Relaxing by taking control

Although I know I need to learn to step back and not feel such need to be in control of everything, I also maintain I have to take some degree of personal responsibility in relation to my medical care.  I have had my medical notes from the Belfast trust for a while now, but was a little scared to look at them. Last week I got my notes from the Northern Trust too. 

On Saturday, in a fit of bravery, I decided to go through them...... In some ways it was the most heartening and reassuring thing I could ever have done. In other ways it was so frustrating that I want to scream at my oncologist, neurologist and multi disciplinary ‘team’!

Scan results shared between different medical folk as recently as February this year show “an excellent response to Neuro-oncological management”. Why, oh why, would my oncologist or ‘dedicated’ oncology nurse never word it like that to my face?? How can they not know from their years of experience that maybe the patient is scared and needs information delivered honestly, but gently? Do they not know when a patient says they’re fine, that they might actually be lying, and may be just crapping themselves and trying to cover up?? Tell them the truth..... gently......Especially when the news is as good as it can be. I don’t expect miracles (though, as ever, haven’t ruled one out..!), but if I’m responding well then EXPLAIN it to me. The brain tumour hasn’t made me stupid. Don’t patronise me, don’t give me a short shift, don’t rush me. Talk to me. Tell me the truth and give me time to absorb it. Maybe even follow it up with a quick phone call a week or two later? Just to give me time to think of and ask questions? 

If I’d had medical experts in Belfast with any sort of decent bedside manner to begin with then I might not have spent the past 16 months crashing in and out of a Kubler-Ross style cycle of change horrors! 

I am reassured by what I read in my notes. Not just in terms of scans, but also lab results over the past 16 months, and other general notes made. 

My nightmares now continue to lie with the prescription drugs concoction I somehow seem to have managed to get locked into. First I was poisoned through a lack of care over anti seizure medications. Now I’m in the horrors of steroids. I have now been on a steroid called dexamethasone since January 2017. This is a drug that is usually given in short blasts. As a result, I can’t just stop taking it. I have to drop it down slowly. The side effects are awful. And every time I change the dosage, I get rewarded with a new range of misery. I have gained over a stone, spend much of my day fighting sugar cravings, wake up every hour at night, have fluid sitting round my knees and ankles, get dizzy, muscle aches, suffer constant indigestion (probably because I never stop eating!), and can swing from high energy to completely exhausted at the drop of a hat.

The only other drug I take is an anti seizure medication. I accept I might need to stay on a certain amount of that one forever, but would like it as low as possible too. 

Going through all my notes; both my official medical records, and also notes I’ve made myself as I’ve gone alone, shows a very clear pattern...... I’m doing well...... until they change my medications mix. Then I hit the skids and there are dramas.

My natural instinct is to rush to get off the steroids as quickly as I can. Suffer the short term pain for long term gain. I’m currently on 4mcg in the morning and 0.5mcg at lunchtime. Even drops of 0.25mcg every 2 weeks are leaving me in a total mess. 

So I remembered my promise to keep learning to be the tortoise, not the hare. After conversations with family and close friends, I was reminded that we’re playing the long game. No need to rush. Don’t be the hero. As ever, my Support Team continue to give me honesty and counselling when I need it most.

I have a meeting with my dedicated palliative care nurse tomorrow (remember.... ‘palliative’ doesn’t necessarily mean ‘end of life’..... it just means long term condition that will probably get you some day, but no-one really knows when). I intend to discuss my feelings with her and seek her advice. Thank goodness for the charities...... if we relied on the Health Service alone, we’d all be junkies! 

I’ll take advice from my nurse, but it’s also fair to say that I’m unlikely to be making any major medication changes prior to my sister’s wedding at the end of May. There’s no rush, and I’m not having the day ruined due to me rushing. I have to live with...... not just survive or stagger from one crisis to the next. 

Sun is shining, mood is good, working hard at learning to chill out. Getting there...... xxx