Hello MellySqu1T,

                       l think your chosen name gives a fair indication of your journey thus far, l can recognise the reasoning behind the word choice, very akin to toddler speak and in a way that is where your bowel and body have regressed back to, so its like starting out all over again but more difficult this time since growing up was a changing new experience, this time round its knowing what you have lost and the despair of not seeming to be able to find it again.

Chemo and Radio are not precise sciences and they do job on your body, invaders,defenders and any bystanders, they do thelot and collateral damage can be widespread,long term or permanant.Throw into that mix bowel excision and rejoin into what was previously a chain of compatible structures all working in harmony, and then becomes strangers that have to relearn interaction wit each other to create a whole new, and suddenly multiple years do not seem such an unreasonable ask in order to get back onto the familar ground upon which you previously stood

l write this as a now 73 year old ten year survivor of stage four bowel cancer with 60% excision of liver, 8 weeks radio and capecetebine pre surgery , stoma, 12 weeks of oxaliplatin post,all of which in their own unique ways robbed me of bits of my former self, Reversal at 18 months led to me making the acquaiintance of a new character in my life. For the following 3.5 years it ran on rocket fuel so l named it Vesuviarse.We had frequent meetings where multiple motions were passed, up to 40 a day until finally the eruptions ran out of energy and subsided. it is now reduced to the odd rumble from escaping gas

So heres the thing, l decided early on that the post cancer effects have to live with me,not the other way about. l had a tussle with my control centre until we reached the agreement that it only informed me of any new conditions and stopped constantly reminding me of existing ones, so the only time l am aware of the neuropathy in my feet is when l lie in bed before falling asleep.It ceased to constantly inform me that l was tired, its only allowed to communicate that l am about to collapse from exhaustion, and the threshold for that is close to 99%.

For everything else l come up with work rounds to enable me to continue, not to come up with reasons why l shouldn't, thankfully my hips were replaced just before my diagnosis, my shoulders are now shot with pins and needles running down into my hand, but if l lift above my head its slow and steady and no jerky movements.l was fortunate to have the motivation and necessity of having livestock that needed daily support so this was a big driver in my recovery.,l am not at all  frail, if anything stronger and more determined than before,l had that motivation that said never look back only forward.

Reading your post l realise that you are coming from a very low point and have probably run down down your reserves of hope for your future with so many things combining to make progress look increasingly difficult.After treatment ends you can be cast adrift from the external support you hasd access to whilst undergoing treatment. From here on in this is about you, and its a lot to carry on your shoulders, but if you don.t make things happen and the changes you feel need too, then no one else is going too.Its up to you to argue a stronger positive case to your doctors, up to you to seek out those that can assist, they will not come looking for you, meeting others in similar positions or those that have been through it can help--have you a local Maggies centre you could visit?.Realising that where you are today is not where you could be tomorrow is the start of future possibilities

Your body still has time to return to closer to where it was before, and although in your mind it seems like a lifetime, in the scheme of things its really not,recuperation is ongoing, transformation can take a while longer.

l could have wrote poor you and sympathised with you, but thats not much help for changing your future.l completly understand where you are and can understand and empathise, but any change will come to pass largely by your own actions, albeit by getting others to act in unison.Any one who has come through what you have will have an inner strength tohave got this far, so l would say trust yourself, trust your body and trust in the belief.that you can make a future difference

Oh, did l say it will be easy? Ha, it will never be that,just so worth it when you can make it happen.

l hope you can,

David