Niko had a MRI scan this week. The scan came back looking about the same as the last one, but what is more of an indication is how Niko is doing physically and cognitively. So we did have a conversation with his oncologist about how he thinks Niko is doing clinically.
It is impossible to tell what will happen in the next six to twelve months, but we are at a juncture where even if Niko does not deteriorate more, he is unlikely to get better either. The most likely thing would be that Niko will continue to decline but the pace of decline is unknown. There is also a possibility the cancer could be terminal in the next six months.
These are not easy things to hear, and less so to talk about. It is dawning on us that we need more help and more professional support particularly in the home. We are trying to find a good primary care doctor (GP) who can take an overview in how Niko is doing and coordinate with his cancer care team. Only now that we are looking do we realise that it’s quite odd that we have gone this long without a GP involved. It’s going to be challenging for them to jump in at this stage so we are looking for someone who has that time to devote to Niko and really be involved. So if any Durham folks have recommendations let us know!
We are also trying to get some help in the home. We need help with Niko but also to support Eleni Sr and Kosta too. We are looking to get some housekeeping support and also a care assistant a few times a week. Apart from the cost, it is difficult to determine how many hours and how many times a week would be best, but we are going to give something a try and see how it goes from there.
The occupational therapist also recommended we adapt the bathroom to make it easier for Niko to get in and out of there. We need to widen the doorway and replace the door with a sliding door or similar to open up the space. Again, we would welcome recommendations if you know someone who could help!
There are going to be a lot of costs associated with these new things. We have thought about it a lot though and we feel these would make a big difference to Niko’s (and all of our) quality of life in the next six months. Here are some ways you can help us too:
- donate $20 a month for the next six months. This will go towards our increased medical costs and support services, and help us plan ahead.
- commit to a regular weekly, biweekly or monthly visit. Early evening or late afternoon are the best times, or around lunchtime. Call Eleni (919-448-5557) to set a date. Bring some fruit or just yourselves. One or two people at a time is best and short visits of an hour or two.
- we have enjoyed lovely dinners folks have brought over too, so please keep offering this if you would like to. I doesn’t have to be a meal either- if you have some veggies from your garden or the market, or some fresh eggs we can always make use of those. Tuesdays are clinic days and usually pretty long, so dinners on Tuesdays are always helpful.
It’s been a very hard time for all of us. We can’t thank our friends enough for making it that little bit easier.