Unsure of what to say.

Hi 

Think that Is a fair analysis in the current climate and who could blame him for feeling overwhelmed and discouraged. Hard to feel as though they are on your team getting that news in a letter ! 

So if I am reading this correctly he is responding in his lungs but the liver may have mutated and not responding .

Do you know if he is MSI or MSS ? Think it would worthwhile asking if Immunotherapy would be a possible. I personally like to get a second opinion. Let’s you see how another clinician would manage it . Particularly when you have all the tumour testing to hand . Bowel cancer uk has a stage 4 Facebook group with some pretty informed people on current treatments . 

From your husbands perspective he sounds as though he is not open to that just yet and taking the time to process it may be helpful . I remember being quite surprised at how laidback they were about my mum’s liver . I felt there was a lot of urgency but they were much more inclined to encourage her on holiday . Then come in for treatment . I decided they had a bit of a grasp of where the line was .

One aspect that seems reasonable to want more answers round is the treatment plan for the mutations . That seems unanswered and causing anxiety as you feel it’s unaddressed. If you know their thought process then you might have more confidence in it . That’s where a second opinion can be helpful as they might have a better communication style and give a bit more direction .

I think it’s the lack of clarity that is causing you both concern but worked out in different ways .

Possibly completely wrong but just my thoughts .

Remember our helpline staff might be able to talk you through options as well 0808 808 0000 . They have a lot of experience in this area .

Take care and any time you need to chat it through you know where we are .

Court 

Hi how cr@p for you both,have you looked at the incurable group? I hang out there and there are some very wise souls who have gone through this themselves. I think that a second opinion is a great idea and I agree with you if nothing else it will bring peace of mind, whatever the future holds. You can't however force him even though you might want to. I have a number of thoughts as I am considered treatable but incurable like your husband and have had a similar timespan given to me so I will just get them out there and you can pick and choose what you want to pursue. I do hope that I won't offend you by being a bit blunt.

Time does heal a bit, you panic at first then you get a new normal. 

You need to be able to talk about your fears with each other. Keeping a stiff upper lip for each other is hard, just pretending won't make it go away and you need to make the most of every moment together. If he won't talk then try raising your own fears gently with him and see if he opens up as well.

I have been referred to my local hospice and they are fab, I get regular phone calls, the chance to chat, when COVID ends they have counselling, financial advice and living well workshops for me and my family. I don't expect to need them for a bit but I know they will be there for me. They also knew who to ask for things like wheelchairs etc, something for the future perhaps?

There is death admin to do and it is a relief to sort it, my will is done, my power of attorney for finances and health are done. I have drawn my pensions early and some people have mortgage insurance they can claim. You can get disability payments and blue badges Once you have done it you can forget it and get on with living.

If he won't get counselling then consider it for yourself so you can cope better, look after yourself as well and keep up some fun stuff. Otherwise the awful things can be all consuming.

I cried a lot at first, then I had better days, then the good days outweighed the bad. There is pleasure in the good times, we go to the coast and eat fish and chips. We go to garden centres and have tea and cake (when they are open). We sit on park benches and hold hands. I sit in the garden and listen to birds. I am practicing living in the moment, difficult but the good times are very precious.

Go for a 2nd opinion. consider trials and chemo but also live every moment you can, we don't get a choice in this. A wise friend said to me that she spent a lot of time dying with cancer and then realised that she could also 'live' with cancer. 

I really hope that this helps

Hi Court, thanks so much for your reply. I’ve been looking through our notes/communications to see what info I can find.

Yes, it’s seems the treatment is helping in his lungs, his oncologist, was somewhat unclear when we saw him face to face, he mentioned he was unsure what was happening in liver but mentioned mutations, hence when I emailed him, I asked what the normal treatment was for someone with normal and mutated, I haven’t had an answer to that just a copy of the CT report and asked to make a list of further questions to ask.

 I can’t find anything that mentions MSI or MSS, so I’ve no idea, after they received the biopsy results, we were told there were no mutations, to be honest we were just relieved he could have Cetuximab to help, I had asked previously if it was possible for him to have Avastin, but we didn’t hear any more about that. I know it’s expensive but cashing in an ISA would have bought us some time.

Your absolutely right, it’s the lack of information about a future plan. I remember him saying this month, if this treatment doesn’t work all we have left is the Folfox, we told him he started a treatment of that January 2019 and he only had 3 cycles as it affected his eyesight, in August he said there were many combinations to try. There has been no mention of immunotherapy. 

I’m not sure how to get a referral or second opinion but feel like the clock is against us, waiting until early January for a scan to be told the treatment hasn’t worked seems such a waste of precious time, when there could be something else that might help.

 I have already looked on the Bowel Cancer Uk Facebook page and can see it’s a very active site, I’ll definitely be search/monitoring anything which might help.

Thanks again, I really appreciate all/any advice......budge

Hi Nicky, I don’t consider you blunt, your direct and honest, although I live in Devon, I’m from Yorkshire, we also have a tendency to be blunt, honest and direct, all qualities I admire.

Yes, I do hang out in the incurable group, I’ve found them so kind and understanding, they’ve got me through some low points.
My husband and I spoke today, and he wants that second opinion or a referral,so I’ve been given the green light, not sure how to go about it yet, but I’ll work it out.

I know he won’t go to counselling but I will, I did mention it to Doctor last time I was there, but when the time is right, for now I’m focusing on trying to find something that might help.

The folfiri and Cetuximab have helped in the lungs, the nodules are a little smaller he also has a large pulmonary embolism, I inject him daily. I worry about the growing tumours in his liver, he has one measuring 6x6 cm, this current treatment hasn’t touched it, when he’s scanned next they’ll be bigger, so I feel we’re wasting time. Apparently, there’s too many for surgery.

We do try to do something nice when he’s not too bad, but the treatment is taking its toll. We live very close to to the coast, so regularly have a coffee and a walk along Teignmouth seafront. Our divorced daughter and our granddaughter, live with us, she recently started school, she’s an absolute joy and helps our spirits in more ways than she’ll ever know. 

Thank you so much for your advice, I will use it.

Do take care of yourself, all my best Budge x

Hi ,

Your GP can help refer you for a second opinion . Or actually your surgeon or current oncologist. This is just my own opinion but I would want it out with my health board and with someone with a good reputation for handling stage 4 patients . You are in touch with people on other groups who have innovative oncologist. I would think most of it would be done online just now . My mum got reviewed by scan initially . 

 Our helpline staff could give you some pointers also 0808 808 0000.

This is not a negative towards your oncologist. A lot of people do it to help navigate difficult health questions . People are thorough when picking a car so I don’t see why not with your health . 
Your husband has a good team behind him . I am like you too. When it’s someone you love !!  

Sounds as though your husband and you are both in agreement too and just want more information and depth to his treatment plan . Sounds very reasonable to me . I like to know not just current plans but potentially what can be achieved also .

Working on it now gives you more preparation time . You would maybe have to start all this in Jan and then it’s another few weeks making plans and preparations .

Take care ,

Court 

In real life I get straight to the heart of the matter too! We did the same with my mum . All legal matters dealt with and in the box . Then started to adjust our mindset . Today matters as much as any potential tomorrow’s. Some days better than others . 
Court 

Hi,  I’ve joined and posted on the Facebook group you mentioned today, I had 2 replies and so now hopefully someone will come forward with a recommendation for another oncologist, or suggestions of other treatments, so thanks again for that.

When you read of other people’s experiences, it seems quite a few don’t always get treated or supported as they should. At a time when they’re at their most vulnerable, they have to process so much, the fact I spend hours researching and reading to try to understand, I had to research medical terms on my husband’s CT scan report, some of it isn’t rocket science it’s just medical terminology, which anyone in a medical team could explain easily, but do they? It’s really quite disheartening.

Our oncologist has asked us to list all our questions for a telephone consultation on the 7/12, I plan on pretty much listing everything I asked so far, which hasn’t been answered, along with anything I can learn about treatments, immunotherapy, trials, well pretty much anything which might equip me with the knowledge to ask the right questions.

Depending on his response, do you think that might be the appropriate time to ask for that referral? I did read today, on said Facebook page, that someone tried to get a private referral to Royal Marsden, but it was still so slow, so don’t feel optimistic.

Thanks again Court, you were there for me at the beginning of all this, I always try to remember to try to keep my mind where my body is, at silly o clock. Tomorrow’s another day, etc.

All my best Budge.

Hi 

I think communication really comes into play in oncology. My mum had one oncologist who was very gifted clinically but was a bit brutal when communicating. Her current one is so balanced and spends more time . I would actually find it hard to go against her recommendation as I trust her judgement. I think that’s the difference. But he is willing to enter into the discussion with you so that’s a start .

I think it would be appropriate to raise it at that juncture if you feel you are no further forward .
There is a global trial finder for Colon cancer but you need to know if he is MSS .I am not sure how covid has impacted things . 
http://trialfinder.fightcrc.org/ Cancer research uk has a trial finder page too! 

It let’s you know what trials are running where !

There is a disclaimer and guidance on how it should and should not be used .

When my mum was in active treatment I used to be able to follow the current treatments , cell types etc but it has changed so much I am out of touch now . 
Lots of information on BowelcancerUk . 

Always here to listen . I know it’s limited but it’s here !

Does your husband not have a specialist nurse ? They can be really great at getting some of this information for you . 
Remember your GP might be able to facilitate it for you .

take care ,

 Court 

Hi 

Just had a look at cancer research Uk Clinical trials ? 
Seems there is one immunotherapy trial for MSS patients , not the normal MSI patients ?

Court 

Hi, Court I had emailed myself all the trials I thought might be possibilities but didn’t know what MSI and MSS meant, having now researched I have a better understanding, MSI have better responses to immunotherapy, MSS generally don’t and so I now understand why it’s essential. Definitely a question, hopefully I’ll find a trial for whichever he is. 
Just looking on Cancer Research trials, do you know the trial reference? I tend to read through them during the evening, trouble is I tend to drop off, then when I’m awake can’t get back to sleep.Dah!

Thanks so much for making me aware of all this, even if it doesn’t work out at least I feel like  I’m trying to do something.

Budge xx