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Hi Prettypinkroses,

I’m so sorry that you’re feeling so unwell. Unfortunately you’re now experiencing the brutal end of this treatment. Most of us have been there at some point either towards the end or shortly after treatment has finished. At my worst I was either laying on the sofa, in a salt bath (this is often where I was most comfortable) or in bed, I did absolutely nothing.

Regarding the Movicol, how many are you taking per day? I was advised, by an A&E Dr that I could take 4 per day if needed, I only ever got up to taking 2 & they did the trick clearing everything quickly! Before this I was spending up to 3 hours at a time in the bathroom in so much pain. 

I would be very surprised if your period arrives as normal, a lot of us women are told that if we’re not already in menopause then the radiation fallout in our pelvis will probably put us in menopause during/after treatment. Personally I was experiencing menopausal symptoms before treatment & it brought them to an abrupt end which I’m definitely not sorry for. 

At this stage I really wouldn’t worry about trying to function outside of getting to & from your daily hospital appointments. Try & sleep as much as possible, I found this was the best way to get through the peak of my symptoms. 

I know it’s so difficult right now but try & focus on the end goal, although it’s awful & so painful just now in a couple of weeks you’ll begin healing & going through this is hopefully going to offer you a healthy, cancer free future where you can get back to doing all of the things you love. 

Also make your treating team aware that the pain relief regime you’re on just isn’t cutting it at the moment, there may be other options. The aim at this stage is to bring down your pain levels I didn’t manage to take anything that got me pain free at this stage, unable to take any opiate based pain relief I alternated paracetamol & ibuprofen 2 hourly. 

I really hope this last week passes quickly for you. Thinking of you.

Nicola

Thank you so much  Nikki65 for replying. I’m taking 2 sachets at a time and 6 in total per day. I gag with each one so 6 is all I can manage. Unfortunately I’ve had a bowel problem (not related to this) for 30 years. There is an entire section of my bowel that is smooth and has no peristaltic movement. That is to say it does not function like normal and I have no normal urge to go to the loo.  I was once hospitalised after 6 weeks of not going. Over the years I’ve tried all sorts as my only other option was major bowel surgery which could have left me with the opposite problem and I would be incontinent. In my normal life the only thing that worked was to take 10-12 senokot every 2 weeks which as you can imagine was agony. 

Of course this I cannot do now as passing compacted faeces would not be possible for obvious reasons. I made this abundantly clear to my team before I started treatment but they just glossed over it saying I’d probably have the opposite problem and be having diarrhoea. 

Im eating very little, not just because I’ve lost my appetite and feel nauseous but also to ensure there is less waste to pass. Most people would say eat more roughage but this in fact would make things far worse for me and just bung me up even more.  I have even tried Resolor (also know as prucalopride, a drug many people haven’t heard of that is used to treat idiopathic constipation that encourages peristalsis (movement) in the bowel. It does work for most people so those of you with persistent constipation should ask your GPS about this, it is not generally offered as it is very expensive). 

If I wasn’t so unwell with bloods and liver I think I’d be asking my oncologist for a reversible stoma just to get me through this but I think that it’s just too late for that and not safe because of the risk of infection. 

I know I’m currently in the “eye of the storm” I’m just going to have to cling on and keep going. Goodness it’s so so hard. My hat off to all of you that have done this and are here helping us! What we do without you!!! 

I am in with my team at 11am today so will discuss this with them and let you know how I get on. It’s just an added complication but just an unbearably painful one! Like there isn’t enough pain associated with this!! 

And my hair is falling out in great handfuls, thankfully I have lots of it and probably looks worse than it is because it’s so long but nonetheless you just think… give me a break with just one thing…. 

Sorry I suppose I’m offloading because I feel that I can’t with my husband. Poor chap is rushed off his feet running his business, looking after the girls and dog, his elderly mother, doing all the shopping, cooking, cleaning, gardening, ferrying me to appointments and looking after me. Plus he’s of the “stiff upper lip brigade” so empathy does not come naturally to him. 

Thank you for listening, understanding and replying. Xx  ps yes I spend hours and hours in a salt bath every day where I feel most comfortable. My radiologist said this is probably why the skin on the folds/creases by my legs etc is still so intact. So thank you for that tip! 

Hi prettypinkroses, I'm so sorry that you are feeling so terrible. I can only say what I kept saying to myself is every day that I get through is a day closer to getting better. I couldn't believe that the treatment was actually legal, I kept thinking that this would be considered torture if it was inflicted on a healthy person. It's amazing that we do get through it and it's a bit like child birth the memory of the pain does dull and you can get on with creating the good memories again. Keep insisting that you need help from your team, that's what they're there for. I hope today is a better one. Try to sleep as much as you can it'll make the days shorter and you can't feel the pain when you're asleep. At least that's what I told myself. Thinking of you xxx Marie 

Hi again Prettypinkroses,

Oh blimey! Juggling the right consistency of was bad enough without the added issues that you’re dealing with your long-term condition also! I’m really surprised that your oncologist being aware of your other condition & knowing the issues we have during this treatment that he/she didn’t suggest a temporary stoma prior to your treatment, it most likely would have made things a lot more comfortable for you.

It is also tough on the people around us, especially family members, but I’m sure if someone asked your hubby he’d say he’d do it 10 times over to have you well again & like you he’ll be keeping his eye on the prize & will see you through your recovery & hopefully back to good health. 

Feel free to offload here any time, it’s a safe place where we all completely understand & empathise with the position you’re in.… I do sympathise with the hair thing too, I felt mine was dropping out in handfuls at a couple of different stages although nobody else noticed but when it’s your hands it’s coming out into it’s an added stress isn’t it? 

Remember we’re always here when you need us. 

Nicola

Hi Lovely,

gosh you are going through it. Sending you the biggest hug. One thing my amazing radiotherapy coordinator reminded me of, is to remember that any drugs you are taking will have an effect on your stool consistency. For example if I took too much oramorph - it would block me up, too much nurofen - diarrhoea. I would sometimes use the oramorph to stave off diarrhoea and vice versa. I’d definitely ask to speak to a pain specialist as they will understand all the different drug interventions much better, and be able to give you something to help with the constipation. 

I also wonder if doing some self massage to aid the non existent peristalsis? There are some videos on you tube I believe. 

just remember - all you have to do is get through today. Tomorrow will come whatever you think, so don’t worry about it. 

lots of love xx

Hi Prettypinkroses, hope it went ok with your team today.

I was touched by your posts & the replies.  You wouldn’t wish this on your worst enemy but here you are having to go through this.

If you peek at my profile you’ll see my ongoing problems.  I’ve used a few tricks to get through it all & learned a few more.

On the loo when it hurt most, I got into the habit of smiling - it helped to relax any bits that could be relaxed.  Laughing worked better!

When I feel most like I need to poo (but know I don’t), I rub my fingers together or stroke a finger with a fingernail to focus on a different sensation - also helps me with most other kinds of pain.

I’ve stopped fighting exhaustion & rest more often between activities.  After 7 months in bed last year that’s frustrating but better than the alternatives, so at snail’s pace I’ve built up an exercise routine with a morning walk & table tennis 3x weekly.

When your skin heals & stops hurting, you’ll be able to be grateful for that even if other problems stop life being perfect.  You’ll reclaim your life & grow your own philosophy around any leftover problems.

Meanwhile I’d echo all the advice about sleeping as much as possible & trying not to feel guilty about your husband (who’s probably feeling guilty he can’t do more to help you).

Take care  xx  toni

Hi Prettypinkroses

My heart really does go out to you right now. It's all happening at once for you and you must be wondering just how much more you can take. You will get through this very soon and please try and focus on this. Take as much pain relief that is safe for you and rest. Try to take your mind off how you are feeling if you can. Take deep breaths and relax. You must try not to worry about hubby. It sounds as if he is doing well and probably pleased he is able to help.I know that my husband coped better by keeping busy. The more I asked him to do, the happier he was as it took his mind away from worrying about me. I felt the same as you regarding not wanting him to see me in such a bad way but he did  eventually tell me that he felt a little shut out. You are all under a lot of pressure right now. Your family will cope just fine I am sure. You just need to concentrate on your recovery now. Mecca's words are worth holding on to, as you really are getting closer to the point where you will start to feel better.  Hold on there!

Thinking of you, Serena x

Hello all Nikki65 Mecca Arightbumdeal Toni8776 Serena7 thank you all for your lovely replies. Just a quick update. They rushed my bloods through this morning and turns out my liver is in distress so they’ve stopped my Capecitabine (Xeloda) with immediate effect. I was so unwell at the clinic (I’m going privately) that they were considering calling an ambulance to send me to A&E but that’s the last place I’d want to go right now (my best friend is a consultant at our local hospital she said definitely don’t go if you can avoid it!). So at least we now know why I was feeling so awful. They’d been high the last two weeks so it’s not a surprise. This is what they are…

Alkaline Phosphatase   215   (guideline 35 - 104) 

Aspartate Transferase   176   (guideline 0 - 31)

Alanine Transferase   255   (guideline 10 - 35) 

Gamna GT   266   (guideline 63 - 83)

My bloods had also dropped again Neutrophils 1.1 so not neutropenic but on the way. 

Im obviously concerned this will impact my chances of recovery but they say there’s enough Capecitabine left in my system to get me through the last 4 days of radio. My onco literally just called and is extremely positive this will not impact my last 4 days. Phew! He said that I’m in the “eye of the storm” right now and radio symptoms will get a bit worse before they get better but at least stopping the chemo will stop me feeling so dreadfully unwell  

So sorry to be so utterly hopeless and sorry for myself but putting on my big girl pants now (metaphorically) and getting these last 4 days done!!

Love to all 

M x 

Prettypinkroses  “…utterly hopeless and sorry for myself “??  You don’t seem like that at all!  All of us bum belle bees have been through a bad time, but you have more to cope with than most…

Hope your liver can now finish this last week of treatment without any more problems!  xxx  toni

Mecca  Hello Marie, This is literally just what my consultant friend said (she’s head of plastics for cancer patients ie cutting out cancers and reconstruction). She warned me that it would be utter torture and I would actually feel at times like I might be dying. She was right! It’s an extraordinary and extreme treatment isn’t it? You wonder how on earth it can be considered an acceptable and legal treatment. I always thought I had a high pain threshold (absolutely appalling at feeling sick… literally cannot handle that) but pain I could always handle. Pah! Not anymore… holy moly it is indeed torture!!! But like you say… tomorrow is another day. I’ve been up half the night with burning pain but not bothered as I can sleep all day. I suppose a lot of it is because it isn’t normal. A sore arm, a broken leg. You can see it. Pop a cast on. But with this, your most sensitive inner bits blasted to hell and back and ghastly scary tumours we can’t see or understand. It just makes it all the more scary. But it clearly works because look at all of you lovely ladies! Here to tell the tale and help us! Thank goodness!!!! Xxx