Surgery Week & CCU

 

 

As you'll have read in my last post, I made the mistake of being too clinical in my approach to this whole thing, and the emotional and mental impact of this whole thing hit me like a train.

Just as a warning, images of Tony's wounds around 7 days after surgery are shown further down in this post, I will warn closer to the time in case anyone doesn't want to see. They will be at the very bottom of the blog with a huge warning before hand.

 I'm going to compress the surgery week into one blog and break it down day by day. Tony's hospital stay was for a total of 9 days, the average is 10 to 14, but many get discharged as early as 7 days post op. It all depends on how well the patient is healing.

Tony's brother and partner arrived over from abroad the night before surgery so the 24 hours pre op were pretty crazy too! A brilliant way to take our minds from what was coming next. They were staying with us for 2 weeks, which was good for me as I wasn't coming home to an empty house everynight, and it put Tony's mind at rest as he normally keeps an eye on my blood sugars and night time alerts. I can't sleep at all unless I know someone else gets any alerts, it's also got to be someone I trust to fix the situation, keep me safe and calm. His brother has a wealth of medical experience and ability to keep a calm head when things go wrong having had a career in the Fire Service, so Tony and I confidently handed the ''Bat Phone'' (the phone that receives my medical alerts) over to his brother. On top of managing the surgery experience we'd have to battle diabetes too, knowing all too well that stress, anxiety and so on affect blood sugars in a huge way. It was a confidence boost for me to know someone had my back during this time, and also allowed Tony to switch his brain off from worrying about me, and focus on getting himself well.

We were up for 5.30 on the morning of surgery. Tony had been given a high carbohydrate drink to have pre op by the hospital so we sorted all of that, made sure his bag was packed and off we went.

It was quite a quiet drive to the hospital, both clearly anxious, but we arrived nice and early and headed up to the Day Of Surgical Admissions ward. Tony was checked in, given his wristband and a very fetching backless gown (Top tip: take a dressing gown for walking down to theater! It gets a little...erm... cold).

At around half 8 Tony was asked to head down to theater, they allowed me to go down with him. At 9am 2 very friendly nurses came to take him through to get started. Giving him that kiss and cuddle was the scariest thing I've ever done. You try to be all positive, but in the back of my mind lingered the knowledge of what Tony was about to go through, and though a tiny, tiny percentage (less than 2%), the thought of ''what if this is the last time we are together'' played on a loop in my head.

It sounds stupid, I know. We had no evidence it would go wrong, he flew through all pre op tests, including a full heart exam. He's fit, healthy (baring the cancer) and strong. That fear was still there though, and it's normal. Don't worry if you feel like that too, if you're stuck and need a chat to get through the day, reach out, I'm always happy to lend an ear! 

In preperation for the day, because I didn't fancy getting message after message for updates, I set up a Whatsapp broadcast chanel. Basically, rather than a group chat where everyone can see eachothers messages and contact info, a broadcast allows you to add as many people as you like to it, when you put a text in the chanel, all the recipitents get their own text they can reply to. This meant i could write one message with an update, when I hit send it would go to our friends and family as an individual text, I could then respond to any replies in my own time. I also advised everyone that it was a long opersation, not to expect updates until late evening.

I hope that makes sense!

I'll put a link HERE that explains what it is and how to set one up.

 I headed up to the hospital cafe, found a place to sit and sent a message out to let everyone know that Tony had gone for surgery and I would send updates as and when i had them.

Shortly after sending it out my phone rang. Sometimes in horrible situations, something happens that you'll remember forever. It was my friend Tim.

''Hi Tim.''

''Hey, just checking in to see you're okay''

''Yeah i'm good, how're you?''

''You answered that too quickly love, I'm checking in on how you are. Tony hasn't got to do anything today, just sleep. You're the one going through today. So how are you?''

 I explained I was anxious, but felt steady. I'd gone for a brew, had a few books to read, and I felt okay. Not great, but okay. The brother (not yet) in law and partner were due to join me later in the day, so I wasn't going to be on my own all day.

One of the things that is really difficult with all of this stuff is feeling selfish. All through the cancer stuff family and friends reach out and say things like ''Didn't want to bother Tony, just checking how he is?''

Hold up for a sec, before anyone gets hurt feelings, let me explain.

It's amazing that in that moment, someone thought of Tony and wanted to check in. The thing that's hard with those moments is a little complicated.You try to answer those questions in such a way that it's not going to cause worry for the other person, but is still honest. Both Tony and I are guilty of it, we talk often about how we carry this and take the edge off for other people. So you answer - ''He's doing well, not feeling the best, but getting there slowly''. Not everyone needs the gorey details of being uncomfortable, sick, tired and so on. Out thinking each reply so it's honest, but not going to cause worry is hard and mentally draining.

The flip of this, and this is where the ''carer'' feels selfish is you just want someone to ask how you are, not as a ping pong question of 

''How're you?'' 

''I'm good thanks how're you?'' 

You just want someone to ask you how you are. That's hard, because you're not the one who is ill, having treatment, in pain or anything like that. When someone takes a moment to ask you how you truly are, it's amazing and comforting. Though you feel utterly selfish for wanting it.

You're not, and you shouldn't feel selfish. It's been the hardest thing throughout this whole thing. It's something I bottled up for months, and in all honesty, it was slowly destroying me. It creates this endless cycle of negative thoughts, self talk and so on. I read a substack that links to what I experienced, i'll link it HERE. It's only recently I opened up to Tony about feeling this, we have a no bull shit rule in our house. We talk about everything, good or bad, and work through it. I'll explore this in more detail in a later blog.

Back to the story....

After a few hours sat in the cafe, it began to feel a little too ''peopley''. There's a consevatory in the cafe which i'd noticed nurses heading into for a nap, so I went to take a look and found a really quiet area with sofas and a garden area outside, so that's where I set up camp. 

As the day went on my anxiety grew, it was like a steady drip filling up a bucket. Shortly after lunch I spoke with Tony's Upper GI nurse Mel. She's a really calm, softly spoken lady. She checked in with how I was doing, and checked I would have some company as it's a very long day. Again, it was nice to be asked and checked in on.

Family arrived with me early afternoon. Though I tried to hold conversation, it was really hard. That being said, even when we just sat in silence, it was nice to not be on my own.

Just after 6pm, Tony's surgeon called. He explained that the operation had gone well and he'd ''gotten all of the cancer'' that he could see. I cannot find words to explain how that phone call felt. I was relieved, happy, anxious, this boiling pot of emotions. I was told he was headed for critical care and I could head down to see him when I was ready. The call Ended and I relayed to details to Simon and Maria. They headed home and said they'd sort something for dinner (huge relief because I couldn't even think about how to talk at this point, never mind make a meal and think about food!). I headed down to critical care. I had 2 hours pacing the corridoor before I could go in and see him, they said they'd had trouble settling his blood pressure, but it was nothing to worry about.

I'd prepared for this by getting familiar with the phrases that I would hear, equptment and things that i'd see. It didn't help one bit.

I saw him and  it was a flood of being so glad be was okay, to it hitting me for the first time how serious this could be. It'd always been there, in the background. The fear, the idea of this going bad or losing him, but I always just box that up and chuck away the key. It's easy done when he looks well, fit and healthy. Now he looked vunerable. I wasn't ready for that.

He seemed in good spirits, he asked me to take a picture to update family, friends and the cancer group we are a part of.

Still handsome and smiling after being in surgery all day.

I sent out a message to let everyone know it had gone okay, stayed with him for an hour or 2 while he settled down,  and headed home. It was an hour and a half drive, dark and I was tired. I took it nice and slow and eventually got home. Too tired to park the car I asked my neghbour to sort it for me! I had a a bite to eat, showered, called the hospital to check in, and headed up to bed.

The next morning I was fizzing with anxiety, so I headed out for a walk. On the walk I managed a brief chat to Tony who sounded okay, and spoke to the nurses for a more in depth update. He was still running a low blood pressure, but they suspected that was to do with the epidural.

Visiting was from 2pm till 7pm, and it's a secure unit. Waiting for visiting time was a challenge if i'm honest, but knowing the care that's provided in the unit, it makes total sense! One thing I wasn't expecting, more as a heads up than anything for you. Patients in critical care are very, very ill. It's a place full of upset, anxiety, unfortunately, death too. I'm quite emotionally aware, so being in that environment was hard. I had a vent about it to my friend who is a nurse and she said it's normal to find it hard, she said it's a horrible place to be in!

In total Tony spent 46 hours there. Not the 3 to 5 days we were told to expect. (Have I mentioned he's stubborn and determined?) It was a stresfull time for both of us, I found seeing Tony vunerable hard, Tony found the issues with his blood pressure frustrating as he couldn't stand, pre surgery he'd set himself a goal to be able to stand on his own as soon as he could after the surgery. We'd been told prior that being able to get up and moving would help his recover and discharge time. He was put on a medication to help raise his BP, and by the end of day 2 he could stand with help.

During his time in CCU they allowed small sips of water and hourly intervals and monitorred him for signs of complications or leaks. As time went on the amount of fluid he was allowed increased, as did the frequency. All good signs. 

He was over the moon to be told he was being moved upto a ward, it really lifted his spirits. He was soon settled on the ward and happy to be in a room with daylight (there's no natural light in the critical care unit). The team on the ward were really impressed and said it's unheard of for them to have an Ivor Lewis patient move to the ward so soon. He was allowed to sip water more frequently, with a splash of cordial which was amazing for him! 

Unfortunately he wasn't able to get as much rest as he needed, and this was causing him to feel very frustrated and very agitated. The gentleman sharing his ward was a loud, rude and frankly racist, grumpy man. The nurses were kind enough to move Tony into a side room when one became available later on in the day.

During the day though he had his epidural removed, and one of the chest drains. More great steps.

I thought this was a good thing, the move to a side room, but when I look back at it, i'm not 100% sure if it was. He had some peace and quiet, and was much less frustrated. There were 2 things I believe to be negative about the move though, one being a security camera on the car park below Tony's room that was motion activated, upon picking up movement it would alert ''YOU ARE UNDER SURVEILLANCE'' 3 times. The smallest thing would set this camer off. Not great for sleeping, it's something I carry guilt for, the idea was to lessen frustration, not increasse it. 

I also wonder if Tony being in a room on his own for his hospital stay was good for him, when I look back I don't think it was. There were times while he was in hospital that I was concerned about him. A lack of desire to do anything, not his usual motivated self. Before you say it, I know he'd just had major surgery. I'm not giving him greif, I was concerned. I wondered if being around other patients and having conversation other than with me would have perked him up a bit more. He just wasn't himself, that was upsetting and difficult to experience. 

I called a friend that night and broke down, he'd begun to lose weight, for the first time since all of this started, he looked ill. He looked like the stereotypical cancer patient. Skinny, bald, tired, withdrawn. Sometimes just sitting with him, I missed him, even though he was lead right there. It felt like he just wasn't interested in anything, withdrawn almost. Rik explained that he'd probably be the same way too, and put my mind at rest that it was going to be okay, things would improve.

It's not easy seeing the person you love look this way, I wasn't prepared for it, to be honest i'm not sure how you could prepare. Just go easy on yourself. It's hard, but it will get better.

He dozed and snoozed most of the time during the day. His pain wasn't great but the hospital were doing their best to manage it for him. Thankfully the pain meds made rest a little easier, i'd just sit and hold his hand while he slept, staying for as long as visiting was allowed.

 On the morning of the 8th I awoke to a message containing a picture of a cup of tea! His 1st real drink since monday, he was over the moon and really proud of himself! As I arrived at the hospital that day they were taking his catheter out, and pain med drip, he'd then be moved onto pain tablets, and his nasal tube removed. Leaving only 1 chest drain in, which unfortunately was still producing too much fluid to remove it. Later that day he was allowed to try a meal replacement shake, which was a huge step! He seemed a little brighter in himself and was drinking these shakes like they were going out of fashion!

Side note - Be aware that these shakes can  cause stomach upset post op. We weren't made aware of it, the hospital assumed Tony's stomach issues were due to the surgery, but a little research in the cancer group and we found lots of other people reporting the same issue. We scalled back on the shakes and were allowed to try soup and yoghurt, which helped his stomach and made a huge difference.

The first couple of days of Tony being mobile were especially difficult emotionally. He was to weak to stand or walk without support, he'd lost a huge amount of weight. All of these things are expected and normal after this operation, but as I mentioned, I wasn't emotionally ready for it to hit us. Tony weasn't either. It's not only hard seeing your partner so weak and frail, it's also hard seeing how that makes them feel. I've lost count of how many times Tony called himself a burden, told me I shouldn't be having to do things for him. I always tell him there's no need to call himself that, or feel that way, we're a team. It is hard knowing he felt that way though. 

As the days ticked on, Tony was allowed to eat more firm foods, and drink water whenever he wanted to. In terms of healing, the hospital were very happy. They had a concern about the fluid in the chest drain and did a CT scan to rule out internal bleeding. It turned out to be a small surface bleed which would sort itself out in time.

I visited on the 9th, but only stayed a short while, I was finding seeing him ill increasingly difficult, I was also getting frustrated with myself for wondering all sorts, how long will it be like this? Is this life now? When will he feel like himself? How can I help? What if we can't cope? What if i can't look after him? I also found him being down in the dumps really frustrating, but didn't know how to fix that or help, his lack of get up and go was so out of character and I felt lost. Highly aware that the advice from other post op people was to be up and walking as much as possible to open the lungs and avoid complications I was anxious for him to do that. I'd stayed for an hour and said ''I'm gonna go Tony, I came today hoping to motivate you, you just don't seem in the mood so i'm gonna head home and let you rest.''

Which was met with a firm ''Get me my slippers please!!''

He shuffled his feet into his slippers, grabbed his chest drain and walked the length of the corridoor.

That's the Tony I know. Back in the game!

Later that day he had a visit from occupational health during which he walked up an entire flight of stairs. Not bad considering in the days before he couldn't walk 5ft to the bathroom!

On the 11th, after some conflabs and chats between doctors and the surgeon, they were happy to remove the chest drain and monitor him over night, if they were happy then he could be discharged the next day. 

On the morning of the 12th they confirmed he would be discharged that day. When it's your discharge day, don't get too eager, it's a long day and takes ages!

But! By 3pm he was in the car and we were finally heading home.

 Those 9 days for me were really hard, I'm blessed I had family staying with me, and a great network of family and friends that I could call on when I needed to.

For Tony, it was a painful, exhausting and scary time, but he always comments on how grateful he is for the teams who too care of him during his stay. He voiced frustrations of feeling like everyone wanted from him, things like blood pressure, bloods, eat more, drink more, being asked how often are you peeing? How's your stomach? How do you feel? He also oexplained that because he's healthy and strong normally, he felt under pressure to get well sooner. Though he understands that, although frustrating at the time, it's all a part of being in hospital and recovery.

I've spoken about the guilt side of this a little bit, but I will post about that in more detail at a later time, we'll be back talking about recover at home and that side of things too. Just remember that as the person having the op, and the person caring for them, it's a team effort, work with and support eachother. Just remember that partnerships aren't always 50% 50%, sometimes it's 60% 40%, sometimes it's 90% 10%.

But you're always still a team. It's always 100%.

Images of Tony's wounds are below. Don't scroll if you don't want to see.

Take care guys,

Jo