Eastendgirl thank you  xxx

You're welcome xx

Eastendgirl. Thank you so much for your reply  your right as always I need to slow it down but just felt all these calls one after another a bit too much. My head is banging. At least I know this is confined to my bowel which is well good news it’s not any where else and is treatable  but these biopsies  inconclusive I couldn’t understand that because 8 was taken  this nurse that phoned me was a specialist nurse  and she said maybe they didn’t take enough off or high enough   Thank you my friend  xxxx

I'm not surprised you are feeling overwhelmed today the consultant is the person who is able to give you the precise information about the biopsies and explain it clearly to you.  With due respect I feel that unless  a Specialist Nurse has been authorised by the Consultant in charge of your case, information can be very misleading and confusing to the patient.. from experience..

Try to relax and breathe.. be kind to yourself and hopefully the week will pass quickly for you xx

Evening both

Tango, that is great news that they've confirmed no spread beyond the bowel.

When I got the news there was no spread visible anywhere in other organs, I was made up. It made my day. I'm so glad to hear you have had similarly good news. Best news I've heard in a few days. I'm really happy for you!

Of course, there's a way to go, and the waiting is hard. But one would think you will soon have a treatment plan proposed and everyone keeps telling me that's a big helpful step psychologically.

Like Eastend said, the consultant will be best placed to advise further. The nurse may be able to advise to an extent depending on a few factors. I've have an excellent, well informed cancer nurse. Either way, I'm sure you'll know more at your appointment soon. 

Take care. Really chuffed to hear the good news of no spread.

X

So good to hear from you James4000  sending

James4000 thank you James  I was so thankful to hear that it as not spread to other areas I must admit I was a bit scared it had spread  the Thursday scan showed it hadn’t. Thing I don’t understand is how can 8 biopsies be incomplete I said that to the nurse she said maybe they didn’t cut deep enough or high enough but thankfully the scan was enough for them  so the nurse said I will need a op well I knew that anyway  so she mentioned  the trials for chemo I would be eligible that it was my decision   I’m just hoping I can go straight to surgery get rid of this thing  will have to see  have they mentioned these trials to you six weeks of chemo   Hope things are going ok for you James  xxxx 

Eastendgirl hi love  got a call from a specialist nurse to tell me about these trials again she said I was eligible because I appear healthy with never going to see my go as if I’m never really ill apart from this. It seems to me what ever you  need chemo before surgery and then maybe again after wards  I don’t want to do the trials  she said I don’t have to agree with having the trials  then my consultant would talk about options I may have that are standard   Wish they would leave me alone  but it does seem like you have to have six weeks of chemo then surgery then chemo again to make sure the cancer don’t come back x

Hi tango...it is the usual procedure to be given chemo prior to surgery, sometimes with oral chemo added. The idea is to reduce the size of the tumour before surgery. A further course of chemo,  sometimes radiotherapy is given postoperatively  at the discretion of the MDT caring for the patient. 

The choice of taking part in any trial is entirely up to you... as you will be aware, trials are carried out in all branches of medicine,  to enable research and scientific study and advancement for future generations...

You don't need to make a decision if you would rather wait and discuss it with the consultant on Tuesday.. trials are voluntary .

I'm sure you're feeling overwhelmed right now, unfortunately it's part of being on the 'journey'  experienced by most people in your situation

Eastendgi. Thank you for your reply  I am feeling overwhelmed too much information  all at once  I do know they want to start my treatment as soon as possible  so I’m leaving it untill next week until I see consultant  I’m having rest of this week off from thinking about everything  hope you are ok  xxx

Tango...best idea...concentrate on being kind to yourself,  listening to music   you love, watching a movie   reading   maybe having a coffee and chat with a friend if you feel able.. thinking of you and sending love xx

James4000 hi how are you doing hope things are going ok  I have been trying to eat a little more but I’m feeling lots of wind  just hope I don’t have a blockage I’ve been feeling a bit sick as well lots more wind than usual I was in and out of bed most of last night with wind and thinking I need toilet  but it was just wind and mucus  do you get these feelings  xx

James4000 hi how are you doing hope things are going ok  I have been trying to eat a little more but I’m feeling lots of wind  just hope I don’t have a blockage I’ve been feeling a bit sick as well lots more wind than usual I was in and out of bed most of last night with wind and thinking I need toilet  but it was just wind and mucus  do you get these feelings  xx

Hi Tango 

Yes I definitely experience some of that, but it's OK. I've got used to having more wind and more bms. They've settled down a bit and I think my mind-gut is learning that I don't actually need a bm all the time.

I'm not doing too great today. Picked the worst day to forget my meds before going to work. I know the MDT is meeting about me again today and a nurse should call me later. My anxiety is increasing. I know it means a plan is about to be proposed and treatment soon, and that's one step closer to treatment and cure, but I'm really scared about what it'll entail and what kind of final outcome they think ill have.

I am very fortunate in having an option for a 2nd opinion. But it all involves time, phone calls, paperwork etc that can be mentally and emotionally draining - the sort of things I completely take in my stride in other aspects of life are daunting for me in this case.

Really hoping for encouraging news from MDT today and an appointment with a consultant soon. Wish me luck

X

Thinking of you James4000 and tangoPotter ... hope you get a call re the MDT meeting  with an appointment to see the Consultant soon... it's very difficult not to 'think ahead' but it causes so much stress and the treatment/plan/ outcome is unknown at this stage... further stress impacts our mental and physical health... 

Be kind to yourself

James4000 hi James I do know what you mean about feeling anxiety about every thing  I’m in the same boat so to speak I have an appointment on Tuesday morning with a consultant and I’m really getting nervous about the meeting  I guess he will tell me things about my tumour  I do know they want to start with chemo to shrink it before they operate  I’m worried about chemo and the down side effects it’s bad enough coping with the tumour as well as side affects from chemo  but I know I need to get better so I will have to have what ever they say I have to have. I was hoping I could just go and have a operation to get rid of it even though I’m scared about that  but I was told they don’t like doing that   Wishing you all the best James my thoughts are with you  keep us informed  lots of love xxx

Thank you both

I have, to an extent, a different situation. I am worried, from.what I've heard so far, that in my case, if they go straight to surgery, I'd have a higher chance of needing to have a stoma (due to location and size of the tumour etc), so I wonder if some oncology first to shrink it would be better for my longer term recovery and healing.

I'm in the dangerous realm of speculating though.

Hi James4000... your last sentence says it all...

A high % of cancers are initially treated with chemotherapy,  this is to hopefully reduce the size, therefore enabling a better removal of the tumour..

Every body, every cancer is unique and therefore I  think we have to trust the medical profession to use their knowledge and experience to achieve the best possible outcome for the patient...

Listening to the experience of other's is neither helpful or informative for any of us..

Yes makes sense.

Just had a call from the nurse. It's going to be chemo. I'm not so bothered about that per se. But am very worried that the location of things is making it look trickier for surgery and they seem to be looking at a stoma outcome. Really really want to get through this without a stoma if there's any chance.

Feeling very down. There's still a chance, I guess, but I am guessing. I definitely need detailed discussions with both surgeon and oncologist. I should be called in for a meeting in the next fortnight. And I'll need to collate a load of records and send them off for 2nd opinion.

I am grateful there should be treatment and cure, but am feeling very low about next steps and the prospect of a stoma.

Hi James4000 I'm sending you a gentle hope that's OK...

I would like to share a couple of things that may or may not be useful but I'm hoping they are..

In regards to a [ possible] stoma...this can only be decided by the surgeon,  very often at the time of surgery,  some things are difficult to predict beforehand.  I gave a friend/neighbour who has been thru this process, beginning a decade ago..

Chemo, surgery and a stoma.. not the outcome as a fit/healthy/ active man.. he had envisioned.. but his willpower and strength to not be determined by the stoma were incredible  ..

He cycles daily, swims, plays bowls, takes regular holidays,  keen gardener... everything he did prior to surgery.. his adaptation and acceptance of his new way of life has been inspiring and humbling to all who know him..

In respect to obtaining a 2nd opinion...

Sadly a young cousin was diagnosed with breast cancer last autumn.. she underwent the chemo in preparation for her surgery and further treatment post op.. 

She was given a date for her surgery and then decided to have a 2nd opinion..

Unfortunately the 2nd consultant confirmed the diagnosis and treatment plan set out by the original investigations, which were very complex and thorough.  The outcome of this is that she has missed the original date for surgery and is now back on the list.. she is told she will be fast-tracked without any definitive time for her surgery...

Thinking of you x 

Thank you Eastendgirl 

I appreciate this so much.

Mentally I'm not ready to consider a stoma possibility, but at some point i may have to. I'm a pretty tough cookie generally but (and to your wise point about being kind to oneself), my mental and emotional reserves get drained and right now I'm at a very low ebb. Not sure what else I was expecting really but I guess I hoped for some better news.

Will try to get home and take my meds and then try to get out and do some exercise in this torrential rain, which may help a bit.

Sorry to be a downer at the end of the week. I'll read your post again when feeling stronger, as the example of your neighbour is inspiring. If it comes to that for me, I like to think I could follow.thay example and be determined to bith beat this and not let the possible.l stoma hold me back. I just don't have it in me today right now to feel it.

Thank you so much for your support.

X

You are not being a downer, you are feeling overwhelmed by the diagnosis and situation,  which is normal and to be expected..

Get home,  take your meds and enjoy your exercise.. think that is a contradiction  minus 3° here in Scotland sun going down...##bekindtoyourself  x

James4000 hi James I’m sorry your feeling so down with what you have been told  hope when your feeling a bit better and on reflection things won’t look too bad  everything we are told takes some sinking in   My thoughts are with you  James  we are here if you need to talk x