Fathers bowel cancer

I would also add for clarity, his first cancer was a 7 inch tumour at the end of the rectum which after radiotherapy, chemotherapy tablets and surgery resulting in what should have been a temporary stoma, was cured. It seems to have recurred much more seriously after less than 2 years later. He keeps being told cancer like this wouldnt recur this seriously so soon so its obviously metatastic but it was all gone. The only problems he had with his kidneys before he had the nephrostomy bags was back pain and swelling in the legs. The only reason this was found and didnt kill him was because my mum made him see a doctor ending up with a month in hospital. He has had / has recurrent problems behind his stoma. They are saying its a 'collection' which when they tried to drain discovered it was basically solid. They believe it basically more infection. He was being assessed by a specialist hospital in order to give him sugery to remove the cancers but they cant because of how ill he is and i believe they think he wouldnt survive the surgery. Someone has to do something. Im at the end of my tether as it is just slowly killing him

Dear Staringskywards 

Thanks for getting in touch during what sounds like an uncertain and stressful time. I’m Linda, one of the nurses from our support line. Please accept our apologies, it has taken a little longer to reply to you than we strive for.

It does really feel like a catch 22 situation for your father just now, it can be a fine balance to try and get treatment started when there are other complexities going on.

You mention you are beside yourself with fear and anger over the lack of explanation and care. This is common when we don’t feel fully informed. If we don’t have all of the facts that we need to help us understand what’s going on it can leave us feeling vulnerable and this where these emotions come from.

I’m not sure if you or your father have been able to take this up with the hospital team. If not, then this would be the best place to start.

With your father’s permission, it is worth contacting his oncology team to ask to speak with the consultant or someone senior in the team. Don’t worry about asking for this, many people do, and it should help to gain clarity over his care. It is best to do this along with your father as he may also have questions that he wants to ask.

If you have difficulty arranging this you can contact the patient affairs team who work in the hospital that your father attends. This may be a PALS service if you live in England. Other Countries will have a similar service, and you can find out their contact details on the hospital or trust’s website.

PALS first step is often to try and resolve issues such as poor communication or lack of explanation as early as possible. If after this the situation hasn’t improved then a complaint can be lodged. Healthwatch have guidance about this.

Though we are not able to offer specific treatment advice, as we work independently of the NHS, you are welcome to call us. We can ask a little more about your father’s situation to see if we can make any other suggestions, and we are here to support you too.

 If you father or mum would like to speak with us we’d be happy to hear from him too.

Best wishes and take care

Linda (Cancer Information Nurse Specialist) 

You can speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

Ref: LM/HM