I was left feeling very deflated as, not that I wanted the final chemo (who would?), I wanted to feel that elation of it being over, so I felt very cheated. I haven't been feeling that good lately so there is no feeling of cheer, more the beginnings of dread in case the Petscan finds anything untoward. And even if it is clear, now what? I guess I spend the rest of my life, however long that may be, hoping it doesn't come back. Yes I know this is not the 'right' attitude but I've been feeling more tired and lethargic of late than I was a couple of weeks after the last chemo. I can't remember exact dates but it's been almost a year since the Proctologist said there was something dodgy up my bum and ordered my colonoscopy for 6 October 2014, so I'm probably feeling in a slump because I've gone through so much in the last year and now my body and I don't know what to do with ourselves. Dragging myself out of bed is a huge chore some days and in the last week I've had precisely two days where I didn't spend at least a good part of the day in bed, sleeping or reading. I now think it's possible I'm suffering depression without having realised it, as although I don't feel 'depressed' per se, there are other symptoms such as fatigue, insomnia, energy loss, change of mood, blah blah blah. It's probably not surprising. But a 'good day' helps hugely and yesterday afternoon after I'd written most of this was one of those good days, and I was left feeling that I had actually achieved something and slept really well for the first time in ages.
I have bad peripheral neuropathy in my feet and lower legs and it's now attacking my hands. It started as a slight numbness in my finger tips and holding things like knives and forks and using pressure causes discomfort. Now the tingling has started but it is very mild compared to what I feel in my feet. I have balance issues due to the numbness and tingling in my feet and wobble a lot, particularly when I first stand up. I've also started dropping things. This is due to the drug Oxaliplatin and this is the chronic neuropathy that I wasn't told about. I was warned in advance about the acute neuropathy which is generally a reaction to cold and which is worse straight after the chemo session and gradually wears off over a week or two. In my case it took about three weeks after my last chemo, but at the beginning it only took about a week. That was easily manageable by not touching cold things and wearing gloves to get things out of the fridge, and getting K to do anything involving cold water like washing vegetables. The chronic neuropathy builds up over time and gets worse after the chemo ends, and can take months before it starts to get better. That's the best case scenario. It could take a year, and for some people, it never goes away. It's one of the hardest things to deal with because pain killers don't help as it's not pain. But it's bloody horrible and is drives me nuts at times. The one thing which helps me block it out is to get out and enjoy what I enjoy doing - taking photos, watching wildlife, doing a bit of gardening - a little of this and I realise I have not been thinking about the unpleasant feelings so much. I've just got to push myself to get out and DO these things!
I'll update about the after-effects of my surgery at the end; however let's back up a few weeks to when I felt a bit better than I do now! First we went out just for a walk which wasn't a long one but on the side of a steep hill beside a river valley. I was expecting sloping paths but nope, I had to get up some really big concrete steps which was extremely hard work given my leg muscles had had very little work for months! Thankfully there was a middle level which was flat so we walked along that and then found a sloping path up to the higher level where there were some lovely views over the Couesnon valley. I did take a few photos but there are none of me so I'm not posting them here in this post.
A few days later we went to the coast - the weather had perked up and it was lovely and sunny. The pictures will speak for themselves but we did a bit of walking around a couple of headlands. Not much in the way of butterflies and few wildflowers in bloom either (probably why!), which was a bit surprising given the rain we'd had back in August. I thought it would be blooming. Anyway it was a lovely day out and I got some more walking in, although I gave up on one of the tracks as it was rather up and down with rough rocky ground. I think I'll leave that kind of walking for another time when I'm feeling stronger!
As I hate most photos of me I've given most of these effects with names such as Aged, Antique, Retro and Grandma's Lemonade, which is about how I feel right now. Not lemonade, silly, but I'm well old enough to be a granny and feel more like great grandmother right now!
|"Don't do it!"|
|Waiting to order moules frites by the seaside.|
|Not sure why I'm pulling a face at my chip....|
|Not sure why I'm wearing reading glasses to eat an ice cream.....|
|Aged Photo highlights the |
|This was high tide and first time I've seen loads of seaweed like this, it wasn't |
very nice and the water felt freezing, although there were people swimming.
I think it was the neuropathy in my feet which made it feel so cold.
Last week I had lunch out with some friends, including one who is not in the photo here. There aren't any photos of me in the restaurant so here's one of me afterwards at my friends' house. I'm sure they won't mind appearing in my blog.
|Dave, Janet and me in the middle, |
with me looking uber pale compared to Dave with his suntan!
Strangely some days I perk up completely like a few days ago when the sun was shining so I asked Keith after lunch if we could go out for a walk, which he was of course happy to do. We spent several hours out spotting wasp spiders and watching butterflies feeding on blackberries and it was simple and just perfect.
Post APR surgery seven months on
A little while ago I tried searching on the web to see how other people who had had the same surgery as me had got on months later. I particularly wanted to know how long it took them after the op before they could sit comfortably. I found very little information although it seemed everyone could sit comfortably a lot sooner than me, but bear in mind I had the set back of the non-abscess. There are plenty of forums out there but it seems that either people don't go back to post much after they have got better (and who can blame them for wanting to forget about it all), or worse, I guess in some cases people didn't make it. There are a few medical sites which give a decent amount of info about the things that can go wrong after this kind of surgery - most of which I was not told about by my medical team. So I decided I would document how it's going for me.
A surprising thing I found during this research was that according to some UK and US sites they do not recommend sitting on doughnut cushions after the op. Well obviously that isn't the case in France. I'm still sitting on them. I did try not to after I'd read that apparently it can cause more pain and hinder healing (without explaining why), but after a week I had more pain and was back on the codeine again and went back to my doughnuts. One site said that the perineal wound was different from other surgical wounds as it has to heal from the inside as well as the outside. That I don't understand at all as surely all wounds that cut deeply into your body need to heal all the way through the cut area, such as my belly wound which presumably went through my lower abdominal muscles. I get so frustrated at info given that doesn't explain WHY! And in case you were wondering, I take my doughnut cushions with me to restaurants! They go everywhere with me.....
For months since the non-abscess started healing my butt area has felt very tight - I guess this was partly the healing process but also I have less skin there as much has been chopped out and I have less depth of skin in my butt crack which feels really weird, so I always have this rather irrational fear that if I bend over or squat, my perineal wound is going to split open! I saw my stoma nurse recently and she suggested using a moisturising cream to massage into the scar and this seems to be helping a little. Or maybe it's just time helping/healing, or both. I also have a numb patch next to the scar which I've had ever since they uncoupled me from the epidural machine. And other patches by the scar which hurt when I touch them. Sneezing is not too bad but even the slightest cough hurts my no longer there anal/rectal area really badly, so I live in dread of catching a cold as I don't know what I'd do if I had a real cough.
As for my belly wound, that one healed up nicely; the scar looks neat and tidy and is more white now than pink and nice and smooth. I get a few twinges now and again. However I'm very aware of the possibility of getting a parastomal hernia. Again nobody said a word to me about this in the hospital, yet this is a common occurence and most people who do get hernias around their stomas get them in the first year after surgery. I do have a slight lump which concerns me but the stoma nurse said that if it was the beginning of a hernia, it was very small. She said to ask the Petscan doctor to check it out. I am being very sensible and always wear my corset when doing any work in the garden and rarely lift anything heavy. Not that I can do much garden work as I end up with a sore butt area!
Sometimes when I have been lying down and get up, I have to wait a little while bent over whilst I have this odd feeling that my lower body is rearranging itself in the area that was operated on and can't stand up straight and have to let this weird pain pass. It doesn't take long but I'm often walking slowly like an old lady for a few minutes before everything eases up and I get back to normal walking.
I have no problems dealing with my poo bag and it's probably the least of my worries, although of course it's much easier to deal with at home and I've yet to have to change or empty it in a public loo or anywhere other than home. I've had some pancaking issues (google it!) and wouldn't want that to happen whilst out and not near a loo. Clothes are a bit of a problem as most of my trousers and jeans are low(ish) waisted and I could really do with them being up around my waist for comfort, but who makes clothes with high waists any more? To hide the top of the bag when it is peeking above my trousers I wear a pregnancy belly band - this tip I got off the net. It helps to smooth out the top of the bag and then you can wear a tightish t-shirt without an outline showing. But I'm still most comfortable in stretch dance type pants as they seem more forgiving on my still sore bum, so that's often what I wear at home.
As for other issues - well I've seen my Urologist a number of times to try to work out why I have bladder problems and have had several tests which could be embarassing if I had any shame left any more, but I have none. Sticking a camera or a catheter up my urethra is no big deal any more! I was peeing too frequently and not seeming to pass enough and it never feels 'normal'. Apparently I have permanent nerve damage and there's not a lot they can do (I tried pills for an overactive bladder but it seemed to make it worse so I gave that up). But I've found it is getting a bit better as time goes by and this is something I can live with.
There are other issues caused by radiotherapy and surgery affecting 'ladies' parts', radiotherapy often inducing premature menopause in younger women - I already have reached menopause but radiotherapy does some pretty awful things to that area. I won't go into details but I'm trying some medication to see if that will help. Again nobody told me any of this and I've had to self diagnose from info given on the internet.
I think that's about summed it all up. Naively, partly because I had not been given any info about after the op and what to expect, I had thought I'd be back to normal by now, as normal as it gets after an op like this, of course. Now I know it could take years before all these things settle down.
And of course, it's not all about me either. There are two of us here who are going through this crap. Keith went to the periodontist earlier this week to get his teeth cleaned. I had to cancel my appointment because I wasn't sure when the chemo was going to happen and also it wasn't a good idea if my platelet count was still low as it meant I could bleed more easily. K explained to the dentist why I had cancelled. She then examined him and said his gums had receded. Apparently this can be caused by stress and fatigue! There was no need to ask him if he'd been suffering stress......
This isn't meant to be a whinge but more to help anyone reading this who also has been through the same or similar surgery and is wondering how others are coping. If anyone would like to get in touch to ask questions privately or just to talk, you can contact me using the 'Contact Me' form on the right hand column up near the top. I'd be happy to hear from you.