#new beginnings retreat

Sunday

Overall recovery from top surgery is going well. We did very little on Sunday - I slept in until midday as I am very tired all the time. The painkillers are making me quite woozy and groggy, because of this I decided to lower my dose and ended up in quite a lot of discomfort. Being thin means that the drains are really uncomfortable. I can feel them moving around, rubbing and tugging - it’s horrible and hurts. I can also feel the stitches tugging on occasion, e.g. I caught a cup that was falling off the counter top without thinking I got a sharp burning sensation from the sudden tug and could feel the stitches being tugged on. 

After four hours of discomfort I decided to go back onto the full dose and then was very spaced out but more comfortable . On the pain killers I can’t think, I’m very empty and it takes a lot of concentration to join in with conversations and I feel very distant and removed from people. I also feel a little bit sick from the pills. At the moment it’s a lose-lose situation but prefer to be a bit useless than to be uncomfortable and sore.

We were going to go to the beach but due to a series of communication errors Becca and I ended up getting left behind at the house with Jerry while everyone else went out for fish tacos. We made a nice time of it though, Becca sunbathed on the lawn while I hid in the shade, Becca then made some nice fried rice and we watched the comedy Aeroplane while everyone else who had gone on the trip struggled with parking and a really busy beach. So in the end we got a better deal

Monday

Today we decided to go out and about as being in the retreat all day is starting to drive us up the wall and being around people 24/7 is annoying and exhausting. As Becca has posted about already we went to a local wildlife centre that is only a few minutes from the retreat. Just having a few hours to ourselves was a much needed break from everything.

We got a discount for being with New Beginnings Retreat which was brilliant, and I also asked for a wheelchair which allowed me to keep going for longer. I am finding having to reply on others (mainly Becca) quite difficult as I worry that people will get cross with me, or think I am being lazy and so keep on pushing myself too much to do things on my own - and consequently keep on hurting myself. I used my legs to push myself along on the wheel chair with a little bit of steering from my arms for bits of the walk as Becca struggled going uphill at times and standing up made me feel faint (due to drugs plus heat).

Afterwards we met up with Babyface, Micahala, Jerry and Lo, and went to Walmart together. Walmart is a bit of a disappointment - I had imagined it to be a super crazy store that was so huge you could live in it undetected but it was basically just like Tescos. I got told off for trying to pack the food away into the car, I just find that whenever people stand around waiting I feel as if they are waiting for me to do something - but its nice to have the reassurance that I am not expected to push myself to lift stuff. On the way home we stopped off at Burger King and they did a really nice vegetarian burger (England take note!) and chatted with everyone on the way back which was nice as we all get on really well and I will miss everyone when I go home.

Chilling in the bedroom with Becca as shes finding being in such communal living quite tiring, so its nice to have some alone time away from big groups.

I’m going to combine the last two recovery days into one post as not much has happened: I have slept a lot but still feel really tired. The only place I am comfortable sleeping is in the reclining chairs:

New Beginnings Retreat has Netflix so have been watching that for most of the two days. I have skyped my parents, and Fern and Liz too which was lovely to see their faces and hear their voices. At NBR a lot of time has been spent with Jerry (a friend of Lelands)  who is amazing, he is so friendly and kind and doesnt seem to mind spending his holiday time helping look after us all.

Becca has been great and has emptied my drains, helped me with getting dressed and got me food and drink. I’m so glad she’s here, I don’t think there are many people who I would feel comfortable going through all of this with but I love having her here.

Both days Becca has gone out to get away from the house and be a bit active (once to Walmart and out on a bike ride today) and today I managed to go for a walk with Leland, Jerry, the two dogs Molly and Gidget, and Babyface and Michala  at the local park- it was nice to get out the house and get some fresh air.

(TMI Extra: Everyone else has managed to poop after surgery but I still haven’t which is starting to worry me a bit. Also have felt quite sick today and have had  to take anti nausea tablets)

Apologies for the lack of recent updates- recovering and looking after the recovering kind of lulls one into a rhythm of being actively lethargic, of slowing down the pace of life but at the same time never being completely able to relax. Hence why we haven’t quite managed to get it together enough to make a post until now.

So a rundown of the past few days from my perspective:

Tuesday- Kaye’s pre-op

We, along with a few other people from New Beginnings, we driven by Leland to Dr Garramone’s office for pre-op. Kaye’s appointment was scheduled for 10am but unfortunately he didn’t get seen to until hours later, which meant a lot of hanging around filling in forms and signing stuff in the chilly waiting room with irritating soft jazz playing in the background but also meant we got to make a trip to Waffle House along with yungbuckbabyface and her girlfriend Michaela, a really cute and awesome couple from New York who are also staying at NBR with us.

We eventually got ushered into the consulting room where we did some more waiting. We had to do so much waiting that day that it got pretty boring.

Enter Dr Garramone in green scrubs and trainers. He took some photos of Kaye’s upper body and we had an informal chat about the surgery. We we then finally released from the office back into the Florida mid-afternoon heat, armed with a prescription of painkillers, antibiotics and anti-nausea drugs to pick up from the pharmacy.

Kaye was feeling fairly apprehensive that evening. If I’m honest it was difficult for me to know what to say to make him feel better- surgery and the pain afterwards is a scary prospect to digest and there wasn’t really anything I could have said to change that. It’s kind of difficult to feel so helpless in comforting someone so nervous.

Wednesday- operation day

Bonnie took us to the hospital, Kaye checked in and filled in some more forms and we waited. After a couple of hours he got called in to the pre-op area, where I was allowed to join him shortly after. He had been prepped with a cannula in his hand, a monitor on his finger and some sensor sticker things on his back. At this point we made our little Tumblr update post. We tried playing 20 questions and chatting to while away the time before the op but ultimately there waiting was pretty tense and uncomfortable. After about an hour and a half a nurse came along and gave Kaye some calming drugs, after which he says he can’t remember anything that happened. He was wheeled away, I hugged him and I left him in the care of the lovely team.

I then went off in search of a mall (after having fallen in love with the American ‘mall experience’ a few days beforehand) while Kaye was under. I returned to this:

Kaye was cold to the touch, behaving like a drunkard and had taken on a slightly yellowish hue (and I’m certain is going to love me for this description!). He was entertaining his nurse Jackie with slurred jokes and after some time was given the all-clear to be discharged. Leland picked us up and, after some persuasion from Kaye, drove by McDonalds to pick up a large portion of fries.

As chest surgery gives you rather limited upper-body movement, Kaye had to be hand-fed his fries on the way home by Jerry (another awesome resident of NBR). Kaye gets his first taste of being waited on hand and foot and seems to take to it pretty well.

That evening was spent pottering around the house with the other patients and caregivers. Kaye settled down to sleep in the reclining armchair in our room and I finally got the bed to myself and so sprawled myself across it (one of the perks of Kaye being so laid up :P).

Thursday, Friday, Saturday- caregiving and convalescing

If I’m honest, I think I underestimated how much care a chest surgery patient would require in the post-operative period. As mentioned, Kaye’s upper-body movement is severely restricted and so even basic everyday tasks require assistance, such as getting a cup of water or reclining the chair.

Before leaving the hospital, Nurse Jackie showed us how to empty Kaye’s drains, two tubes coming from each incision which allow the fluid to drain out with little bottles on the end which need emptying every few hours. Clearing them out is actually pretty simple but definitely reminds me of how serious a procedure Kaye has been through. He also needs topping up with drugs every few hours as if he does end up in quite a lot of pain otherwise.

Caregiving is something which is completely new to me and I can’t say I’ve found it all easy- adjusting to the new dynamic of our friendship has been a little tricky for both of us and I have been stressing out a bit worrying that I’ve not been doing a good enough job. However I think now we have worked out how to do this a bit better.

Apart from this we have just been chilling around the house with Leland, Jerry and the other people staying here. Kaye and I have spent most of today on the sofa watching Netflix with the others and are currently waiting on a pizza.

That’s pretty much it for now. I will try to nag Kaye into making an update soon but because he can’t move his arms too well it’s a bit difficult for him to type at the moment.

Oh and the dress I got at the mall whilst waiting for Kaye during the operation (only $15!):

Over and out.

Becca