Party games

It's now four weeks since Quent's operation, which means he can stop injecting himself with Clexane (a blood thinning agent, like Warfarin). To celebrate this milestone he introduced a party game for Oakley and myself - the slightly edgy version of 'pin the tail on the donkey'.

Having been banned from giving blood in the early 1990s for excessive fainting, I was first up. I gave my first ever injection on Saturday night and proved I could do it again on Sunday. Actually, it was surprisingly easy. I still feel a little bit faint if anyone gives too much medical detail about anything, but I can now give a jab, if jabbing is required.

This evening it was Oakley's turn and he too passed with flying colours. He is now qualified to become a nurse, doctor or drug addict. (Argh!)


So, we are all feeling quite happy about using Quentin's emergency injection kit, should the need arise. Now, if only we could find it....

...'hunt the thimble', anyone?

New kit

We saw Prof Trainer (henceforth known as Prof T) yesterday. He was very helpful and went through the questions we'd gathered from reading the Addisons handbook.

Overall, it all sounds rather straightforward. We now have an emergency injection pack, for use if Quentin can't keep the tablets down, as well as a blue steroid treatment card. Both need to be carried at all times and in hand luggage on flights. We also have a letter from the Prof explaining the situation, as apparently ambulance crew and A&E staff are sometimes reluctant to give the necessary injections without a Doctor's say so. We have to be aware that Addisons is a rare conditions and Quent joins an exclusive club. His blue card and letter will hopefully wave him through, although I don't think it gives discounts off restaurants or loyalty points as so many membership cards do these days. Hopefully all of our new kit will never be needed.

Over the next little while we need to find the optimum standard dose for Quent. Not too much (long term side effects such as weight gain, osteoporosis), not too little (acute side effects such as tiredness, low blood pressure, mood swings). Quent will start reducing the doses gradually over the next few weeks and we'll have to monitor how he does. From 60 mg a day two weeks ago and 40mg a day yesterday, he's now on 35mg. If all is well, he will reduce further to 30mg and then 25mg. Then we'll hold it for a while. Long term he'll probably be on 20mg or 25mg a day.. with extra if he's ill or in an accident. 

The mantra is that no-one ever died of having too much hydrocortisone, but too little can be life-threatening.

The next hospital visit will be for a CT scan (checking that there's no other cancer appearing) and a bone density scan, so we have a baseline (when checking for osteoporosis in future). In the meantime, good diet and exercise seems to be the order of the day. We've started doing an hour's exercise in the morning. So far we've been walking, but we're going to get the bikes out over the weekend so we can go a bit further afield.

All systems go

We went back to see Miss Warburton (aka Hazel the Honey) this morning. Not before having another delicious breakfast at the Burton Road bakery (Any fellow patients, please take note. They do a delicious eggs florentine with home made hollandaise sauce and sundries tomatoes in the spinach).

She confirmed that the tumour was a renal cell carcinoma metastasis and that it had negative margins - I.e. Clear tissue around it. She had a good prod around Quent's scars and tummy and declared that everything was healing nicely.

To Quentin's delight, she also said he is 'good to go' in term of driving, DIY, cycling, mowing the lawn and sex. It's going to be a busy 24 hours!

Negative frequency-dependent sexual selection (Beards, for short)

You've probably noticed recently how many  young, good-looking men are sporting beards, these days.  According to a recent study, this is due to some Darwinian tendency. Not a mention of going hairy to avoid the risk of shave cuts while on blood-thinning medication.

So here's a picture of Quent, two weeks after his op, displaying his "negative frequency-dependent sexual selection". Eat your heart out, George Clooney.

Another man's poison

Today, with the approval of Prof Trainer, Quent has reduced his dose of hydrocortisone from 20mg / 20mg / 20mg to 20mg / 10mg / 10mg. Once he's better, he'll be on 10mg / 5mg / 5mg (ongoing), so this seems a good halfway point. Prof also said he can stop taking lansoprazole, so now Quent is just on:

• Clexane - injections to thin the blood for another two weeks
• Hydrocortisone - long term medication
• Fludrocortisone - long term medication

The hydrocortisone and fludrocortisone tablets are small (weeny in the case of fludrocortisone), so he won't be rattling with capsules. All good news.

We saw the GP this morning for the next prescription and she pointed out that Quent's tablets are merely replacing what his adrenal gland would have produced; he's not adding anything extra into his metabolism. Good point.

Quent has been into the chemist to set up the repeat prescription. While he was in there, he decided to buy me some perfume. What did he choose? Pure Poison, by Dior. But then they don't do perfume called Imitating Physiology.