Any help appreciated

Hi bleue

Sounds like you're an incredibly compassionate and supportive person.

I'd suggest you (with you friend present) call his oncology nurse/CSN and share your/his concerns. They may organise an additional consultant appointment to answer anything they don't know themselves.

Asking for 2nd opinion is also an option and apparently is very common. Again his consultant or CSN should be able to offer you 2nd opinion consultant options, including with alternative hospitals or trusts. I believe they should see him with 2 weeks of referral, to align with NHS 2wk fast track protocol.

Hi and thank you for your response. Sadly, the nurse was initially nice to me, offering tissues in consultation room when told 3-6 mnths etc, but when outside the consultation room spoke to us in the waiting room with all the other patients present, i asked are we not going to a private room and she abrasively said 'no' here is fine... no dignity, no confidentiality, no respect and zero care - hence why I want to move hospitals. when he had his colonoscopy and I needed to verify info on the pre medication I called week before, zero response to mssgs, and then over 18 times in one day and no one on the number given answered... extremely poor, had to go through PALS to get a call back from them... so you can see I have little confidence in them.

I will speak to Macmillan Tuesday out of another hospital and get advise, I don't want to be the person who delays his treatment, but I do want him to get the right treatment and in a hospital that is more respectful to both him and me. I am his eyes and ears - 

It took 3 weeks until he had oncology, there was no sense of urgency re the colonoscopy but a 2 week wait - or maybe that is standard? In that time he continues to lose a lot of weight - and no contact from palliative care which his GP requested over 2 wks ago...!

Was all this information given to you during your visit to A & E with your friend? Presumably after either a CT Scan or a Colonoscopy during that time. If so, it would have been an A & E Doctor who delivered the diagnosis - who would probably not have been able to give much more information. However, the facts would be sent on to an appropriate surgeon & oncology team - who would then have a general meeting to ascertain the appropriate treatment that your friend will have - & will give further information re. the site of the tumour, & the extent of it into other organs.

& yes, if it's Stage 4 & Palliative - people do go on to live many more years. I currently have a friend in that situation, who was also told 3 mths without treatment (last Sept.) Well, she's still here, looking well, & has undergone a lot of Chemo. She's having a break from it now, but will resume again in April.

Best wishes

Marianne x

Hi bleue

It does sound like you have both had a lot to deal with. How does your friend feel about it? Would he prefer to go elsewhere?

Sometimes delays do happen due to mistakes, staff or equipment issues, silos, etc so i'd encourage you to not shy away from chasing up. You can always email questions in if they are not responding to answerphone messages. I also found asking for any cancellation slots helped reduce the delays.

Msybe you/he can ask for a 2nd opinion in parallel to his current hospital continuing with their treatment planning.

The start of the journey can be frustrating, daunting and slow - but once treatment plan is agreed, things go fast.

Hi Marianne,

No the information or lack of it was given at his oncology last Friday. 

We were first told he had bowel, liver cancer diagnosis after CT scan and xray 16 Feb at A&E. The next day we had to return to ambulatory for another CT scan for lungs - which we were told there were spots, waited hours for that.

He had the colonoscopy over a week later not at A&E.

The MDT met, hence the oncology last Friday.  Although when appt was made for his oncology appointment he hadn't had colonoscopy, so the information on CT scans and x-rays were enough.

We were told scant facts i.e size of tumour, location, extent of cancer sites in colon, also no information about the facts re cancer location and extent in liver and lungs.

Positive to hear about your friend, but I really need help as sadly after his diagnosis on 16/2 I was diagnosed five days later with breast cancer - you really couldn't script this...! 

Many thanks Marianne.

bleuex

Hi CrumpetsOrtoast,

Thanks for that, so much going through my head. 

Sadly five days after he was diagnosed I was diagnosed with breast cancer - a lot to deal with, plus I have MS which really debilitates me - so not having a good time of it.

I just don't want to be the reason his treatment is delayed, are you able to start treatment then move to another hospital or you have to stay at the hospital you've started with?

I'll probably email the Macmillan nurse team as well.

But thank you so much for responding, feeling so alone with all this, and it is huge in an area you know nothing of until it's knocking on your door - so to speak.

bleue

Hi bleue.

You definitely have your plate full. Please pace yourself as your wellbeing is critical to your own recovery.

People start, stop and change chemo if things aren't going well or new things come up, so if a new oncologist believes a different treatment plan would be better, then think your friend would just stop original plan and move to new. 

Please don't feel alone. We are here for you and the Macmillan helpline + Ask a Nurse function are also on hand to help you too.

Does your friend have anyone else that could help share the load with you at this difficult time?

You can also contact his consultants' secretary if you want 2nd opinion contact details.

https://bowelcancerorguk.s3.amazonaws.com/Publications/TreatingAdvancedBowelCancer_BowelCancerUK.pdf

Hi bleue 

You might find this a positive read . It takes a while to get the information together particularly in a stage 4 setting but essentially if it has spread to more than one organ they would normally consider a systemic approach to treatment and for good reason . They want to stabilise the disease and reign in any spread . And hopefully gain shrinkage . This can open up other options in the future . Bowel cancer is quite fortunate in that regard .

Going straight to chemotherapy can be a very good approach and I certainly would not stand in the way of that . Additionally the nearer to home after the infusion the better so that needs to be factored in . Whilst the incident with the nurse was unsatisfactory the actual clinic will be with different staff and my mum sees different people each time .  She finds it best to take it process but process . She has been 14 years this summer as a stage 4 patient and been through many aspects of this .

Chemo did a powerful job for her . It turned things around . Sometimes it’s easier to see it as a starting point . It got my mum to surgery twice in a round about way.

You have your own health challenges and right now some things might need to be set aside as it just gets so overwhelming.

Do you know your friends cell type ?

Court 

Hi Court,

Thank you for your information, it is positive to hear about your mother.

It is just this hospital doesn't have a good reputation within surrounding areas, I left two messages yesterday and another last week for the specialist nurses and received no call backs...! When I compare with my hospital, the SCN has got back to me. I know they are busy with clinic, but why give a phone number if you are not going to return calls...?

It just feels like scant information has been given, so we are aware of what is happening - again, I compare with my treatment at my hospital.

Thank you for flagging up the distance, I was thinking exactly that consideration the other day, if we move - that it will be further away. But I just want him in the best hospital, with staff who are kind and respectful, to both him and me. Sadly, being an advocate can mean people treat you as the enemy, but I am his eyes and ears as he doesn't have good English (that's a whole other story of fighting with Education providers to make reasonable adjustments for his learning re his visual disability - finally won, he started 4 weeks before his diagnosis, so three years fighting, advocating ... completely wasted time, he could have been so much further on with his English...)

Thank you again Court, we are attending today for the PICC line insertion, due to his visual disability, just worried about care and maintenance - sadly the palliative care never got in contact over 2-3 weeks, I had to call them Monday - and they claimed, miraculously, 'oh we've just received it' whilst I was on the phone pleading with them that it was sent nearly 3 wks prior from the GP...?

It's just continual fighting, which he cannot do, which is so unnecessary if the system just worked, especially in this sort of situation when we need all the support we can get.

bleue

Sadly, no one else who is English speaking that what do the advocacy I do. We have become like family, many people ask why I do for someone I don't know, but after 13 years we do know each other now. 

I hear you re pacing - trying to snatch days or half a day where I can.  

That's the issue with this hospital, no idea who the secretary is...? As I said scant information given.

Sadly, on days when i can snatch time for myself I need to rest, due to MS, so I can't utilise that time re exploring changing or 2nd opinion. I lose time, but the rest is important, which I have struggled with since all this has happened.

I will call the nurse function.

*I did visit the Macmillan centre in big hospital, initially the woman and ex nurse was engaging and told me to return Tuesday, which I did with him. She seemed reluctant to spend enough time with us and I felt rushed like I was an inconvenient nuisance and shouldn't be there. she did say on the Friday when i dropped in, that because he wasn't being treated at that hospital (my hospital) she shouldn't really advise, but she would help me - although, I was told to use that resource by his hospital macmillan small pop up in the foyer as the woman was going on holiday for 2 weeks...

We travelled all that way for not a great reception... :((

All I'm asking for his help and kindness - as negativity impacts badly on my energy levels and soul.

thanks again, being able to just write this makes me fee less alone,

bleue