344 in the morning, the wind is swirling and whining outside. I'm propped up in bed, grey woollen wrap around my shoulders, black polar fleece tube around my neck, lilac crocheted beanie on my head. Warm and inelegant. I wish I was still asleep, dreaming of walking like Elle MacPherson (or was it Michelle Bridges?) along a windswept beach.
In 10 minutes I'll take my second Clindamycin for the morning. First, I'll take another spoon of the concoction I made to try to protect my stomach. Last night, it was tinned peaches and cream. This morning, it's yoghurt, peach juice, and cream (I ate all the peaches last night). A cloying and slightly revolting mix on top of the revolting taste this antibiotic seems to being. The first Clindamycin is simmering away in my gut, so I take another spoon of the yoghurt mix, careful not to take too much because it has to last me another two tablets.
This is the most awful medication I've ever taken. I took the first few doses (3x150mg capsules, every six hours) in one hit, only to be struck with what I thought was heartburn, but then realised was stomach pain. Incredible, sharp, pain in my stomach, not relieved by antacids, drinking milk, or taking yoghurt. My oncologist suggested I separate the tablets by 30 minutes, which has helped. Internet searches suggest staying upright for at least 30 minutes after each dose, taking them on a full stomach, and not drinking too much water. (time for the second capsule now, I've never been afraid of medicines before)
I'm on this horrible antibiotic because of the cellulitis over my seroma. You may recall my seroma had swollen and become red when I was admitted to emergency with a fever 2 Mondays ago. The swelling and redness subsided with IV antibiotics, and came back when the IV Vancomycin was withdrawn last Saturday. My surgeon put me on Cephlexin when I saw her on Tuesday, and my oncologist changed that to Clindamycin when I went in for my second round of chemo on Wednesday. It is a powerful antibiotic, used for anaerobic infections, and apparently stockpiled in the USA in case of an anthrax attack. It can cause a whole range of side effects, with diarrhea and colitis being among the most serious. I'm glad I haven't had them, yet (touch wood), but I need to be vigilant for months afterwards because there can be delayed and serious GI consequences. Just what I need, another thing to watch out for.
For best effect, I need to take the Clindamycin every six hours, including overnight, so that there is a constant level in my system. I really didn't want to wake up and take them this morning, it's such a good night for sleeping. But I thought about the prospect of missing chemo again, or being put on more powerful antibiotics (if they exist), or having to be admitted for more IV ABs, and it seemed better to take my medicine. It gives me a chance to write, and to encourage every one of you not to take your health for granted.
I know that some of you have been through far worse than me, and you won't need any encouragement. However, there may be some of you who still have that wonderful sense of invulnerability, that nothing bad will ever happen to your health. I hope that you're right. But to give yourself the best chance of coasting through life with good health, please look after yourselves. Eat healthy foods, exercise, sleep, take regular holidays, lower your stress levels, love, laugh, and do whatever suits you in terms of cultivating your spiritual side. Take a good look at your life and see if it's truly balanced. Try to achieve a better balance, and don't take risks with your health and wellbeing because your job/family/mortgage/whatever are demanding too much of your time. You need to look after yourself before you can look after others.
Sorry for the soapbox, I just hope that all of you have good health and happiness all the days of your lives. I heard similar messages, and even gave them to patients, but never thought it applied to me. I was never going to get sick. I was going to cruise through life like my great aunty Olive, living independently and happily to the age of 102, chasing off would-be burglars with my walking stick at the age of 96. Who knows, I may still get there, much wiser now than I would have been. And hopefully not affected by lymphedema, colitis, or recurrence of cancer.
Time for the third capsule, after some yoghurt. The cream seems to help coat my gut, but it's revolting. Then I need to stay upright for another 30 minutes, then risk lying down and sleeping again, but only until 9am, when I'll have to do it all again. And deal with the fatigue and intermittent dizziness that has been afflicting me since Thursday. My 89 year-old mother-in-law is coming back in the morning, staying with us for about 3 weeks over Easter. I'm not sure I can cope with another person asking me to do things for them. It's hard enough to get through the day looking after myself, and doing small things for the boys and Ben, and our elderly dog (deaf, blind, walks in circles, sleeps a lot, and prone to toileting inside if we don't catch him in time). Having to prepare lunches for Hannah (who will eat soy crisps and biscuits for lunch if I don't watch her) is going to be a challenge, when I don't know what to eat most days. Time to call in the offers of food from friends. I need microwaveable meals so that Hannah and I can have easy lunches. And I need someone to help me cook fresh food for everyone in the evening. We've been having takeaways too often lately.
Enough twaddle. It seems the yoghurt and cream has shielded my gut from the pain of those capsules. Today is the fifth day of treatment, I might be able to stop taking them tonight.
I'd hoped that this blog would be positive and upbeat throughout. Naiveté was a lovely thing. It turns out that getting treatment for breast cancer is quite unpleasant, and even a positive attitude can't prevent shit from happening. I don't like to grumble, but it's really annoying that I've racked up so many side effects (including cellulitis, which one source estimates has a 4% prevalence after mastectomy). So I will stand humbled, chastened by my delusions of immortality and robust health, and I will accept that I may have to go through a whole lot more crap before this thing is over. It's one hell of a way to have some time off from work.
A blog started in 2013 to inform family and friends about my treatment and progress for early breast cancer. Then I went and got two brain tumours,,both GBMs, completely unrelated to the breast cancer, so the blog continues.
Background and overview
I learnt more about the health system from being an inpatient than I had in 20 years of working as a neuropsychologist. I was unexpectedly diagnosed with two brain tumours on 4/9/13. They turned out to be grade IV Gliomas (glioblastoma multiforme (GBM)). After removal of the right parietal and left occipital tumours, I received the standard treatment under the Stupp protocol (combined Temozolamide (TMZ) and conformal radiotherapy 5 days/week for 6 weeks), but the TMZ had to be ceased after 5 weeks because I had started to develop pancytopenia, where more than one of my blood counts had begun to drop. By Christmas 2013, I had become anaemic and needed a couple of blood transfusions. I ended up in hospital for 3 weeks of the 2014 new year after experiencing my first seizure (suggestive of a right temporal lobe focus) on 31/12/13). They were so worried about my bone marrow, they did a biopsy. Luckily, it was all clear of any nasty disorders. It had just been suppressed by the TMZ My blood counts slowly returned to normal with daily injections of GCSF, which stimulate bone marrow function, for several months. For 17 months I was doing better each day, without any physical impairments or major cognitive problems A third brain tumour was found in the right temporal lobe on 2/1/15, and removed 6/1/15, only to reappear on 17/2/15 after I started to feel vague symptoms at the end of 2014. I had my 4th round of brain surgery on 1/3/15, followed by stereotaxic radio surgery of a residual, inoperable, tumour, on 17/4/15. I've been feeling like my old self again since that highly precise form of radiotherapy, and it feels fabulous.
My way of coping.
I choose to live in hope that everything will work out for the best. I've learnt that even though things are sometimes unpleasant, life and love go on forever. I put my faith in the life force that created and unites us all in love, across all time, space, and dimensions. I refuse to succumb to fear, which is an invention of our imaginations. There are an infinite number of things to fear, both in this world an in our imaginations, and most of them never eventuate. I choose not to dwell on them, and to focus instead on counting my many blessings, current and past, and to have faith and hope that if I look after the present moment, the future will look after itself.
If you're reading, and haven't been in touch, please don't be shy, send me a brief private message using the contact form on the right. It's nice to know who's out there. Blogging can leave me feeling a little isolated at times (I used to have recurrent dreams of being out on a limb over a canyon, or of starting to strip off in a crowded waiting room). Your emails are appreciated, although I can't necessarily answer all of them.
