Hi Tash026,
Hopefully my thoughts will be of help, but I realize too that since you are in the UK, things may be different (procedures, policies). You asked about how you can be helpful during recovery, but first I thought I'd add some notes about getting ready for surgery, and tips during his hospital stay. Please understand that these are just my suggestions bases on my own experiences. As you will learn, everyone is different.
1. My husband was diagnosed about the same time as yours. Although he could have had surgery in November, we held off until January. I am really glad we did. The recovery is likely going to be a long one. So just enjoy the holidays, and let this be the first thing you tackle in 2017. Of course, assuming your doctor agrees! Our doctor said that his tumor had been growing for many years, and waiting a few weeks would not make any difference.
2. If you are going to be staying at a hotel while he's in the hospital, try to find a place as close to the hospital as possible. Usually the hospital will have a list of places to stay nearby. Often they will offer a special patient rate. However, we found better rates online. So don't jump on the hospital deal. If the hotel has a restaurant, that's even better. You are going to be spending a lot of time at the hospital and it will just be nice to come back to the hotel and grab a bite.
3. My husband really did not need much in terms of his personal belongings at the hospital. He slept and/or just rested nearly all the time, unless they were getting him up to walk around. You, on the other hand, are going to need an activity bag! It can be a long day. Bring your slippers, maybe a blanket (although they should have them
, some snacks, drinks, knitting, crosswords, etc. Don't forget your phone charger. Speaking of phones: I found that to be frustrating. I didn't want to be having lengthy conversations in my husband's room while he was resting, yet they really don't want you on the phone in the hallways. If I went to a lobby, it was too noisy! I needed a closet somewhere!
4. Find out when the doctor makes his rounds, and try to be there. You will have a lot of questions. ( I found if I got to the hospital at 6:30 AM, I often missed one of the doctors.) I remember when they would ask my husband questions, I would want to answer for him because he was really having a hard time. I realized that they didn't want me answering; they really wanted to hear my husband answer to see how alert he was and if there were any speech issues. So try to resist unless they ask you!
5. Don't expect to come in each morning, finding a new and improved husband. (That's what I did... after all, he's had a good night's sleep. He should be better, right?) Since they sleep so much, you may not see a difference in the morning. It might happen at 10 AM - or in the evening.
6. Remember your nurse's name! It's good to make friends.
7. Don't expect the doctors to give you a wealth of information. I found that they tend to give little info unless you ask. And then when you ask, it's the bare minimum. Don't be afraid to ask, "What's that mean?" or "How come?"
8. Your husband is going to be so tired. Tired like he has never experienced. Try to be patient. I had days where I swear he said three sentences to me. (But that was just my husband. Everyone's different.)
9. The evening is a good time to return phone calls, send emails, etc since it can be a bit boring after everyone's gone home. It will be pretty active during the day with staff coming in and out.
10. We used the "Caring Bridge" (
www.caringbridge.org) to give updates to family and friends. I set up a page a few days before Barry went in for surgery and shared the link with my contacts at that time. They can then sign up to get your updates, and leave responses on the site. It was a huge help to have that resource, rather than repeating the story to everyone. (and forgetting who I told what to.)
11. I brought a hand mirror in for my husband. He had some numbness on one side, and therefore, couldn't feel it when a Cheerio was stuck to his lip! It was nice for him to use when I wasn't there.
12. Put the TV on. It gives them a reason to open their eyes! I figured that one out on Day 5.
13. When I had to leave my husband's room for a period of time (to get lunch, etc) I was afraid that that's when a doctor, case manager, physical therapist would come in for a visit. And I would miss it. So I took my husband's phone, created a text to me on it, and then just told him to press SEND if someone came in. It will likely be too hard early on for him to be texting, dialing a phone, etc.
(I just told my husband I am on tip #13 and we haven't even left the hospital. And he laughed. So it is going to get better!)
Here's what I found helpful regarding recovery back home:
1. I got a shower seat for him. Your husband's balance is going to be off, so standing with his eyes shut while he washes his hair is going to be a challenge. A chair is really helpful.
2. I had everything ready for life-on-the-sofa before we even left for the hospital. Pillows, blanket, the remote nearby, a clear path in and out of all the rooms. I also bought ice packs, ice cream, straws for drinking, cups with a lid so he can walk with a coffee mug or cold drink and not worry about spilling it, night lights everywhere!, a blank calendar for keep medicine notes, issues and concerns ("So how long has he been complaining of this?"), soft fruits. We also switched our shower head to a hand held one. He really liked that. (FYI we did not need the ice packs). I also bought him plenty of shirts and pants (more like work-out clothing) that was comfortable enough to lay around in, but good enough if someone should stop in to say hello.
3. It had been suggested we get a hospital bed so he wouldn't have to climb stairs, but I passed on that. As long as I was with him, he was fine.
4. In the car on the way home: I brought sunglasses and a baseball cap, because the sunlight can really be hard on them after surgery. I also brought along one of those neck rests and a blanket. And a trash can.... just in case! (not needed, whew!)
5. At the hospital: I brought so many things - snacks, mints, bathrobe, Kindle, baby shampoo, pajamas, Chapstick. He wanted none of them! He honestly just wanted to rest.
Well, Tash026, I hope I haven't overwhelmed you! I know I have given you a lot to think about. And in case you are thinking I have a remarkable memory to have written all this, no I don't; I just went back to the notebook I started when we first began this journey, as you are doing now.
Good luck, and keep us posted.
Debbie
