Eastendgirl thank you  xxx

You're welcome xx

That balance is vital in my view, it's all too easy to research information,  which can be helpful but other times, negative, distressing and very often not relevant for us..

I find recognised support groups the best option. Offering medical research and info along with personal experience from others.

Your body and mind need rest which I hope you are able to achieve,  if only for a while x

Eastendgirl how are you love hope your doing ok. And hope your friend is ok too. Feeling a little low today  some times in the early morning when I wake you every think floods your mind of what you have and what’s next  some days it doesn’t bother me too much than other days it can be on my mind and feeling trapped with it   Sorry for the rant but your brill to talk too xxx

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

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

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