May I ask what peoples symptoms were before having a colonoscopy in terms of pain or bleeding or anything else? Was your bleeding small or large amounts? I’m having large amounts of bright red blood. It’s not just when I wipe it turns the whole toilet bowl water bright red and sometimes there’s blood clots. Pain is severe in my back passage too like a burning stinging and that’s not when I go to the toilet that’s just all of the time. If anything when I go to the toilet I get a relief from pain afterwards for a short time but then it returns. Ive also been anaemic for a while. I’m only in my 30s so GP has been sending me away for quite a few months despite me going back over and over again but I’ve finally been referred for a colonoscopy and waiting for an appointment now. Thank you 

Hi Daisy,  hopefully you won't have too long to wait for the colonoscopy now you have finally been referred..

A small amount of blood in the toilet bowl can look very alarming being bright red means it's fresh and not old [ dark coloured] blood. Haemorrhoids can be internal and external and capable of producing blood when having a BM...hopefully you will get some answers after the procedure. 

For me it was a marked change in my bowel habits, accompanied by distended stomach, low down period-type pains  [ hysterectomy 45 years ago]  sensation of needing to pass motion even after a BM. Five positive qFIT results and referred to Colorectal Consultant. Appointment for colonoscopy last June which had to be cancelled.. follow up appt missed until Nov colonoscopy 17th Dec 24 ...20 week waiting list for results.  There has been no change,  multiple BM,  pain, loss of appetite,  blood ( not all the time) the feeling of needing to have a BM.. seven times since 10 am..now 4.15 p.m

Thinking of you..

.

Hi tangoPotter and James4000...

Thanku tango for your kind words, care,support and understanding are vital for us all...a listening ear, a [virtual]  hand to hold...can help each of us..

Thinking of you both and everyone on this journey ️

Hi Tango

Hope all goes well with the breathing test for you. It's probably good that they're moving towards surgery for you soon. Hopefully a good sign in that they don't feel they need to do chemo first.

I'm doing OK. I have a lot happening very quickly now, which is a bit overwhelming. I have 3 appointments this week: another MRI as the radiologist at the 2nd hospital isn't satisfied with the scan (though the staff said it wasn't anything to worry about); then an ultrasound, as they want to check my throat (they said it's most likely nothing, but need to rule everything out - oh joy, please not any spread); then on Friday I have an appointment with the chemo team to do all the tests, prepare everything etc before starting treatment.

It has all been moving along well and rather reassuring, but this week already feels hugely daunting, as I'm worried they could now find complications. Can't get ahead of myself, but it is a lot happening very quickly, 3 appointments in 4 days on various different things, at 3 different locations.

Hi James4000... taking one day, one step at a time is essential for your wellbeing.. thinking about 3 appts, 3 locations within 4 days is overwhelming.. for anyone...

Be kind to yourself and concentrate on the fact that it's  'moving along well and rather reassuring '...your words xx

Hi James4000 and tangoPotter..

Just wanted to let you know I am thinking of you.. hopefully this week has not been too overwhelming James4000 and that you will receive positive news from your tests  ️

Thank you. Thinking of you too. I'm grateful for having met such lovely people on here.

I'm doing OK. Yesterday went well and was very encouraging news. Today, objectively probably fine (and ultrasound and small samples on some nodes elsewhere (neck/throat), which they think are nothing but have to check) but I didn't cope well. Hopefully past that now, but will see what they come back with- really hoping for no further complications, though 2 Oncologists have said its almost certainly nothing.

Friday is the pre-treatment meeting for chemo. Will no doubt be info overload. I'm so lucky my wife is very involved and supportive. It helps to have someone else to absorb all the information (along with many other things).

I shared news of my diagnosis with a handful of other friends and colleagues, which I always find hard, as I'm quite a private person in a lot of ways. But it has helped.

How are things looking for your next steps, Tango?

And Eastend, any update on your appointment or still in the waiting game for now?

Hi @anon365 

Have you been given a date for your colonoscopy yet?

Hoping that they'll find another cause and quickly identify the right treatment for you. If the news is not as positive, please do know that many of us have gone through this and whilst it is of course scary and at times overwhelming, there is often a huge amount that the medical professionals can do.

Morning James4000...well done to you on getting thru  the additional hurdles.. the past few days, the additional biopsies, so much information from various sources ... so glad you have such great support from your Wife. Overwhelming for her too but giving her love, support and care to you makes such a difference.  Well done for sharing your diagnosis with those close to you, not only an added support for you but another layer of understanding for your Wife..

Friday will be info overload, I'm sure, but being able to absorb and discuss it,  will hopefully ease the burden...even if only a little..

Still the waiting game for me, I spoke to the Medical secretary to the Colorectal consultant a couple of weeks ago.  Report is back from pathology,  now waiting for it to be seen and a letter or [possibly] phone call.  I will be patient,  the secretary is so helpful and caring, I see no point in calling her again, the department is terribly overstretched and there will be many others seeking a diagnosis...

Be thinking of you tomorrow, sending support and care  x

Sorry that I went abit quiet. I really appreciate your kind replies. 

Today I went in for my colonoscopy but they wasn’t able to do it. I was in too much pain. 

When they did an exam before I was told I’d get a general anaesthetic because of the level of pain I experienced but when I arrived today I was told no they don’t do that.

They tried to do it with with sedation but it was agony. I am in constant pain all the time anyway now. I think that’s the worst part for me currently the pain. I don’t remember when I didn’t feel in agony. It’s becoming hard for me to function in everyday life. 

I don’t know where I go from here if I’m unable to have the colonoscopy done. I do have an MRI scan referral and I am waiting for my appointment for that. The hospital today told me to go back to the GP. 

Has anyone had a similar experience? Unsure what I do next to find out what’s wrong. Has your pain levels been that bad? Will an MRI pick up what I need without the colonoscopy? 

I’m sending you all my best wishes on your own journeys and Im hoping the very best outcome for all of you x

Hi Daisy,  sorry to hear you were unable to have the colonoscopy done.  Previously I had the procedure without sedation.  It had to be stopped as I passed out from the pain,  the bowel was twisted. I had colonoscopy in December with sedation.  The procedure is always done with sedation in my local hospital now, thankfully I had no problems. An MRI can give many details, a colonoscopy is preferred by Colorectal Consultants as it's much more defined for diagnostic purposes.  G.A is seldom used due to the added cost/risk/time involved to the hospital and patient. 

Very best wishes to you, it may be worth discussing a small dose of oral sedation prior to the procedure.. good luck 

James4000 hi James  haven’t heard from you in a while hope your doing ok and things are going ok as well I know we are all on this long journey but there will be a finishing line that’s when we will be well again  wishing you well James and lots of love  xxx

James4000 hi James  haven’t heard from you in a while hope your doing ok and things are going ok as well I know we are all on this long journey but there will be a finishing line that’s when we will be well again  wishing you well James and lots of love  xxx

Hi Tango

Thanks. Sorry for being quiet for a bit. I'm in limbo of 2 weeks before starting chemo next Thursday. I'm obviously apprehensive but they do say this type doesn't usually have too many side effects and I've been told by Oncologists that there's a high chance it will significantly shrink the tumour. So I'm worried but cautiously optimistic.

My current fretting is my neck/throat. No news back on that  I was told by doctors it was very unlikely to be anything (a slightly enlarged lymph node and a 2nd, but that it was probably just fighting a cold - had a few over winter. I could really do without a second cancer.

 Jassoscared welcome to the thread and thank you for sharing your experiences. Scary times but great to meet another friendly face whose been through it all and come out strong.

Wish me luck for next week!

And Tango, thinking of you for your upcoming op.

X

James4000 hi James4000 I know what you mean there is always a big gap in avents I have had a few weeks with gaps too  but I think my op will be very soon towards the end of this month just need to get things over with even though I am scared I need my life back  it’s good that your chemo will shrink your tumour  we all wish you luck and love thinking of you please keep us informed about your journey xxxx

James 4000

Hello James ., I really do wish you luck for when you start Chemotherapy  next thursday. I do realise how you must be feeling  about this,it's a kinda bitter,sweet scenario isn't it,as in one hand your probably glad aa it is a start of treatments to get rid of your cancer ,but on the other hand you are scared witless of just how you and your body will cope ,as you haven't a clue as to hiw you and your body will feel,as our bodies are unique to us, and so our experiences can be very different to one another. 

I remember my first session if Chemotherapy, I was just sitting there like a deer in full headlights, I was extremely anxious and to be honest petrified, so scared hence ny user name on here. I was given anti sickness tablets before Chemotherapy, which were amazing ,worked so well  I never felt sick.  The Chemotherapy nurses and staff were amazing ,the first Chemotherapy session ,they sat with me as it was administered, I had a candular for the first one,but was told I'd need a pickling put into my arm  for the other 7 sessions.  It really wasn't as bad as I thought it was going to be. I had four then the Chemotherapy drug was  changed to paxitaxol.  That didn't agree with me at all,and had to be stopped.  Had to go home,and wait to speak to my oncologist, I never met him,because of covid, it was all just speaking on the phone. He eventually agreed to put me on another taxol Chemotherapy drug. That was tolerable, did have a few days of feeling tired,but I got though it, and as I said it was doable.  Then I had 15 sessions of radiotherapy,every day apart from weekends  over three weejs. That wasn't as bad as I thought either. First one I really didn't feel a thing. By the 5th one  it just felt like vetry mild sunburn . I was told to use E45 cream ,which helped. 

I do hope all goes well with your treatments,it really isn't as bad as I thought,and I kept telling myself ill get to ring that bell soon,and each treatment session I was getting closer  to that goal. Good luck with everything ,do let us know how it all goes .

Hi James4000... good to hear from you,  obviously been thinking of you

Stay strong for Thursday and optimistic re neck/throat xx

Hi All

Been quiet in here for a week or so.

I had my Picc line fitted and started chemo on Thursday. It's going OK.

Picc line was stressful as expected, and took a couple of efforts by the nurse, but we got there. Staff were lovely. First chemo in the hospital all fine, then sent away with a pump.

Symptoms mixed. Mostly ok. I had a high temp Friday so (by protocol) had to go to hospital. No drama, all OK, but a barrage of tests to make sure. Since nurse removed the pump yesterday I maybe feel a little worse? Kinda nausea but not feeling like vomiting. Hard to explain.

But I've carried on, had a an active weekend. Exhausted now!

Big first step for me, and while it's not easy, I'm grateful and cautiously optimistic.

Hi James4000,  so good to hear from you,  well done for staying positive and active.. although it is important to take care and not overdo things.. your body needs TLC right now..it has more than enough to cope with, be kind to yourself xx

Hi James4000 

Sounds like you are staying positive which is great, it's not an easy ride,I too remember getting my pic line in my arm,I onky had one vein that they could use,it wasn't easy ,but like you ,you just g et on with it. Sounds like you have had a very busy weekend too. That's one chemotherapy session over with ,I used to keep telling myself that with each onei had that im getting closer to the finish line didthe same witj the 15 seesions of radiotherapy, and it made me feel.good and ootimustic ,you've got this ,maybe a few ups and downs along your journey  but thats to be expected i guess when going  through any kind of treatments for cancer . But you will get there and with each treatment you have be proud of yourself . Keep up the positivity .

My apologies if I’m missing anyone else’s journey in this thread but James, yours really struck me. You just seem to have had the rug pulled out from under you completely but you got up, dusted yourself off and asked “what’s next?”. You’re handling it all remarkably well. I’m sure you have the odd wobble here and there but as a complete stranger who hasn’t walked in your shoes yet,  you are properly inspirational

i came here the other day to post my very  positive tale of both my colonoscopy and upper GI endoscopy in the last weeks  (both were absolutely fine experiences and wish I hadn’t read so many horror stories) but as I’m being flung through the NHS at terrifyingly lightening speed for tests I’m glad to know if I get bad new next week not everyone falls apart like I expect I would. 

The very best to you - and any others I may have missed - you’ll kick it’s *** so hard. 

Hi James4000...just wanted you to know I am thinking of you,  stay strong and be kind to yourself xx

Good morning 

Sorry I've been quiet on here. Sometimes that's because I've been trying to get on with things normally; other times I'm struggling. Normal, I guess.

 FishCalledFluffy thanks for your kind words. I hope your journey moves in the right direction, despite the bumps in the road.

 Eastendgirl tangoPotter thanks for all your ongoing support and kindness.

So, my update. I was supposed to have round 2 of chemo last week, got deferred to today, and this morning deferred again. Basically, they take 4 blood readings and 1 of mine (neutrophils) is way too low to have more chemo until it recovers. I'm feeling fine physically (bit of a sore throat, slight headache) but mentally I'm very down. Want to get on with the chemo and shrink the tumour, but have to wait again. And I'm worried about my general health with the very low neutrophils- I was told it can happen but I am concerned the levels are not recovering still. Anyone know more about this?

On the plus side, my bowel movements are much better. Less frequent, easier, etc. I'm telling myself that the 1st round of chemo already shrunk the tumour a bit, which is helping that. Don't know how likely that is, but everything is connected, mind and body, so trying to be positive.

Just hard to feel positive today, after another delay in getting well and my blood showing my immune system has been so smashed, even though I feel ok physically.

I hope you're all doing alright. Let us know how you're getting on

X