins, this did not prove easy. Then was the scan; onto the bed, propped up with a pillow and a foam support under the knees. A few ouches due to sciatica. Then a lining up scan. Then a couple of scans where I had to breathe in, hold my breath, and breathe out, following instructions spoken to me through a microphone. Then a little wait and I could depart. When I got home, had an upset tummy. Now the wait for the results - Scanxiety stage two.