Eastendgirl thank you  xxx

You're welcome xx

My dear tangoPotter please don't ever apologise,  I'm here and thankful you feel able to chat to me

I think your emotions are very usual and experienced by many people in situations where our lives are altered and affected. I completely understand how you are feeling. 

Our brain is so complex and has such powerful control over our bodies and emotions..

Strange how some days we cope better than others, which again shows the power of our brain..

To be able to share, be listened to, is vital for us all,  please don't ever apologise for contacting me, I feel very blessed,  take care and remember,  I'm here xx

Eastendgirl thank you for your reply. I’ve just had a phone call from the hospital to make appointment to see the consultant about my scan and things for next Tuesday to discuss things I’m really scared and nervous about all this  x

I can only imagine how nervous you are feeling, I always try to find the positive in these situations..

First of all,  seeing the consultant,  hearing his opinion and plan for you and your treatment is a move in the right direction.. the waiting and worrying is so overwhelming and exhausting..

Do you have anyone to go with you to the appointment,  really hope so  

Sending love and hugs  xx

Eastendgi I’ve just had another phone call from a nurse asking me if I want to go on the trials  she said I can go have a chat with them after speaking to my consultant next Tuesday   She said the good news is my cancer is just in my bowel it’s not spread any where else she said you will need a operation  I knew that any way  she said they used to just take you in and whip it out  but I don’t know what she is on about these trials. Like for chemo  x

Eastendgirl forgot to mention they also said the biopsies was incomplete  so I asked how can that happen.and nurse said maybe they didn’t cut higher enough up 

Okay, take a breath and slow down....

First things first.. being told there has been no spread from the bowel is great news and hopefully you will be able to relax a little now.

As for taking part in any trial, this obviously needs a lot more information and the advice of your Consultant... I'm not sure there is anything else you can do for now.. except be kind to yourself and deal with it on Tuesday  at your consultation..

The other option is to contact the Nurse and ask for more information about the trial.. but without first seeing the consultant I  don't feel this would be helpful for you. 

Hope this makes sense to you  x

The Nurse gave you this information?

Did she say incomplete or inconclusive  ?

Find that unusual as it would normally be a Consultant who gave this news to a patient.. unless of course this is something he had planned to discuss with you on Tuesday..

I know it's very difficult but please try not to overthink these calls.. I would be inclined to contact the medical secretary to the Consultant.. explain about the calls and ask if you could speak with him or have an earlier appointment..I doubt you could be seen earlier but perhaps he is able to explain the situation a little better..

Medical secretaries often work reduced hours 10-3 on a part-time basis..3 days a week... but it's worth trying in my opinion..

Nothing to lose and hopefully it will give you a better idea of what's going on at the moment..

Sorry you are having such a rotten day 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

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 

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