New diagnosis - advice

Hi 

I am really sorry to hear about your relative , particularly the pain level they are currently experiencing. It sounds as though the pain management needs to be attended to . You might like to phone our helpline staff 0808 808 0000 or their GP to get some assistance on how best to go about reviewing that . Certainly the oncologist will assist and take that forward but I would imagine it needs a professional involved now . 

The oncology team is very good . Once they have all the cell type information they will decide the correct treatment pathway for him . I will link in a good leaflet that might explain some of the processes and options available and give you a rough indication of what to expect . Treatment response is very individual. There is a subgroup of patients that do well despite a significant spread and difficult diagnosis. Some use maintenance chemotherapy over a long period of time and keep the disease stable and others don’t get such a good response. 
Although there is a list of side effects not everyone gets all of them and they are good at trying to manage them . You get into a routine of managing them .

If they require assistance at home you can get a care plan assessed . Their GP could advise who to contact or our helpline staff . 
Bowel cancer chemotherapy has some particularly side effects and the leaflet I will add will guide you through some of the more common ones .

Please feel free to ask anything . We are all here to support where we can ,

take care ,

Court 

https://www.bowelcanceruk.org.uk/about-bowel-cancer/our-publications/treating-advanced-bowel-cancer/

This is a new publication from Bowel cancer Uk and is quite a good read . It covers most aspects of diagnosis and possible treatments .

Take care ,

Court 

Hi this is always awful waiting to find out what the treatment plan is. I will say that there are many who find that they can live a reasonable quality of life on treatment for several years, often past any sell by dates so do not give up hope entirely. People vary so much so keep an open mind. I am considered incurable but I have been given a couple of years and I intend to get the most of them.

I agree with court, you need to get on top of the pain asap. Try the GP or get them to refer you to your local hospice if you have one. Hospices are wonderful and you don't have to be dying imminently to use one. My local one has counselling for the sufferer and family members, they have living well clubs and have specialist community nurses who ring and support you and help you get any help such as wheelchairs, bathing aids etc. They also have Drs who specialise in pain control who will help you and advice lines on anything including finances, wills etc. It helps you cope when there is someone to talk to. I can't recommend mine enough.

It may sound daft but as time passes it gets easier in some ways, you kind of get used to a new normal and set your goals to the next test/treatment/scan, but there are plenty of tears on the way. Just be there if they want to talk. Let them know of help that is available, listen to their fears and don't smother them with false positivity, realistic positivity is best (prepare for the worst, hope for the best). Finally fight their corner when you need to, search out the info so it is to hand, chase when things don't happen as promised, read around the subject so you know what is happening, offer your relative choices but also respect their choices. If they don't want something, as long as they are well informed and realise the consequences of their choice, then respect that as well.

Sorry for the rather long message. They are lucky to have you on their side as you are clearly proactive and loving.

Nicky

Thank you both for the replies. They have really helped.

hopefully the biopsy results won’t take long then at least will we know if chemo is likely to start before or after Christmas.

it’s good to know what to expect and where to go for more support so I really appreciate you both taking time to reply to me.

Thanks