There are a lot of things that they don’t tell you about having a PEG fitted, like:
- The Pain level.
The Pain Level
This does not just hit you for 6, but for 7, 8 and a few hundred numbers after this as well.
I have ended up totally bed ridden, and totally immobile, and by that I mean ‘Any’ movement at all causes pain, and by that I mean every breathe cause pain and of a level of level where you really do not want anything to continue, there does not seem to be an end at the moment.
If you need to get vertical and on your feet, then first off, this will take an hour at least, during these movements and pressure applied to or even neat the stomach area has an instant reaction of no ability to offer any help at all, but at the moment, I really cannot do much at all, it takes two people with a lot of patience to get me on my feet, once on my feet, supporting my body hurts, I’ve lost so much weight of late, which is great, it’s not a weight issue, it’s more of a gravity and a lack of strength that’s causing the issues.
Moving forward is a challenge, I cannot lift my feet, so even a sock on the floor will cause a level of pain that is totally horrendous and cause my legs to buckle and to even fall, having to people there to stop this is a necessity, I cannot lift mr feet, every little bit of moment brings a level of pain that it mind numbing.
So let’s just say that you get to the bathroom, going from upright to sitting is a 20-30 minute process of move one way a bit, rest till thr pain goes down to a manageable level, the move a bit more and repeat.
When you are eventually down and hopefully you have not wet yourself at this time, I’m not embarrassed to say this has happened more than once, which is why we got hold of a couple of pee bottles that make life a million times better.
The long and short of it is that this is a bloody painful process, recovery is ver slow, if things need adjustments then insist on a general anaesthetic, trust me on this, local anaesthetics don’t cover this and the pain of getting things adjusted will bring you to a level where you will hope that they would just kill you and end it.
Beathing hurts, the raise and fall of the chest brings pain from say 4/10 to easily 7-8/10, these little things make a hell of a difference to life, so you try to shallow breathe.
Coughing is a real killer, easily takes pain from what I have which is constantly say 4/10 to easily 12/10, if you are upright, prey that someone will catch you, you will lose all control of your body.
This is basically zero mobility.
Mainly due to the pain, basically bedridden now, but even in bed, I cannot move, going from horizontal to vertical can take me 20-30 minutes and with mind crunching pain levels, basically I’m on my side in bed, turning on to my back is a bloody nightmare, the pressure on my stomach by basic gravity is too much handle, so that’s out, and I’m not kidding when I say you spend most of the day trying to sleep, and if you get 30 minutes, then that will be brilliant.
A good day is being totally immobile, with the amount of pain I am in, you basically don’t want to move which is kind of not what the doctors want, but as it’s not them that is in pain, my thoughts here are rest, recovery, have the pain reduce, then get mobile.
Back 2 steps for every gain forward, well that’s what it feels like anyway.
This is a very slow process.
One thing that is very surprising, but it effects so much is that the Chemo has totally killed my saliva glands, it’s now the 4th day with dry mouth and throat, things now starting to hurt, they tell you that the radiotherapy will do this, well not in my case, so the off shoot of this is, you are constantly drinking, you will eat less, flavors change.
For me plain water is the worst, for me that tastes, and I’m only guessing here, but imagine licking the bottom of a full ashtray, that’s what water tastes like, so even orange squash tastes like orange flavoured ashtrays, I find coke bareable, strong flavors like ginger ear and red ball quite nice but nothings perfect.
Eating has totally gone down hill, good for weight loss, also bad for weight loss, basically losing weight means your basically not as healthy, they, as in the consultants want you to keep the weight up, thankfully this is the only good thing about the PEG, you by this time will be given loads of these ensure high protein milkshakes, I became very sick of these, now with the PEG, you just push one in every night followed by flushing water and job done.
Everyone goes on about staying heathy will increase the time it takes you to fully recover.
I cannot wash myself, pathetic as this sounds but I cannot twist, bend over, stretch, or even move without being in a lot of pain.
You are not allowed to get the PEG area wet at all for 14 days.
We tried sitting in the bath on a stool once and having water up to my knees and basically having a flannel wash, which kind of works, only problem is, this is winter, I was shivering more than I was remotely warm, so for me a flannel wash in bed was a million times better, over quicker and with a lot less movement being required.
I should also quickly say here that you cannot use normals soaps, everything has to be totally chemical free, we use Dove soap and was told that’s not allowed, basically look down tha baby isles in the supermarkets for the very basics.
Around the actual PEG site needs cleaning, for me this had to be done by myself, I found that I could not do this in bed at all, so once a day a trip was made to the bathroom followed by 30 minutes recovery and then stand up with help supporting me and using a mirror, some cotton wool balls and warm water, clean around the entry site, the first few days there will be some seepage, sometimes a little blood, sometimes other stuff.
This will hurt, but by doing it yourself, you can manage the level of pain that you are in so it’s well worth the hassle of going to the bathroom.
The basics hear are you are going to be a little stinky, shave the underarms, wear the least clothes possible, I have found staying cool and controlling heat by how far the duvet travels up your legs was the best method
So, it’s basically not nice process at all, they tell you it’s a painless process – BOLLOCKS.
Last week I was mobile, working on my office, making shelves, trying to get ham radio equipment and failing but mobile and in zero pain, a few days later I’m in constant pain, 99% bed ridden.
I have thought about a few things over the course of this treatment, basically if this cancer ever comes back, then I am definitely not going back through this again, if I had known what it was like or going to be like before I was diagnosed, I should not let it get this far, everything the doctors have done has caused uncontrollable pain, sickness and turned be into a pathetic person, I would have preferred the small amount of pain that I was in, I would have only had 6-12 months, but they would have been happier timed.
I have also been very stressed out lately, and yes stress equals pain, been scammed twice now on eBay, because of the new ruling that PayPall and eBay have brought out a few months back, the ones that no one read and just clicked except to, well if the seller vanishes then your money goes with it, PayPal is basically not as safe anymore.
So the long and short of it now is I am down £1500, which there is no way to replace, and nothing to show for it, so if anyone has a stupidly cheap Yaesu FT-2000 then please let me know, but it needs to be very stupidly cheap.
Other thing have stressed me, the new office is so near completion, little thing like I ran out of a certain size Kreg screw has ground me to a halt, that means another trip to flea bay.
The cost of wood is just killing me also, don’t know if it’s Brecksit or lack of containers, but even floorboards that I need for window ledges and hiding some lights has turned projects that normally take 3 days, well 6 months later and still waiting to even start the jobs.
So this has turned into salad off everything and not just the PEG cockup.
Sorry about this…