Relatives and friends

brighty08

Upset and Fed Up After Oncologist

Hi everyone, I’ve just come back from an oncology appointment with my husband. Things just keep on getting worse!

So background - husband’s (age 45) bowel tumour found after going to A and E and emergency surgery to remove. Possible liver mets and confirmed soon after. 4 rounds of chemo before liver surgery in August to remove 65% liver. A few complications after surgery but he eventually got through. Recovered well and had follow up MRI about 14 weeks after surgery when another tumour has shown up in liver. Urgent PET scan which confirms this.

So have just come home from appointment - there are 2 small spots on the lungs that are showing and plan is for a MDT meeting to discuss and confirm what these are before moving forward with chemo. (Idea was chemo to shrink liver tumour then surgery). I had accepted this and was ready to move forward with plan.

Now onc saying that if they think they are tumours in the lungs, they will have to think whether surgery is a good idea. Or ‘worth it’ was the impression I got. Think chemo is still the plan though but obviously I just want the best possible chance of a cure (like we all do). I understand that chemo is the best course of action at the moment but would be good if it was still with a view to surgery at some point.

I hate this - feel like you deal with one bit then it all changes and gets worse. Finding it very, very hard to cope with everything at the moment.

I know everyone is going through a rough time but just wonder how people/relatives cope. Struggling! And think it’s worse because of Xmas coming up - Baa Humbug!!

Love to everyone :x::x:

brighty08

Thanks @Lexi for your reply. Yes, it’s so hard. I thought (perhaps wrongly) that after the liver resection we would have a period of normality (obviously after the chemo) and think it was a big shock to find something had grown so quickly. Obviously I was aware of reoccurrences but didn’t expect it so soon. It is a sure kick in the stomach.

Hope your husband is managing with all the treatment he’s having? My husband is amazing, am so proud of him, working away as usual. I think it’s keeping him in the present moment which is what I need to learn to do. I’ve always been a planner and realise this doesn’t work well with bc. Sending love :x::x:

Lexi

@brighty08 I have to say we kind of feel rather lucky to be honest, my husband had a very pressured job and was unable to return to work ( he was very gutted that his brain couldn’t longer function as it did before) we were faced with running out of sick pay and losing the house or push for a medical retirement, so we did apply for the medical retirement and he has just received it, which is lucky because he is 4 weeks post second liver resection and still has all the drains in and now we have the lung nodules in the back ground too, life is just a complete juggling act! I also have quit my job and we have sold our house, we are going to live by the sea with no mortgage and no financial worries and focus on leading a healthy life / juggling treatments and care take care brighty08 :x::x:

GD62

Hi @brighty08 Sorry to read your news about your husband, don't give up hope as maybe with a good response to chemo then he may become operable.

hugs and best wishes :x::x::x:

brighty08

Thank @GD62. Yes I know and I suppose surgery at the moment is still a possible down the line depending on what they decide next week at the MDT meeting. But as you say, lots of stories on here of situations changing after chemo anyway.

Best wishes to you too. Hope you’re doing ok - sounds like you’ve had a hard year. :x::x:

soph86

Hi @brighty08 sorry to hear your news. Personally though I would say chemo sounds like the right option right now. If the cancer is agressive it needs something to knock it back. Surgery can sometimes come with it’s own problems such as growth of other Mets during recovery (at which point he won’t be able to have chemo because he is recovering ) and sometimes the emergence of new Mets particularly in the areas where surgery has been performed and the body is healing. There are a lot of people on this forum who have responded very well to chemo and after being zapped with the super strong stuff they have been able to move onto maintance chemo which offers a much better quality of life. Hold on to that I would say and go into this next chapter with as much positivity as you can muster. :x::x:

brighty08

Hi @Lexi. Sorry you’ve had to deal with all of the work issues. Certainly another pressure you both don’t need. But your plan of house by the sea sounds great 👍🏻

My husband is a contract worker so there is no sick pay. It’s not been easy but he worked around chemo and while recuperating from the ops. He’s lucky in one respect he’s been able to work from home as a lot of his work is done by telephone and on the pc. He also manages to work around travelling to meetings around the country. Very proud of him the way he’s managed every thing. Hopefully the chemo will be kind this time and it will work out.

Appreciate your messages. Thank you. All the best. Take care. :x::x:

Sasa

Hi @brighty08 ,

Sorry to hear your news, I really do know exactly what you mean as we have been through this. First surgery is an option, and then all of a sudden it isn’t. 😪

The thing to keep in the back of your mind (hard as it most definitely is) is that surgery doesn’t necessarily translate to longevity and sometimes the oncologist needs to juggle providing best care, with what the patient and family want. It’s a bit like the difference between being a good parent and a nice parent. And naturally most want the surgical option.

Marks oncologist is always at great pains to tell us that with stage 4, surgery that is particularly invasive can reduce prognosis. It’s bloody tough to hear, but at the end of the day I don’t want Marks time to be less of a life than it could have been. Nor does he.

Could you perhaps ask the oncologist to fully explain why surgery isn’t an option any more?

Mark had ‘spots on the lung and in the perineum’ which quickly started to grow after his emergency surgery, so please don’t be too quick to knock the non-surgical option.

Sarah :x:

Lirio345

Sending hugs @brighty08 and hope that you get clarification soon, take very good care, Kim :x::x:

Lexi

@brighty08 Wow you have done so well, truly amazing really! I really have got my fingers crossed for you and hope that everything moves forward for you in a positive way :x::x::x:

brighty08

Hi @Sasa. Thanks for your message. Yes, all understood and I know what you mean. Will just have to see what they say next week and hopefully will get started with chemo soon. Poor husband - keep saying that and I know it’s going to be hard again. (I had chemo for breast cancer so fully know how crap it is but would do it all again).

I think I read Sarah, in a different post you said about not thinking about the past and future too much. Do you have any techniques for this?! I really need to focus on today and perhaps only a week ahead but find it so hard not to think awful thoughts about the future. Fully appreciate your reply as know from your bio things must be tough for you also. :x::x:

Thanks to @Lirio345 as well. Appreciate your kind words. It does help knowing there are people who care. :x::x:

george1960

I'm so in ore of your strength like my wife who has taking on loads of things to do with my treatment over the last year. But there is only so much you can do like I say to her I love you to the the end and beyond and always but you need to take time for yourself so I think you need time.
Take care hugs and lot of live sent.

:x::x::x:

brighty08

@george1960 thank you for your lovely words. Think it’s because we as partners feel like it’s happening to us as we’re there the whole way through. And if I could go through any of the physical stuff for him I would gladly do it.

Thinking about going to our Maggies centre just to talk things through with someone other than husband/family.

You take care. Love to you and your wife. :x::x:

determinedjoan

Defo recommend talking to someone outside of family & friends who is trained & experienced in listening to people dealing with cancer, which is bloody hard for family as well as for patient. Thinking of u & sending love 💗, hugs 🤗 & healing vibes :x:

Sasa

Hi @brighty08, yes you read right, the very first thing I reached for literally the night of Marks diagnosis was The Power of Now, and it totally saved me. This sort of thing interests me anyway, and it’s a bit of a hobby for me in a way, and I’m always looking at stuff about becoming happier with what our life is, rather than hankering after the ‘what ifs’ but it is a skill that we need to really work at to be good at it like anything else really. Put it this way, if it was me with the cancer I’d be off doing retreats and all sorts 🤣🤣🤣

If you’re feeling wobbly, try and switch off the verbal rhetoric you hear in your head, and savour the moment of Now, which could be how cosy you feel snuggled into your gorgeous bed, or seeing the first snowdrops appear - anything that floats your boat really. That enables us to be truly happy with now. It’s all about switching off the chit chat that goes on in our brain as it is usually concerning the past or the future which we have no control over. It’s also usually negative stuff too, stuff we could do without!

I wondered where you were located as there may be members who are local to you who you could meet up with?

Also, don’t forget the private area on here where you can post with gay abandon without worrying about putting your foot in it with those of our friends who have cancer. We are quite nice there, and we will look after you!

Take care, hope you feel better soon, as well of course as hubby!

Sarah :x:

brighty08

Thanks for your message @determinedjoan. Love, hugs and many healing vibes sent back at you.

Thanks Sarah @Sasa for getting back to me once again. I will look up that book. I’ve not had much luck with books like this though in the past - my husband bought me one to help me not worry (way before all of this started) and the message I got was basically ‘don’t worry’ (no help with how) which wasn’t very helpful!! 😂. I will look into it though.

I am right in thinking this area is private or is it a different one?

Yes, there is actually a meet of local members next week but I unfortunately can’t make it. But next time hopefully.

You take care too (and hubby). :x::x:

brighty08

@Sasa I just looked and can see the private group. Oops - I thought this thread was on there. Husband will know it is me with the ‘Don’t Worry’ book. Ha ha!

Sasa

Haha yes that’s why I go on the private area, as some things I wouldnt want him to see.... glad you found it @brighty08

The power of Now should be in any library, I wouldn’t go and buy one in case it doesn’t suit you. Maybe look at the Amazon reviews? What it does do is explain why we worry, so that if you ‘get’ what Tolle is saying (which you may not) all becomes clear which then enables you to learn to ignore the chatter. But you do need to get on with the book, which isn’t for everyone...

Hope to see you in the other area too!

Sarah :x:

jandals

@brighty08 I’m totally with you! Was talking to someone else about consultants who often show their lack of enthusiasm or energy investing in us or sense of humour and how crushing that can be even when the news in the appointment isn’t always bad (always makes me think they’re not telling us something). I do think now that they’re trained to manage our expectations so that we expect the worst rather than hope for the best... probably because they don’t want a lawsuit against them! I use the apps ‘insight timer’ for free guided mediations and body scans to stop myself thinking at night. You can pay for stuff on that ap as well if you want to. I also found the ap ‘headspace’ quite good... again I just use it for free things...
thanks
Katja

brighty08

Thanks for the book title @Sasa. Will make a note of it and have a look for it at the library. Definitely sounds worth trying. I appreciate your help.

Thank you also @jandals. I will also make a note if the apps and try them. I’ve used Headspace before, that seems to be good. Just not very good at doing it every day :-/. Thanks again. :x::x::x:

SMR

@brighty08 I think we’ve all felt that punch in the stomach. Always waiting for the other shoe to drop. Everyone of us unfortunately has a story like yours, but take strength from our stories because we’re all with you. :x::x: