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Friday 25 September 2015

Rectal cancer one year on, seven months since APR surgery and pics from a few outings

It's five weeks since my last chemo and in fact that's it finished for now, unless I need more in the future. It was most kind of the hospital to bother to let me know that they'd decided that I didn't need the last treatment. The last time I mentioned it here on my blog I'd said that my last session was cancelled due to my platelet count being too low, and the hospital said they'd phone to reschedule, which never happened. I had to phone them to find this out! I had been wondering what was going on as they'd already given me an appt with the Oncologist for my apres chemo discussion and an appt for a Petscan had arrived in the post for 1st October. So I've now had 10 treatments out of the original 12 I was supposed to have.

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 liver spots freckles.....

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. 

30 comments:

  1. I've been reading and following your blog throughout this dreadful year..and I think you are doing a great thing telling how it is.
    Depression does seem likely, but now you have recognised it, and can see what makes you happier, I hope you can fight it off.

    keep taking the excellent pictures :)

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    1. Thanks so much Red - yes I think from googling some more it is likely depression. But I feel a weight has lifted now that that is probably it! Let's hope it lasts. :-)

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  2. All so interesting, Mandy, and I'm surprised at how many things seem familiar although obviously you have had a much more drastic and dramatic experience than I. So glad the chemo has come to the end and everything crossed for good scan results next month. xxx

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    1. Hi Sandra - I'm not surprised by the amount of surgery you have had in recent years that a lot sounds familiar. Don't denigrate what you have been through - I've been in awe of what crap you've had to deal with. Take care and thanks so much for commenting. xx

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  3. Thank you sweet Mandy for the update and the wonderfully delightful outing photos. I really want an Ice Cream Cone now but at 4am in the morning it might be a little hard to find though, Love Ya

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    1. Virgil my friend, I hope you've had that ice cream by now! Love you too. xx

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  4. You know what? I'm not at all surprised you're feeling tired etc after all that you've been through. It's been a hum-dinger of a year for you (I can't believe it's a year ago already) and your body will be pretty washed-out physically, not to mention all the mental and emotional stuff. Not helped by you not getting all the right info at the right time- it does make such a difference, and feeling deflated after the end of the treatment is rotten. Be gentle with yourself- time is a great healer. I do so admire you for documenting everything so honestly. It was a brave thing to do and I am sure it will have helped others in the same situation XX

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    1. Thanks for the uplifting comment, CT. I've googled some more and apparently it's quite common to feel like this when the treatment is over - a sort of PTSD when all the adrenaline and being fired up to deal with the appointments, tests, scans, treatment etc is over, many people just crash. Not feeling elated like you think you should when chemo is 'over' sounds common too. So I feel a huge relief already and have just spent a good fun hour doing some retail therapy.... in the garden centre. :-) xx

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  5. I agree that depression is likely, and who could blame you? It's a hard one for people to understand as there are so few outward signs.
    However it's lovely to see you getting out and about and hopefully you will pick up as time moves on.
    Keeping fingers crossed for the first, hoping it's all just routine.
    Take care

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    1. Hi D-woman and thanks very much. I'm not used to being depressed (lucky me) so I didn't even think about it until this morning and feel better already knowing that's most likely what it is. I've just been to the garden centre and bought some new plants to have a revamp of my shady flower beds (with help from K to do the heavy bits), and bought some mini plants of winter lettuce which I'm about to go and plant in my cold frame in the veg patch when I've finished my cuppa! xx

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    2. Ah, garden centres are always good for a pick you up. We are fortunate that there are very few here as we used to spend too much when bored. But now we have friends who have a nursery...and they are moving close to us next year. Oh dear....good job we don't have time to get bored

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    3. Haha about not having time to feel bored.... I've never felt bored since I moved here! I hear all these people in Brittany on Facebook and forums moaning about boredom in winter and I always have as many garden jobs in winter as in summer! I have been very good not buying more plants as I have too many but trying to revamp a bit with more drought resistant plants (we've just taken more lavender cuttings) - anything to try to reduce the watering during the dry periods in summer. But I do like a good mooch in a garden centre, although they are not as good as the UK in terms of those gift sections.

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  6. You're giving such a gift to others in your situation! Having dealt with occasional bouts of depression, you have classic symptoms bit as a previous commenter pointed out, now you know, you can force yourself to deal with it. Sending positive vibes to both of you!

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    1. Thanks so much Marianne - I consider myself very lucky to not have dealt with depression, other than one winter when I had SAD (Seasonal Affective Disorder). I dealt with that by knitting like a demon for about three months!! Luckily never had it since but do take Vit D sometimes as that can help those of us with little sun in winter to stave off this kind of thing. Anyway I feel a lot better having realised that is most likely why I have been feeling so blah of late! Thanks my friend on behalf of both of us. xx

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  7. Love you Mandy. You are such an inspiration and your photos are wonderful. Blessings to you from my heart.

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    1. Aww Sandra, that's such a sweet comment. Thank you so much you lovely lady. xx

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  8. Oh Mandy, my heart weeps for you. You have been so brave throughout such an awful time. I truly, truly wish you all the best and hope everything starts to improve and heal. It's such a lift to see you out and about and good to hear that it held you feel better. Big friendly hugs for you and K.

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    1. Thanks so much Stephen, what a lovely comment. Don't worry, I'm still capable of enjoying ice cream by the seaside! It's not all bad. :-) xx

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  9. Message for you from my Ma who has been following your story over this past year. She thinks you are amazing, brave, open and honest and she has thought of you often over the past year and continues to do so and sends you healing thoughts. She also said being outside among nature and plants is such a healing thing and your strong connection with it is bound to help- I know gardening is a powerful therapy in helping with depression.

    Re the depression- it could be that it's part of the healing process. Your body and mind can start to come down off high alert now and begin to relax and put itself back together, away from the hospital and the chemical treatments. Perhaps this slump is a natural part of the movement back to health (I know that sounds back to front but I have seen this before professionally and it is very common).

    Forgot to say in my last, I've whispered a prayer for your OH too- you're so right about people not always seeing the carer. He has been through a lot and I know he is your rock. He is in our thoughts as are you XX

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    1. Your ma is lovely - that's so kind of her! Tell her thank you from me please and that she's cheered me up no end to hear this.

      I know gardening really helps to lift spirits so I'm going to try to do a little out there every day (weather permitting) because I know that even if I don't feel like it, I will always feel better after I've done something, no matter how trivial. Even in winter I often have to force myself to get out and do things but always feel great once I do!

      I have passed your msg on to K and he thanks you as do I. xx

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  10. Mandy, you have gone through so much this last year, its not surprising you are suffering from depression.Just take each day as it comes and enjoy the sunshine we are having at the moment.You are looking absolutely fab in your photos.It is hard on the carers, loved ones who are sharing your pain as they want to be able to help yet feel helpless that they cant.Sending you both lots of hugs.Sabine and Jack

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    1. Thanks so much Sabine and Jack - you have been great help cheering me along and I know you haven't had the easiest of times in the last year either. Glad to say the sunshine has helped and I've been out in the garden the last two days feeling a lot better in myself. I've read a lot about 'after your treatment' now on the net as that was one stage in this 'journey' I hadn't got to reading up about yet, so it's made it all a lot clearer. I'm just happy that there are a few things I can do now to help K like bring him his tea in bed and let the chickens out, which means a lot to him as he is not a morning person. Plus I cook dinner at least half the time now. :-) xx

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  11. Its not surprising you may be suffering from depression after all you have been through this year. I really do admire your honesty and bravery in sharing your experiences. It must have been so difficult to do this at times.

    Such a shame too that you have had to do so much of your own research into side-effects etc. So pleased to hear that you have been able to get out and about and enjoy the sunshine - probably the best cure for helping fight off depression.

    I so feel for you and send many positive thoughts your way. I will be thinking of you on the 1st and hope that all goes well with the scan. Lots of hugs to you and K too.

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    1. Thanks very much Ragged Robin. Looking back I'm surprised I haven't felt more down! The good thing is I have felt a lot better since writing this all down and realising why I am feeling a bit low, and that it is all quite normal. I have been enjoying the sun and yesterday we got out for quite a long walk beside a lake with lots of dragonflies so I had a great time! Photography and my buggy friends help take my mind off the tingly feet too. :-) xx

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  12. Really good to see you've had some nice days out.

    It's not surprising that you were left feeling a bit deflated at the end of the treatment and it's interesting that you liken it to PTSD as you've been through so much this past year, both you and K.
    The one thing that strikes me is the lack of info you've been given so you've had to do so much searching on the internet. Are there no support things like Macmillan's available in France that you could have been put in touch with by the hospital who treated you? I only ask because I know of so many people in the UK who relied so much on the likes of Macmillan while undergoing treatment and afterwards.
    Anyway, it sounds like you have felt better by writing all this down and the good weather really helps too.

    Philippa xx

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    1. Thanks Philippa - trying to make the most of the last of the nice weather! I've felt a lot better these last few days so I think getting this off my chest and googling after chemo treatment depression has helped me lots.

      If there is anything like Macmillan here I wouldn't know, because nobody tells you anything. I have learned over the years here that information is NEVER given unless you ask for it - and in most cases you don't know that the thing exists in order to ask..... a very strange French trait. :-(

      From talking to others here they were given little help after treatment or for any outside support etc - think the attitude is we did our medical bit now go live with the consequences and put up with it. I'm left with no one to call re medical worries after surgery except the stoma nurse! The surgeon washed his hands of me months ago and as much as said so. :-(

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  13. Sorry for the late comment Mandy, pesky connection's still not right. (Though I have managed to get into the comment box this time, so thing's might be improving.;-) )
    I'm not at all surprised you feel depressed, you've taken a real battering this last year and it doesn't help being kept in the dark by the hospital.
    I'm glad the chemo's finished for you now and it's great to see you out and about.
    Sending you loads more positive vibes.xx

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    1. Oh don't worry about it, Deb! Thanks for commenting, I appreciate it. I have felt pretty good this week so really made the most of it getting out and about a bit, and doing some gardening. Have loads to update on the blog - just need to find the time to do it. I wasn't going to waste nice sunshine but it's cloudy now so I can start going through all my recent photos! xx

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  14. After my mastectomy, which was a simple op and no further treatment - I remember for a long time I spent the afternoons sleeping on the sofa with Sparkles. VERY independent tomcat not a lap cat - who had a built in radar for nap time!

    Told me surgeon I felt as if my chest would split open every time I sneezed or laughed - and he explained. 2 layers of stitches and then the butterfly sutures - and that reassured me.

    Not medical advice but for the neuropathy, calcium and magnesium and or Vitamin B supplements?

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  15. Hi Diana - thanks for the info - it's helpful hearing your experience. I too have my faithful companions who feel the need to nap with mum whenever I'm in bed or on the sofa! Only three can be a bit tiresome at times. Interesting about the stitches having two layers; I wonder if I had them too? I guess the inner layer are self dissolving!

    I'm seeing my oncologist on Monday so I'm going to ask if there are any vits or drugs which can help with the neuropathy. I've read a lot online and most people said the few drugs which might help didn't do anything, but a few people felt they helped a bit. So it's worth trying. Cheers. :-)

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