Kath Lewis

I cannot believe that we are half way through March already, and how busy my life is. Following my initial visit to the Christie at the beginning of February I have already been back three times, and have another 3 visits over the coming weeks. However, once all the tests and results are out of the way I am hoping that will be it until June. So fingers crossed.

Following my initial visit to get the ball rolling, I was back the following week to get my top up injection and to deliver my stool sample. I tolerated the additional dose well and received a prescription for Creon to help with my enzymes production. As it turned out the sample proved negative, but following my injection at the beginning of this month I was asked to take a week off to see if it was the higher dose of somatuline or the tabs that had helped with the improvement in my toilet habits. Turns out it was the Creon, so I am now back on it.

Boy is it hard to get used to the routine of taking it though with meals and snacks. Its not like being prescribed an antibiotic or something, that you know you have to take at certain times of the day, this is purely down to me. I am getting there, but it is not unusual for me to remember half through my food, and when I realise I have forgotten all together you may hear the occasional expletive , as it is to late then.

Also it would seem that the sun has brought out an energy rush, and there has been some spring cleaning underway. I love the way the sun makes you feel happy even though it is still cold, and we have seen to little of it over the last few months. Although I think the burst of energy has not agreed with my stomach, which has been quite painful for most of the month, requiring me to resort to painkillers on occasion.

But my mind and body wants to do stuff, and when I think back to how I was this time last year; visits to A&E, crawling up the wall with such severe stomach cramps that it felt like somebody was sticking hot pokers into my guts, not being able to get any decent clothes on as my stomach was so bloated nothing fit, feeling desperately tired and looking it. Thinking that if I hear the diagnosis of IBS one more time I will start to scream and never stop, I had no motivation to do anything.  So I am just glad to feel energised, but I know it is ok to stop (or at least slow down) when the need arises. It the past I would have gone at it hell for leather, just to get it all done and out of the way as quickly as possibly.  I am not a big fan of housework, that gene is defective in that it only works intermittently, it is often triggered by guilt I think or in this case the sun coming out!!

In an effort to keep my brain active, I decided to sign up for some free courses on FutureLearn, which is run by the Open University. I have started my first one on “Logical & Critical Thinking”, which is interesting and reminds me a bit of my law courses back in the day, the first part is about constructing arguments. Something which by the way my husband says I need no help with, but then again he would!  I also have a ‘Social Media’ course lined up for April, this will hopefully help me navigate properly the online world and use it to my advantage, then a ‘Basic Italian’ language course. We didn’t do languages at school, and I am ashamed to admit that I made n effort after, but I love Italy and hope it is not too late for me to at least master some basics, so fingers crossed.

Last weekend I was also lucky enough to meet up with fellow Net patient Richard Young. As a Southampton football fan he had travelled up to Stoke for the game and we met up before hand. My husband is Stoke season ticker holder, so we met up before the game, very wisely as it turned out, Southampton won.   I must say that it was great to meet up with somebody face to face who is experiencing the same thing, and we had a good natter. He has also just had his first course of PRRT, and I wish him well with the rest over the coming months.

I have had my biopsy and review results too, my biopsy percentile check confirmed that it is 7.8% and not 5%, so not a big difference. Thankfully there is not much progression in my liver , so no treatment required there yet, they will continue with watch and wait, and do another MRI in June. I have a CT booked for the 23^rd March to get a new baseline for my primary in the small intestine, and check my heart and lungs. Also, I have been told that they can look at taking the primary out at some stage in the future, this will be to help reduce the chance of complications further down the line such as blockages. I am also going to meet the surgeon after the CT, as my consultant wants us to get to know each other sooner rather than later as I am still experiencing stomach pain.  I  do like this approach, it is good to build relationships with the people who are helping to keep you well.

Unfortunately though we have taken the decision to postpone our holiday to Canada for this year, as there is still so much going on. Which is not what we wanted to do as we were so looking forward to it, but it is only a postponement. We fully intended to go next year and it gives me plenty of time to plan, and I do like to plan!! It also means that we will be there to celebrate our daughters birthday with her, so every negative always has a positive.

Finally, I would like to finish with this, which is in a way related to the title, but we watched the film ‘Interstellar’ the other week and I picked up on and made note of the following line, as it pretty much sums things up for me:

“Im not afraid of dying, it’s time I’m afraid of…”