Well done David, hope I can post a success story one day too, I’m not giving in, trying to make the most of everyday, I only  recently moved to Cornwall, I have a lot to see.

Hi Denise, 

The doctors have started listening as I’ve been a pest today , managed to get them a 2nd time as they past my room, threw a few more questions at them, I’ve phoned oncologist, his assistant & named nurse & left them all messages saying which Ward I’m on & I need to speak to them urgently.

Also been on to the kitchen staff, was finally allowed a tuna salad & they even found lactose free mayo for me.

So I’m hoping to get a few things sorted out tomorrow x

Hi River I am glad you did manage to eat something.And I hope you will get sorted your treatment tomorrow.

Take care and dont forget be firm and be a pest.

Denise

Just had the worst news, seems I’m literally weeks away from dying. The cancer is throughout my stomach & bowel, the surgeon doesn’t want to operate as that would delay me starting treatment & he said I need to begin it as soon as & hope the treatment shrinks the cancer before it makes it impossible for me to manage. 

He said to stick rigidly to a liquid diet, the fortified drinks are to be a supplement not a replacement. If the hospital can’t provide a liquid diet for my lactose intolerance he’s happy to discharge me so I can follow the diet at home, I must try not to lose more weight.

This all seems so incredible when only weeks ago I was feeling fine, yes I had stomach problems but I’ve learnt to cope with them as I’d constantly been told it was because I wasn’t sticking to lactose free, my gastric consultant even refused me surgery in January because my problem wasn’t severe, just mild he said. 

Now dont know what what to do, the family will be wrecked if I give them the honest truth and for now I need them to be strong. It’ll be at least 2 weeks to begin treatment, question can I make 2 weeks and will treatment be able to have a helpful affect instantly?

Hi River3 I am sorry to hear your news.I am sure you are not weeks away from dying they wouldnt offer a treatment.The treatment might shrink the tumor and after shrinkage they might operate.

I know its hard but I think you need to be honest with your family and tell them whats going on they can offer supoort and help.

I am here for chat anytime

I do hope you’re right Denise but the consultant said if I needed surgery he’d have to go ahead as the pain would be too much to manage but surgery wouldn’t prolong my life. I’m extremely close to needing surgery which would ruin all chance of going on the clinical trial, which is my only hope. I knew my stomach was bad but hadn’t realised it is at the advanced stage.

I’ve just been told someone from the Trials Team is coming to see me shortly so perhaps I’ll get a different viewpoint 

Oh you are really in awful situation.They didnt offer a standard chemo?But its good you get another opinion.Let me know what they said.

Take care 

Denise

My oncologist has been to see me and has warned me that it’s possible the trial won’t be suitable for me anymore. It’s not definite but apparently a side effect from one of the trial drugs can have a negative effect on the bowel & my current symptoms are suggesting that my bowel is now cancerous whereas it wasn’t on the previous scan.

He did however say if the bowel doesn’t look to be a problem then if he can bring the start date forward he’s happy for me to go on it & he’ll do his best to alter the date. But if he can’t he agrees I can’t afford to wait & should start chemo straight away.

They are hoping the scan will be anytime today or tomorrow but he’s keeping me in hospital until then. If for any reason the scan is later than this he’s moving me to a private hospital where his oncology ward is currently based, he said they would be better monitoring my fluid levels & providing a liquid diet.

Hello.I am glad dont give up hope for the trial but even so at least you can have a chemo.I know hoapital is not a great place to be especial this time but at least they can monitor you.I hope they can manage also your pain.

Denise

I am so sorry to read this. My best friend is in a similar situation. She has been diagnosed with bowel cancer that has spread to her vagina, groin lymph, liver and lungs. She is 45 and all they offered was one dose of palliative radiotherapy. She has now been offered 10 doses but doesn't start until 2 weeks time and with anal lumps appearing daily I am concerned the delay is too long. She can't cope with knowing how long she has but as I am 100 miles away I want to see her as much as possible if she hasn't got long. It's a horrible situation to be in.