Retroperitoneal sarcoma

Thank you, I hadn’t realised there were Sarcoma nurses at the OUH.  I’m hoping to get local support as soon as possible.  However, I’ll enquire about the specialist nurses there, I’ve really only had the diagnosis recently. It’s a bombshell, and hopefully the mri on my spine will be ok.  As you say, the surgeon and ward were very good, but they are very sadly lacking in any aftercare. I know there’s a Maggies there, right by the entrance, but again, I’m a 3hr round trip away. Ordinarily that’s not a problem, but chronic diarrhoea prevents me travelling.  Anyway, thank you for your reply, and I’m relieved to know I wasn’t the only one wondering about post operation care etc from Oxford. As good as they are, maybe they don’t know how important advise etc is to us. 

I have today had contact with the sarcoma nurse at the OUH.  Not sure if they’re Nuffield or Churchill, but nice to at last have a telephone number. 

Hi Lyn21

sorry I haven’t been on the site for awhile. It a shame that your bowl is giving you such a problem. Mine was pretty bad but yours sounds worse! I feel for you. I didn’t get much advice from the Marsden I really had to figure it out myself. Although the consultant is very sympathetic and acknowledges it as a post op problem particularly if part or all of the duodenum is removed. Because it can lead to bile salt intolerance which is what I have. 8 yrs on it’s much better unless I overdo eating certain foods. I’m not sure I will ever be able to eat ‘5 a day’ again! Fruit fibre and spice I have to go very easy on. Another thing is to go on App Store and look at the various apps that show you where toilets are. It’s quite reassuring if you venture out to know where the nearest is. I have hardened up over the years and now will charge to the front of the queue if necessary and explain I’m not infectious just post cancer treatment! Have to say everybody has always been very sympathetic. I so hope you get sorted out and can resume a normal life soon. 

Janetyjane

That’s good, I usually have to leave a message, but they are usually very good at replying the same day.  I had surgery at the Churchill, but sarcoma team are based at the Nuffield.  Hope you managed your scan journey OK.

Susee