This is a quick update for those of you who saw my Twitter post last weekend – I was overwhelmed by the outpouring of supportive messages when I tweeted that some days were harder than others and that I realised that it was okay not to be strong 100% of the time. I’m conscious that as a very ‘glass half full’ person, most of my posts are upbeat and positive, I’m usually smiling in my photos, and there is a lot of talk of ‘Wonder Woman’. And, I have to say that the positive days do very much out weight the negative. In fact, I did an online survey this week about my general state of well-being and happiness, and I scored quite highly.
However, in the age of artificially beautiful social media personas, I feel that it’s important to give a very balanced picture. It’s not all smooth sailing and I’ve had some really bad days as well. By the end of last weekend, I was absolutely worn down by my situation. Without going into detail, life with an ileostomy is not straightforward and I really hadn’t anticipated how tough it would be – mentally as well as physically. A lot of tears have been shed in frustration. And I hate crying. However, I realise that it’s probably quite a good thing to do. In fact, I’ve been advised to really howl when I feel bad. It’s all part of the process of grieving and moving forward.
So, I remain positive overall. I’m genuinely happy with my life. I am grateful that I feel well, that my surgeon was able to operate and remove my diseased colon and that I can still function pretty normally. I love my life – my family, my friends, my job, and my 30% Club work. However, I am going to openly admit that I’m fed up with my new low-fibre ‘beige’ diet of white carb easy to digest food and with the added hassle of everything that goes with having the end of my small intestine sticking out of my tummy. And my control-freak nature hates the fact that I have no idea how this disease will progress, so I can’t make a plan for dealing with it. And that’s okay. I am learning to just live for the moment, to ‘make hay while the sun shines’ and, if I shed a few tears in talking about it, please don’t worry – just don’t let me walk around with makeup running down my face.
Okay, so I wasn’t actually ‘rockin’ around the Christmas Tree, but I did have a very nice Christmas. Along with my Mum who is visiting from Nova Scotia, our friends Bridget and David with their daughter, Elsie and toy poodle, Prince came down from London for Christmas as they do every year. We played lots of games and laughed a lot, which was lovely.
I am taking it relatively easy with at least one nap a day and am starting some short walks. I was delighted to wake up on Saturday morning and walk to the petrol station for my papers – it felt ‘normal.’
I’m still working on my weight. I’ve been consuming as many highly calorific foods as I can and have managed to gain two pounds (up to 106 lbs now!) and I’ve been able to cut my pain meds back to only once a day before bed. So, all in all, good progress – looking forward to more games on New Year’s Eve when Teddy’s girlfriend, Lottie (who is very competitive), joins us. Bring them on!
Never has a song title been more apt. We are outta here!
Goodbye central line. Brenda is off her TPN (Total Patient Nutrition) and eating three small meals a day. We’ve just walked downstairs together which is another tick in the box towards getting home.
Back on track. A good night’s sleep, a breakfast of champions (chocolate ice cream) and GREAT PAIN MEDS.
‘Totally cr*p day today. No need to sugar coat it. I was not ready to give up the pain relief. I had many tears and have had some pain relief back. They are re-instating my feeding tube as I can’t consume enough calories on my own. They want me to eat chocolate bars and crisps and get at least 2000 calories a day – I can’t get near it. On a positive note, Trend helped me to have a shower. Not so strong today, feeling a bit sorry for myself. But that’s how it goes.’ x
Enough said. I will be popping into Starbucks on my way in tomorrow to buy an 800 calorie Signature Hot Chocolate with double whipped cream and marshmallows on top.
Get well cards read, I was happy to wash Brenda’s hair for her this morning. The showering process leaves her sitting in a freezing bathroom, getting progressively more and more cold, so breaking the process into parts seemed a good idea. No sooner had we finished then Brendan (our surgeon) appeared at the door. Into the bathroom he came and he was stated that he was very pleased with Brenda’s progress. Even talking about potential days for her going home (next week hopefully). We see Brendan as our saviour and we are always delighted to see him. His parting shot, “Remember Brenda, we’re only separated by an ‘n’..”
There followed a little bit of maintenance, including the removal, for good, of Brenda’s main incision dressing and then off down the corridor for a spot of physio. Bridget and Mary Lou arrived their visit proving to be a great distraction with lots of laughs (our nurse for the day asked later if they were our daughters..we are all the same age!?)
Late afternoon Brenda and I did a circuit of the corridor and some moves on the parallel bars. Lots of positives today with breakfast, lunch and dinner taken, all of which will help to get Brenda’s digestion going and hopefully lead to her putting some weight on. I left her with the prospect of a bit of telly watching her fingers firmly crossed that she will have a better night.
A slightly broken night’s sleep but after a wash and brush up and super duper new pants (Bid that is for you) it is time for her first ‘real food’ breakfast
Today has been a bit of a rollercoaster. Brenda had an issue with her pain relief running out this morning. The term ‘patient’ has an implied direction in it, but this shall we say, casual approach to her care, necessitated the ‘squeaky wheel’ option to be taken and by the time I arrived, some oil had been applied.
A whole slew of good things then happened. A shower sponsored by Jo Malone, whose shares must be going through the roof. Then the news that Brenda’s catheter and last drain would be removed, which would make her more mobile. A certain amount of trepidation greeted this news, but both procedures, I’m happy to report, passed without incident. This was followed by a spot of physio, a brief performance on the parallel bars and some step climbing. Adele, soup maker extraordinaire, paid a visit and by the time she left, the stuffing had been well and truly knocked out of Brenda.
This afternoon she had a procedure to move her central line from above her clavicle to her jugular. The operating theatres are cold, and by the time she returned, she was freezing, feeling a bit knocked about and on top of that, everything clouded by anaesthetic. She will be fed through the central line for the next few days. She is desperately thin and there is no need or any great incentive to rush headlong into a menu of jelly and ice cream.
Here’s hoping for a good night and a day where she can enjoy being able to race about the corridors.