A frican good night

Can't remember if it was Joey or Noam who came up with the title, but it wasn't me.


Gilly was disappointed to find pills next to his breakfast. He was under the impression that no more Temodal means no more pills. Wrongo Charlie. He still has to take Decadron for a while (to be tapered slowly), which necessitates Panteloc (to prevent ulcers from Decadron). The anti-seizure medication is still required (Dilantin) until further notice. The deficiency in folic acid means that he still takes Folate pills, and the B12 injections will continue monthly as well. So ‘drug holiday’ is an exaggeration of sorts. Being off of radiation and chemo is huge, but it will be quite some time before the side effects from radiation wear off completely.

Still, he had an extra swing to his step as he moved through the day. He came into my office modeling his new cane. He used it to maneuver the steps to the basement and gave it the thumbs up. When he came back upstairs I asked, “Where’s the cane?” “Oh, I left it downstairs. I only need it to go down. I’m fine coming up.” What’s wrong with this picture? We shared a hearty laugh at his predicament.

The rabbi came by at mid-day to spend some time with us. Gilly seemed to enjoy the visit. I sensed that he felt rather important. The rabbi respectfully asked if it is O.K. with Gilly that he pray for him. He humorously answered, “Whatever turns you on.” The rabbi laughed good naturedly and decided he’d take that as a ‘yes.’ Gilly welcomes all positive thoughts and forces thrown in his direction, no matter what faith or belief system they stem from.

The tightening of the banister and roller blade wheel alignment wore him out. He took things slowly for the remainder of the afternoon. He was surprised that his level of fatigue hadn’t improved. I reminded him that his body doesn’t even know there’s been a stoppage yet. The discussion took place just before what used to be his usual radiation time. The Temodal has always been taken in the evening, so he had not even had one day off as yet. The very idea of a ‘holiday’ was enough to lift his mood and give him a temporary surge of strength and motivation, but his body cannot lie; he’s still dog-tired.

I am pleased to report that Gilly’s eyes are slightly improved. The steady decline experienced over the last few weeks seems to have halted. His vision is better in the morning, and so perhaps his eyes are affected by tiredness. The fact remains that it is a very disturbing symptom to live with, and prevents him from enjoying his favourite hobbies and everyday simple tasks.

The head oncology nurse, Chantal, followed up by calling us back today. She provided contact numbers in case we have concerns or questions, and said we'd meet the primary nurse in July when we see Dr. kavan again. I thanked her, and then outlined why I feel Gilly has fallen through the cracks of the system. I told her of the move from the Montreal General to the Jewish for radiation, and how the nurses at the Neuro were not clear on his case because it was unusual to be Neuro + Jewish, which is why we switched to Jewish + Jewish. I expressed my dissatisfaction with the need to wait for Gilly to have physio, when this should have been ordered long ago. I told her about the CSSS visit, and openly hoped that a more comprehensive assessment and follow-up would take place soon. I impressed upon her that enough time has been wasted.

She responded empathetically. Apparently, Dr. Kavan has a habit of getting patients into this sort of predicament. Although he is a wonderful doctor, she revealed, he puts patients in a less than favourable situation by playing this game. We are not the first family to bring it to her attention. She assured me that she will contact the social worker at the Jewish on Monday, and a treatment plan will be put in place without delay. Chantal will have Dr. Kavan prescribe physio, as he should have already done. I feel quite confident that she will pursue this matter. I told her that I can rest easy over the wekend, knowing that she is on the case.

Shabbat dinner was more jovial than usual, and Gilly participated with gusto. He smelled the roast beef cooking in the late afternoon, and by dinnertime, his mouth was watering (thanks Grandma Shirley). Susie initiated a toast to the end of a very difficult leg of the journey, and we all waited while Gilly poured himself a glass of Coke before raising our glasses (see photo).

Gilly has been deprived of the special tea he brought back from his most recent trip to Africa. We made a congratulatory pot. When I asked Joey if he’d like some, he answered in mock annoyance, “O.K. I’ll have a frican tea.” It took us all a while to catch onto the pun. Auntie Ruth laughed hysterically when she finally figured out what we were giggling about. She continued saying ‘frican this and frican that’ until she left. For those who have never had the pleasure, Auntie Ruth is going on her 84th birthday and not in any way prone to using expressions of this nature. It was a riot!

Our home was rocking with laughter and a sense of collective relief as we enjoyed a delicious Shabbat dinner co-catered by us all.