Ned is home! It took an extra day as the doctors wanted to adjust his pain medication, but he has been home since Tuesday and I feel like things are going okay. He now eats as normally as possible during the day, and has a pump feeding him for 8 hours overnight. We spent most of yesterday at the Christie Hospital in Manchester getting blood tests done, so I packed us both a lunch and snacks and that seemed to work really well. Today has been a touch easier because for the first time in about 2 weeks we haven't had an appointment to go to or any visits scheduled, so we have been able to prep and eat food at our leisure. Food is such a focus now, it's so strange.
Apart from a couple of minor mishaps, the feeding tube hasn't been half as scary as I was worried about either (despite a little spill when we forgot to do the clamp, and getting my times mixed up and having it bleeping at us at 4am!). I am definitely feeling more confident about it now. One thing that worries me is how much the peg hurts Ned, just to get up and move about seems very painful. He says it isn't sore like it is infected, but rather that the muscles all round it hurt. I suppose after having a procedure like that done, that must be fairly normal. We will keep an eye on it. The nurse is visiting us tomorrow, so that should help put my mind at ease with that.
My worries about the work situation look like they may soon be over too! I had a chat with my manager on the phone on Monday and she explained that she had been working on a plan. She advised that, for now, I get a sick note from my doctor so that we can spend time just being home and together. However, she also suggested that it might be possible for me to work from home for a while, to enable me to take Ned to appointments and care for him, but not be classed as absent from work. She needs to talk to the HR and IT department about if before anything can be arranged, as it's actually against policy for someone in my role to work from home, but if we can get them to be flexible on it in this case then I think it could work! I have a doctors appointment for myself in the morning to get the sick note (I'm a bit nervous that they might not give me one as I'm not the poorly one, but we will cross that bridge if we come to it), and I'm just waiting to hear from my manager on the working from home idea. All in all I feel like some good progress has been made on this front!
One issue that has got us both frustrated over the last week has been an appointment we were supposed to have to freeze some of Ned's sperm. The Chemo that he will be having has a risk of making him infertile so the appointment is some protection against that. We have always wanted children, and it is quite a sensitive issue for the both of us as we have lost more than one pregnancy over the last few years. We jumped at the opportunity to freeze Ned's sperm so they took some blood samples to run standard check and told us that St Mary's Hospital would be in touch to arrange an appointment once the blood test results were cleared.We have waited and waited, then chased and chased... the sperm freezing has to happen before the Chemo starts and the Chemo is scheduled to start on Monday! Finally, today, someone got in touch to explain that there had been a mistake made with the blood samples and something had gone missing, creating a delay. They assured us that the appointment for St Mary's would be either tomorrow afternoon or Monday (which would then delay treatment starting by a day). We haven't heard anything about tomorrow, so still have no idea if it will be then or if we will have to wait until next week and delay treatment, something we wanted desperately to avoid. I know these things do happen, and that they have had very little time to turn this around for us, but I can't help feeling really frustrated. This has not only added a stress and worry that we could do without right now, but has dredged up some rather raw emotions regarding children. :(
For now, the only thing to do is focus on keeping myself busy with housework and organising (there's no shortage of stuff to do!) so that I don't stop and think too much. Mornings are the hardest as Ned feels his most ill in the morning. Afternoons are the best time as he tends to be a bit more active and we get to chat and watch some telly together. I suppose it's about maximising the good times, and weathering the bad.
