Neuroboob: a neuropsychologist's experience of being a patient (breast cancer and brain tumours).: Cording

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.

Wednesday, 13 February 2013

Cording

I wish this post was going to be about pretty cording, the type used in upholstery. Sadly, it's about another side effect related to the lymph node clearance done during a mastectomy.
Cording is another name for axillary web syndrome, where cord-like structures develop in the armpit (axillary area) and trace down the arm, or to the chest wall. It's thought to be due to disruption in the flow of lymphatic fluid, and it can go away by itself after 2-4 months, but it can be painful and lead to restricted motion. This is a problem if it occurs before radiotherapy, as the arm has to be above the head for radiotherapy to the chest. There's more technical info about it here: http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

I developed a cord this afternoon, which was a darned nuisance. I'd been showing off my wonderful range of motion to the people at work this morning, and the physio who saw me yesterday had given me a clean bill of health, with instructions on exercise and skin care to prevent lymphoedema. I then went to the surgeon, who drained off another 300ml of fluid, and went home to try on my new berlei postoperative bra, a gift from the breast cancer people. I wore it today, and it was quite comfortable, though I couldn't get my Dacron-filled prothesis looking right - my seroma was filling again, and by the end of the day, my operated (Dacron) side was looking higher and larger than my unoperated side. Not the most glamorous look, but I don't really at the moment about symmetry.

I don't know why the cording happened - though having a seroma is associated with greater frequency of cording. My new bra was more constricting under the arm than the support singlets I'd been wearing the past two weeks, and I felt there was more puffiness in the skin above the bra than there had been with the singlet - I'll go back to the singlet tomorrow, as it's not as tight and seems to allow the fluid to move more freely. Maybe I did too much today, maybe carrying a school bag for 200m after school contributed, maybe it was going to happen anyway. The limited info about it on the web talks about not stretching the axilla too much in the first 10 days after surgery. Today is day 13, yesterday was the first day I'd put my arms above my head for any period of time. Oh well, makes me take the risk of lymphoedema more seriously, so it's sunscreen every day from now on for me, gentle moisturizers, insect repellant at night (to avoid bites that might get infected), compression sleeves for flying, and gentle massage only.

I managed to get into the physio tonight, she massaged the cording gently and used the laser. The tightness in the cord diminished, but it's still sore under my arm, and I hope it isn't stiff tomorrow. I'll keep doing my exercises to maintain my range, and will be seeing the physio again on Monday. It's a bloody nuisance, the recurring seroma is uncomfortable enough! I have been getting by on one Endone and one panadeine forte for the last day, I hope I don't need to ramp up the pain relief again. There are so many things I want to finish before chemo starts in less than two weeks.

Now to sleep, perchance to dream...Though I'm not sure I want to dream about my evening viewing, involving Blackadder II and Bob. it might be a little disturbing if Lord Flashart shows up in my dreams, or if I see bearded Baldrick in a dress...ewww!