Week 7 Reflections - 11 days post treatment

Hi I’m new on here , hope your journey gets easier, my daughter is having the same problem with the poos , they did give her tablets at chemo but they don’t seem to be working, hopefully she will keep hydrated and she is phoning hospital Monday, best wishes x

Hello Pottingshead 

I'm sorry that your daughter is going through this journey but how fabulous to have such a supportive mum!

In the early days of my treatment and for a couple of weeks - I ended up living on toast and jelly babies..   I hope your daughter finds something that works for her.

Take care

Ali

Hi Ali,

Your updates are always welcomed and so glad to know that things are gradually moving forward for you in terms of symptoms and pain. Coming off the morphine is a big milestone.  Your positive energy and  self care are always an inspiration.

It is still very early days for you and despite finishing treatment you are still far from out of the woods in terms of bowel control and healing so I know what you mean about kind and well meaning friends thinking that’s it now!

You can always come on the forum for a much needed moan about the unpleasant symptoms and of course the psychological impact which can keep hitting in waves.

Thanks as always for sharing your journey and so good that the light is appearing at last. Xx

Hi Ali

So pleased things are moving in the right direction. Completely understand the friends thing, even though I know for the most part they are doing what they think is best it can be bloody annoying. Just come on here and moan about what ever you want. Sending hugs. Xx

Hi Pottingshead,

 I’m sorry that your daughter has this diagnosis and is experiencing these symptoms. I hope the team will be able to give some helpful advice tomorrow. I really hope she is able to keep hydrated in the meantime.  I’m sure it’s distressing for both of you and you are clearly being wonderfully supportive. 
Xx

Hi MrsBadass ,

Great to hear things are improving somewhat. I’m sure your bowels will start to settle down soon, fingers crossed, often it’s the last of the side effects to subside but you’ll get there I’m sure. Hopefully as you’ve said getting back on the HRT will make a difference also. 

Please know if you feel the need for a moan our lovely people here will lend an ear & completely understand where you’re coming from. 

Nicola 

Hi Pottingshead , 

Firstly welcome to the MacMillan Online Community although I’m so sorry to hear of your daughter’s recent diagnosis. Was it loperamide that she was prescribed for the loose bowel movements? Hopefully she’ll get something on Monday that will help as you quickly feel really washed out when you’re going to the loo so much. 

Nicola 

Hello Ali

Ah yes, the dreaded toxic positivity!  It was covered here on MacMillan's site with some pointers in coping
https://community.macmillan.org.uk/cancer-blogs/b/community_news/posts/toxic-positivity-talking-about-cancer?

I think I realised that sometimes people are positive to cope with their own feelings of helplessness (and they genuinely don't know what to say) and afterwards they leave feeling better in themselves but you feel resentful and full of all the things you have been unable to share.  Ask any cancer patient and listening to how they feel and what they are experiencing is key to them really feeling better.  I have lost count of the number of times I have been told how well I look!

I am so pleased that you seem to be through to the other side; I know the loose and urgent bowel movements are an absolute pain but they do get better; maybe you won't go back to exactly as you were before but it will be a lot better than right now, you are very early in the recovery.  I stopped morphine too, three weeks after treatment ended.  I couldn't get the balance between morphine, constipation and Laxido right and I thought that anything was better than the constipation.

Now just take your own excellent advice and be kind to yourself - it is very early days!

Irene xx

Hello Pottingshead

It must be so hard watching your daughter going through this and I am so pleased she has your support.  When I was having treatment I had diarrhoea all the time and I am not sure if it was the chemo or the radiotherapy that caused it.  If your daughter has finished treatment and isn't on opioid drugs (morphine, co-codamol both cause sluggish bowels) then it is a matter of time and waiting until her bowel recovers.  It is a good idea to keep her treating team involved at all times, they are normally very responsive and may be able to help with medication.

Please let us know how she gets on.

Irene xx

I actually felt the article on toxic positivity was a little bit unfair - like most people I've been on both sides, and I found it difficult to know what the person with cancer wants to hear. 

When it was me who had the cancer I absolutely didn't want to hear anybody giving me the 'Poor you, how terrible for you' treatment - I felt I needed a strong attitude to get through, and what I wanted was people keeping me up while I staggered through this really tough time.

I was just desperate for some optimism, unrealistic or otherwise, to redress the balance of frantic  'I'm going to die' thoughts in my head.