Things have settled down nicely here since the introduction of the PEG. All praise to the District Nursing team who made sure we knew they were available day or night. We were glad of them over the first few days, indeed the first week. In fact, the first few days were pretty overwhelming. It felt like we had crossed some invisible line - my role felt more like nursing care than Carer and I think neither of us had anticipated that.
Day One at home introduced us to the concept of the leaking peg. I'm almost sure there's a character in a Georgian novel I once read called 'Leaky Peg' (she gave her infant strong gin) and for some days the name came to mind as I went through the ritual of cleaning around the 'stoma site'. That first morning we thought perhaps the exertion of being brought to a sitting position in bed and being helped to stand, had caused the fluid to leak. Nobody had mentioned this as a possibility so we had no idea what to think. We called Careline to request a visit from the District Nursing team. Community Matron Clare arrived around midday and was very reassuring. She told us that it looked okay to her, that this sometimes happens and just to continue to clean it regularly. Over the next few days the leaking got worse and it was beginning to make Roch feel bad. Stains were visible on his tee shirts and there was an odour. The shirts were changed and washed and we began to put gauze over the stoma site although we knew the nurses felt it was better to leave it uncovered. But it was making Roch feel self conscious. In fact Roch was feeling pretty rough all round. We had definitely underestimated the effect the general anaesthetic would have. For the first time, he confided to me, since the Day of Diagnosis, he felt like a person who was terminally ill.
On the Monday, we had a visit from Jo Lambert, our Community Matron. She explained that the fluid was produced naturally by the body, which was attempting to heal itself. This made perfect sense to us and over the days that followed, we realised that when the fluid caked on the skin, it resembled scab material. I just wish someone had told us this before the procedure. A PLM friend of Roch's had told him that he also experienced leakage after his PEG insertion and this did help to reassure us. Thank you Bob.
We were supplied with wound dressing packs and sterile solution to clean the wound. The small hospital table in our bedroom came to resemble a nurse's station whilst our kitchen table was strewn with bolus syringes, sterile water, latex gloves and boxes of fortisip.
The nurses in the hospital had advised against showers for at least ten days but to Roch's immense relief, Clare introduced us to 'Tegaderm' sterile adhesive film dressings, which meant the stoma site could be protected whilst showering. A Godsend.
For a time after we came home, I felt angry and bitter. Valentine's Day came and went and Roch and I agreed to postpone any kind of celebration. I forbore to post a bitter observation on Facebook but I quote it here to give you some idea of how I was feeling.
"Happy Valentine's Day, and for all you lovers out there, here's a thought. As you lean across that romantic candlelit table to feed a delicious morsel to the man/woman in your life - make the most of it - someday you could be feeding him/her through a tube in their stomach."
Impossible for me to imagine being in the company of 'normal' couples, listening to tales of holidays spent together, experiences shared, without feeling bitterly resentful.
My counsellor is currently abroad but I have been the lucky recipient of what we like to call 'transatlantic therapy' and over the telephone we discussed ways of dealing with my feelings of anger. So if you see me in my car, mouth open and with a no doubt contorted expression on my face, you'll know I am following expert advice and yelling at the top of my voice in a controlled environment. I don't, of course, indulge in this exercise whilst driving.
I have also found that a good belly laugh offers similar relief. Recently a neighbour popped in and we swapped stories of our recent struggles and family crises. Surprisingly, given the subject matter of our conversation, we ended up bent double, eyes streaming as we howled with laughter over really the silliest thing. I mean, what else can you do? It helped so much.