Colonoscopy 1 year after operation

I hope all goes well with you ! 

karenx

My experience to date is that you have to be very proactive and chase everything.

Went to my GP  with blood in poo early April - had urgent referal for colonoscopy, which was delayed due to strikes and lists etc. Should have been 2 weeks, was a month.    Tumour was found in May and I am only now starting treatment in August, with a similar diagnosis to yours, although that diagnosis might have gone up a stage by now.    I have had delays at every stage, be it every scan, appts with consultant, nurse, oncologist, every one delayed.  Totally frustrating and anxiety levels through the roof. 

I find that info is missing from letters, blood forms are not included (so need chasing) specialist nurses are hard to get hold of. 

You really have to be proactive and fight to be heard. 

To add insult to injury my postal poo test arrived a month ago (they are lowering the age for it in Wales).  If it had arrived 2 years ago it would have made a difference, however on the letter, it does say that there are delays with any referrals as a result of any positive test results.   They are issuing more tests, finding more cases, but don't have the resources to follow it up.

Get that colonoscopy follow up date sorted - I know you won't be looking forward to it (darn, I watched a whole iplayer series from my toilet). 

Don't slip through the net!

x

Hi Arsey

unbelievable!! It’s seems the norm ! Just to let you know the same happened to me re the postal poo test !

I even had a scan that I didn’t hear anything re the result phoned up secretary of consultant she ld me that it was nothing to worry about consultant would get back to me after had see to more urgent cancer patients  had result of poo original poo test that took ages to came  back had a letter to say that I needed colonoscopy , the dr who did the colonoscopy said it was a stage 1 and I wouldn’t need chemo !!!  This all took from seeing gp in February to having op in June !

I know what you mean about the specialist nurses too !!

just saying this so you know you’re not the only one I am sorry that you’re going through all this when it’s the last thing you need no wonder you are stressed!!  I hope everything goes well for you though ! 
Keep in touch if you want 

x 

I’m really sorry to hear about such negative experiences. I’m “lucky” in that I was diagnosed back in 2019, and had a much more positive experience. Unfortunately, I’ve had a secondary, followed by a further spread, so am now stage 4. I received a fit test through the post and asked my oncologist if I still needed to do it. We had to laugh because as she said, I can’t be more positive for bowel cancer! That’s why I feel lucky. I haven’t slipped through the cracks in the system. I hope those of you who are suffering with delays have the energy and drive to chase for everything. Back in 2019 I chased everyone at every stage, even though I probably didn’t need to. Wishing you all lots of luck.

Oh Jools63

i am so sorry to hear that, thank you for even taking the time to reply. I feel very humbled ,by you and everybody else who ho have taken the trouble to reply. Thank you . 

I m going to chase up today ,

jools63 I’m not normally lost for words but my heart goes out to you that you are now where you are , I hope that you are being well looked after. 

karen x 

Hi Sappy,I had a similar size of tumour and had a resection and Chemo.I was told I would have a colonoscopy after a year but a year has not passed yet.As you say you are not keen to have one as the movi prep is not pleasant but I shouldn't worry if your markers are all stable.My only symptom that I had bowel cancer was terrific bloating and pain after a bowel movement.Try not to worry as it sounds as if you are being monitored fairly regularly.I hope you are not having any after effects from the Chemo that they use to treat bowel cancer.Can I ask you a question as I don't know anyone else with bowel cancer...

I wonder if you have had any experience of what I'm having now 3 months after my Chemo finished.My feet go from being extremely cold and then very,very hot in bed especially in the night-time.Also my toes and the balls of my feet feel all uncomfortable and slightly numb.It is really difficult to sleep.I have been told its nerve damage by my GP.I feel really anxious that I will get worse and be disabled because of my cancer treatment.

I hope you stay well.

Hi Maria 

ibam experiencing other side effects but not that one It does sound like one of the side effects , I am so sorry you’re experiencing that , I would ask your gp to refer you to someone that could help you don’t just suffer there must be either ways of ntrolling it and managing it whether it be long term or short term . Although you are feeling anxious and who would blame you!! it probably doesn’t help what you’re going through . I’m sorry I am unable to help , perhaps somebody else might see this and give you better advice or post it as a new question. Whatever you do don’t be fobbed off even if it is something you have to live with ( I’m sorry to say that ) there must be ways and means of helping you manage it , even is it’s just to help you sleep through the night !

if I can help you in any other way please reach out 

Karen x 

Thank you so much Karen for replying.As I am sitting here my feet and lower legs are absolutely freezing inside but warm to the touch.I have on thick socks..I did have some reaction to cold when I was having my Oximaplatin when I went to the freezer in my hands but not ever in my feet.Did you have Oximaplatin chemo?

I have an appointment with the GP next week.abs hope for some help .Isnt it strange how some people have this peripheral neuropathy and some dont.

What other side effects are you having that I may be able to help you with or at least sympathise with?

Keep positive.RitaX

Hi Maria D. I had oxaliplatin back in 2017 and still suffer the effects in my feet now. They feel like they’re permanently sunburnt and like the skin is too tight for my feet. They’re quite numb in places but usually feel red hot and I sleep with them stuck out of the covers. I can still walk for miles but it’s a bit annoying - wish I’d spoken up earlier when they began prickling during chemo instead of trying to soldier on.

I found reflexology helped a bit but not on a permanent basis. Would be interested to hear how you get on at the doctors if you wouldn’t mind updating?

Take care

Karen x

Hi Karen,thanks for your reply.It sounds as if you have got a very similar problem to me but you dont mention your feet feeling ice cold as well.Last night was awful and I kept getting boiling hot and after 10 minutes or so freezing again.I feel so tired .I have not talked face to face with my GP yet but will let you know if he offers any help next Tuesday.I never had any funny feelings in my feet during chemo at all only in my hands.

I think I've said this before so will stop now.Its all very depressing unfortunately..

Rita