Another two weeks have whizzed by and I’ve put blogging on the back burner. For two reasons really, firstly I was really not well enough to type up blog posts, no matter how short and secondly I wasn’t really in the mood to over share what was going on at the time. I was very teary, in a dark place and needed to sort myself out before I could work out what I wanted to write.
It’s been quite a hectic fortnight and I don’t think that has helped either, when there is lots going on I have no time to rest and this gives my brain very little time to function. Brain fog is still a huge issue these days and the fuzziness means I often need a quiet environment to just hear myself think.
So what’s been going on, Andrew has been working super hard, he had a major installation in Gloucester only this week, this kept his away from home for two days. He took two “workmen” with him, one being our youngest son, so in turn his fiancé stayed with me as my replacement carer.
I had some pretty invasive testing in the last fortnight at the Royal London it was regarding my colorectal area and I was back under the care of the Gastro Physiology Department, I can’t fault their care and the way they handled the delicate nature of these tests. The only problem was it left me feeling terrible so I didn’t have my NJ feed that night, I just couldn’t face anything I felt wiped out and nauseous, this I believe caused me the problems for the rest of the weekend.
Because by the Saturday afternoon I realized I hadn’t used my NJ since Thursday night/Friday morning so it would definitely need flushing. I got a feeding set and some boiled water prepared, however, of course it wouldn’t work. I called Andrew and he came home immediately. He spent ages trying all the methods on the help cards that Abbotts provide you, push/pull, massaging the tube, I then decided I needed to call the helpline. They suggested heating the tube so we tried that, they also said carbonated water, Andrew headed off to the shops for a bottle of water. We tried again, lots of muck was coming away from inside the tube but it was stuck fast. The lady on the helpline admitted that if those things didn’t work the only thing would be A&E. As Andrew headed to work, I therefore went to the hospital. It took six hours and following a heated debate and a near miss admission, I returned home still with a blocked NJ tube.
Sunday we went to the annual DJ trade show, BPM, I felt this would be one of the easiest things to do (not only to take my mind of the blocked tube) but it strangely wasn’t. For so many years people have seen me well and full of life, so finally see this broken woman, it left me bereft. It wasn’t until I saw one of my oldest friends that I actually broke down in his arms, he just let me sob. Admittedly I felt much better after that but the day had taken its toll! I felt awful and the blocked NJ was now causing severe pain, I was exhausted!
By Monday I realized the community dietician could probably do very little, I did put a call into her though. By lunchtime I couldn’t wait any longer and Andrew took me back to the hospital, by the time we got there A&E was full up, we were told there were 150 people waiting! I didn’t care I was in agony. Eventually I was taken through, then admitted, this time it didn’t matter but it did because on Monday night we had tickets to see Chris Young, we had been waiting months! I was taken to the ward via X-ray and eventually settled in my bed. From midnight I would be nil by mouth, the next day I would be heading back to the procedure room to have the NJ removed.
Tuesday lunchtime after a sleepless night I was taken down, after a panic attack in the GI Suite I was sedated and the tube was removed. That was the end of that! I’m relieved to be honest, I haven’t cried once since, I had cried every day since it had been placed. The only sad part is I gained over 2kgs whilst it was in and I managed to lose one kg already whilst it was blocked and waiting to get it out.
So the plan at the moment is …… I’m due to see my specialist in three weeks and discuss my options then, I will not have another NJ, so it will be a case of having a PEJ fitted after then, we will have to see how my weight is doing. If I am managing to gain any weight orally then I will not need surgery, if I can not gain or even maintain my weight then I will have to go through the surgery.
In the meantime I’m not feeling so teary, I’m not sleeping still, whenever I eat it is agony and my weight has dropped, so I’m trying my hardest to keep going. However I must keep going, nobody is going to fight this battle for me …… I’ve got my rock by my side to keep me strong and I know he will help me weather the storms ❤️