Post Cushing’s surgery – month 4

Time to move into months!

Progress definitely starts to slow down a few months after surgery. Your body is slowly getting used to a new normal. The huge drop in cortisol and therefore withdrawal has become less and it’s easy to fool yourself into thinking this is it, you’re winning! For me, 4 months was very much up and down as I noticed many victories that I had taken for granted but also got knocked back as I realised I’m still a long way off 100%.

The first thing I noticed was my blood pressure. I had bought a lovely little diary a couple of years ago that I just randomly saw in Waterstones. It’s set up with a day per page but each page is split into 5. The page only states the day (i.e. 1st January) and then next to each few lines in the 5 sections is 20.. so you can mark the year and make it last 5 years. There isn’t much space but it’s fine for little notes and I’ve been using it for my blood pressure readings that I take every Friday so they were now starting to overlap on the pages. My first reading in January was a nice eye opener. In 2019 I had been on one blood pressure medication for only 1 month and it hadn’t really made a difference. My readings that day were 131/98, 137/99 and 133/98. Heart rate was 78, 76 and 79. Come 2020 I was on one other medication and of course had had my Cushing’s surgery. My readings were 109/68, 105/72 and 107/74. What a difference. Heart rate has gone the other way though at 95, 92 and 93.

4 months after surgery. The redness has definitely gone and my face is far less puffy. My eyes are more open and my hair feels less brittle and, although still thinner than it was, it is improving. I seem to have a permanent wave to it now though.

Halfway through January I officially hit the halfway mark on my weight. 2.5 stone lost, 2.5 stone to lose. Such an incredible feeling. I find it weird, I’m so happy to lose this weight but I’ve put no effort into it. I can only imagine it must be even more elating for someone who is having to do it the hard way, through diet and exercise as they’ve put the effort and work into it.

5 days later I went from feeling amazing for losing that weight to feeling like I was in the depths of illness again. The physical side of recovery is a hell of a rollercoaster, but the mental side is so much worse. I guess this is where the recent push to bring mental health issues to light has come from but it’s so true, how do you really prepare someone for, or diagnose, or treat such things? I can easily measure my physical recovery as you can see above, in weight loss, improved blood pressure, amount of energy, improvements in what I can do around the house but mentally? It’s a tough cookie especially for someone who is used to being pretty healthy in all senses of the word.

At Christmas I’d decided that I would like to try and get back to work in February. I went off sick in Jan 2019 so it would be a year that I’d been off and seemed a good time to go back. Plus I’d had 6 months of no sick pay so financially it would be a good time too. I’d been in regular touch with my manager throughout the whole thing and we have a good working relationship so she arranged a phone call with myself, her and the lady in HR who was in charge of my case. I’d only spoken to this HR lady once before and then only briefly so she was not prepared for this call and neither was I.

It started out ok, they were just asking how I was doing in general and I explained all of my improvements, how I wanted to come back 2 afternoons a week (I usually work full time) and ease into it over a period of time and mentioned it would have to be afternoons to start with as I struggle to be awake before noon. I even explained how that was an improvement over when I was straight out of surgery. The HR lady however said that me not waking up in the morning and asking to return on less than half my hours was ringing alarm bells with her. It wasn’t helping that my manager was mentioning only 1 afternoon as I’d been off for so long as well. I’d also attempted to say that mentally I felt much improved and of course at that point my body had decided to do the usual Cushing’s thing of making me struggle to find and say the words I needed, totally undermining what I was saying. So all of this hit and before they knew it, I was in tears on the phone. The realisation that I’m still ill hit me.

The stark reminder of my appearance at the height of my illness.

I’m still ill. I’ve seen it dozens of times before in my support groups. “My family and friends don’t understand why I’m still struggling. I’ve had surgery. I’m supposed to be cured.” I thought I was prepared for the fact that it’s not “cut the tumour out and hey presto, you’re fine!” but apparently not. Hearing it said out loud is a shock. I kept thinking I’d be fine to go back to work because I felt I was back to where I was prior to surgery. The thing is, where I was at prior to surgery was still 8 months of being off work sick. We agreed that I would speak to my GP and my endocrinologist and see what they said, then catch up again in a few weeks.

I did get to have a wonderful day out the next day though. My hospital has Pituitary Foundation meetings once a year. I’d planned to go to the one last year but had to miss it as it was the day of my echocardiogram. So this year I forced myself up in the morning and dragged my boyfriend off to the train station.

I was very impressed with myself. Although I took them, I managed not to use my crutches at all once I was in the hospital, including going up a flight of stairs. I did drag myself up by the bannister but I got a hug off my nurse at the top which made it worthwhile! I did have to use them on the way to the train station and at the other end to get to the hospital though. Once there I got to meet 5 or 6 of the wonderful Cushie’s from my support group. One was the lady who had visited me whilst I was in hospital recovering from the surgery anyway so it was great to see her again and the others were all people who post regularly. It felt like I already knew them and it was fantastic to finally see them in person. We’re all at different stages and some of the other people at the meeting had very different pituitary issues to me but it was still interesting to find out how it affected them day to day and how they cope with things.

I did Cushing’s zebra nails for my meet up. Blue and yellow, the Cushing’s colours, in a zebra pattern, as we’re rare medical zebras.

Last years meeting was mostly Cushing’s based so of course this year there was pretty much nothing relevant to me. We had a talk on excess or too little growth hormone and also a talk on a lack of testosterone in men. It was still quite interesting though. It was also nice to see some of my team and some of the other doctors and nurses they work with. I also got a chance to grab my nurse and ask her about work. Her response was “You won’t know until you try, you should give it a go”.

The following week I finally had my emergency injection training. I’d been asking for this since November as it’s vital once you’re not producing cortisol. If levels get too low you can go into an adrenal crisis which can be life threatening within hours. If you do have one you’re supposed to inject, then go to hospital for monitoring and fluids to ensure you’re ok. The hospital only runs these sessions once a month so it had taken a while to get on one.

I found it very interesting though I imagine some would find it too much like school. We had a talk first of all that covered all about cortisol production, the make up of the adrenals, causes of adrenal insufficiency and signs of a crisis. We then had a mini break whilst a lady who looks after her husband gave us a few hints and tips that have helped them out, such as having emergency kits made up, pills in pill boxes ready, just in case you ever forget or run out, things like that. We were then all shown how to make up the injection and administer it. Unfortunately hydrocortisone is too unstable as a fluid so you get a powder, a solution and a needle and have to mix it up when you need it. Not easy if you’re in a crisis! Luckily my boyfriend was with me to also learn it for this very reason.

We then all split into groups and had to demonstrate we could mix up the solution and inject it into a fake leg. Once done we got our own injection kits to take away plus some useful literature around it, a letter to prove we need it if we go abroad and letters to any doctors or surgical wards in the event of us needing medical treatment to advise on extra steroids we may require.

I found this post on my Instagram from May 2015, just before my symptoms started up. The difference is incredible, not just in weight but the entire shape of my face is very, very different. My hair was long and healthy. I think even here though you can see the red flushing is beginning on my cheeks and upper chest.

The final thing is just to say it’s so hard to fully comprehend what we go through and how we change with Cushing’s. Throughout this post are varying pictures of me. Looking back, I got my first Fitbit in summer 2015 which probably indicates when my symptoms first started showing, but at the time it was only in the form of a very tiny bit of weight creeping on and some redness. Something that was so out of character for me that I felt I needed to do something about it for the first time in 31 years. Just looking at the visual physical difference that such a tiny tumour can cause is crazy, without even thinking about all the other symptoms on top of that.

It’s tough to remember but when you’ve been ill for 4+ years, you won’t just get better overnight. It’s a long journey back to health.

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