Stomach, liver & Lymph nodes cancer

[MouldyOldey]

Hi. My mum has been ill for a while. They said it was cancer of the lymph nodes but that was the secondary one, so after having every test in the world (it feels like!) They have now said it's stomach & liver & possibly bowel as well (they want to check her bowel still)

I'm not sure what I want from this thread really other than somebody to talk to.

This is bad, isn't it? She isn't going to survive this is she? I feel like I can only ask her so many questions as I don't want to make her talk about it unless she wants to.

Is anybody there?

That should say: I’m NOT a Dr or nurse. Oh for an edit button!

waterlego Thank you for sharing that about your mum, I'm so sorry she isn't with you any more

My mum is very private & I imagine shields me from a lot. (She also shielded me with my dad although I was a lot younger then) I know that it was 'confirmed' in the lymph nodes & stomach but she wouldn't tell me if the chemo was as a hope to 'fix' things, or just to prolong her time... I've always assumed it was the 2nd one though.

I don't need her to tell me everything though, I just want to be able to do what I can for her & be there as much as I can... There is a complicated family situation that I hoped wouldn't come into this but it looks like it has, with those family members doing what they did, & my poor mum being the one to tell me. (I hadn't even mentioned visiting anymore so it was obviously playing on her mind)

I wrote a few angry texts to those people last night & then deleted them before sending.

Mum seemed really upset that the chemo has stopped working, they seem to of really sold it to her in January that 'Lets keep going with the chemo as it's working so well'
& Now this.

This place has been a real help to me in the last few days, I don't speak to anybody much in RL, it's just me & the kids all the time & my anxiety spirals with things like this, so just having somewhere to get my thoughts down has helped.

Thank you everybody

@MouldyOldey just checking in to see how you're doing this morning. I can relate to the feeling of upset at the chemo not working, to go through all that and then be told it was in vain is awful. Your poor mum and poor you. I'm so sorry your family are being so unsupportive, it's a time when you should be pulling together, sadly I am rather too familiar with this attitude too. I have a few unsent emails in my draft folder which I wrote when I wanted to 'get it all out'.

How is your mum in terms of mobility and activity? When I was in active treatment, I didn't have much energy so would prepare a little 'station' for myself on the sofa. So I had charger, notebook and pen, TV remote, hand cream, blanket, bottle of water, just the things that would save me getting up unnecessarily.

Hoping you'll be able to see your mum today Xx

@MouldyOldey I’m glad the thread is helping you. It’s good to have somewhere to vent and speak freely.

Thank you for your kind wishes, I’m just sorry I couldn’t have shared a story with a more positive outcome, but it sounds as though you are doing well at managing your expectations regarding your mum’s outlook and prognosis, despite perhaps not having been given the full picture.

In my mum’s case, she was very positive the whole time and continued to make plans for the future. I don’t know whether she was actually in denial or whether she just preferred to imagine she was going to be around long term. Either way, I just went along with it. We looked online at holidays together and she talked about going on a river cruise the following year. I obviously didn’t point out that she would be unlikely to be here then- she knew that from the information she’d been given by her oncologist. If it helped her to think ahead to an imagined future, I was very happy to help her indulge that. I think it helped her psychologically. I did have to bite my tongue though when she ordered a £20k summer house for the garden for which there was quite a long wait 😂 (Sadly she didn’t live long enough to see it, but my brother now lives in her house and the summer house is there and gets good use!)

All her life she was a very positive person, and she was never going to be the type to just accept that her life was coming to an end, or to talk about that. Having said that, she did communicate her wishes for her funeral but again, obviously didn’t want to actually have a conversation about it so just wrote it all down and told me where to find the piece of paper.

It sound as though you have a lovely relationship with your mum and I’m sure you’ll be able to support her admirably. I took my mum out and about when she had the energy, mainly just to garden centres or cafes, and I spent a lot of time with her at her home, just chatting and then doing some jobs around the house while she slept. I gave her hand massages with nice lotions as her hands were dry and sore after the chemo. My DD, who was quite little at the time, enjoyed doing the hand massages and painting Grandma’s nails. Apart from that, I just helped with lots of practical tasks that she didn’t have the energy or inclination to do. Liaising with carers, taking her to appointments, making her little snacks and meals etc.

Of course, all of my comments are from a position of supporting someone whose cancer is not treatable and who is at the end of their life, and that might not be the situation for your mum, so please feel free to take everything I’ve said with a pinch of salt, but it is probably sensible to consider all outcomes so you feel best equipped to deal with any eventuality.

Hope you have a good visit with your mum today. 💐

Thanks for checking in Fantasea I spent 4 hours with her today. Sh

Can you self refer to your local hospice? Ours have helped me talk things through, the anger is a very natural response to everything, I wanted to rage against the world at times. I found Macmillan useless but we have a local cancer charity who were marvellous, I was able to talk things through with the nurses there too.

Hit post too soon!

She seems like her normal self apart from she is obviously in a lot of pain (she told me off for telling her to sit down tho, she is being brave)

I took her flowers & her fave foods snacky foods although she said she's lost her appetite.

I asked if the cancer was in the stomach, lymph nodes & liver now? & She said that she was under the impression that it was in the liver already, so I said I knew it was suspected but didn't know if it was confirmed? (My sibling walked in later & said 'I thought it was in the liver already?')
So there's obviously some confusion there.

waterlego Those are lovely memories you have of your mum & thank you for sharing them. She sounds like a lovely lady with a lovely daughter
That's a nice ending for the summer house too!
The hand massage is a nice thought.
My mum does make plans but she ends them all with 'If I am still here' & she says things like 'Im not dead yet, still here!' & that's just her humour.

I'm doing a few more little things around my mum's house without making it obvious, like tidying around when she's gone to make a cup of tea etc. She is much less mobile than she was but she does still get out (odd night down the pub!) so that's good.

Mum is very worried about tomorrow. She said the fact that it has spread has 'Absolutely floored her'

I briefly mentioned the visiting & told her that I was trying to stay off the group WhatsApp like she asked, but that I wish somebody would of told me that they were down as named visitors when I said 'They said that 3 named visitors are allowed but only mum's partner is going & they won't let me come too', but that I should of pushed it further & asked if anybody knew what was going on... She said that everybody else had visitors, she was feeling all alone, & she sat outside the hospital all by herself yesterday & cried
That just breaks my heart.
I was sat at home doing nothing & now her memories are going to be of sitting by herself

My fucking family

bloodywhitecat That's a good idea, I don't know, I'll look into it.

Fantasea My mum has a little 'station' like that too
She can't manage the stairs much so she sleeps downstairs where the bathroom is.

I'm so scared about tomorrow. I'm so worried about how my mum is going to take the news (whatever they say)

She had 11 rounds of chemo all together & she's hopeful that there's something else they can try.

Hi. I'm new to your thread but just wanted to offer support for tomorrow.

I lost my mum to bowel cancer which spread to her stomach, ovaries & liver.

Sending you love and positive thoughts.

Thank you Spaghag That's kind of you. I'm sorry about your mum

I’m here, this sounds so tough for you @MouldyOldey. Is your mum in hospital ?

@MouldyOldey please don't beat yourself up that your mum was alone yesterday, that's on the others, you're doing all you can. I can understand how scared you are for her tomorrow, I'm presuming you're going with her? Hoping that you'll be able to get some rest tonight Xx

Fantasea Thanks for the kind message.

She's going with her partner tomorrow. It's this weird kind of reality where I'm involved but not involved. So more waiting by the phone for me... I'm sat here now thinking all of these thoughts. I just want to be with her.
i text her & she seemed In good spirits. We had a joke about a stag beetle in my garden!

i don't want to go to bed because I don't want to think anymore.

i remember when my dad got his 'Theres nothing more we can do' chat like it was yesterday. I was there. And it's all I'm thinking about.

Thanks Snowdrops She was in for a few days but she's home now. Back again to see the consultant tomorrow & discuss a plan (but I'm not sure how much of a plan there can be now chemo's stopped)

I hope that the consultant appointment today goes well. I know you said that there is no more treatment, but hopefully they can plan for pain relief and keeping her peaceful and pain-free for as long as possible.

Snowdrops Yes of course, I'm just being negative. I'm hoping that there is something else to say, not least because if they say there's nothing else to be done then she will feel like it's been a wasted trip (she hates that journey to the hospital)

I'm so scared

All done. They think that the chemo got rid of all the cancer in the stomach & the lymph nodes but that now there's a new tumour in the liver.

Further tests to follow.

@MouldyOldey I'm really sorry to hear your update, you must feel awful. Here to hold your hand whilst you wait for the tests Xx

Thanks Fantasea

I asked if the chemo will re-start if it's cancer of the liver & she said it will be chemo through infusion.

She said she is 'Feeling quite positive but gutted that the other cancer might be gone & now there's a new one'

@MouldyOldey your poor mum and poor you, it's a lot to take in and deal with. Has the consultant given her any idea when the chemo will start? I know it's a different cancer, but many ladies on the OC group I belong to have had a recurrence in the liver and after chemo are back in remission.

Thanks Fantasea I'm glad you have people to talk to who are going through similar things

No, they want to do the biopsy before anything else. She's not really ok tonight, she had some of the food I took her but she's full of worry, again, & it's more waiting isn't it

@MouldyOldey yes, it's a good source of support.

Of course your mum is worried and the waiting is just awful, for her and for you. You're just waiting for the post and the phone to ring with your nerves in shreds. It must help her to have some food brought to her, I lost a lot of my appetite in the run-up to treatment.

Thanks for talking to me Fantasea. I let my oldest stay up to keep myself busy & now I'm just sat here now not knowing what to do with myself.

Both of us thought it would be 'So this is what's happening now' (even if it was no further treatment) but we didn't think that it might be 'So now we have more waiting'.

Yes, she doesn't have much of an appetite usually so I'm glad she ate something. Little things like fave foods/flowers (which she loves) are all I can really do right now.

@MouldyOldey Morning! How are you feeling today? Unusually I've got up early as I've got my gardening man coming to cut my grass this morning, something that I no longer can do myself. Never mind, he makes such a good job of it, miles better than I could do lol.

I hear you on the waiting, it's like the queues at Disney, you think you've reached the finish line, turn the corner, and then there's another huge queue and so on. The waiting and uncertainty are dreadful and the fact that you're so helpless and worn out just adds to the awfulness of it all.

You're right, little treats for your mum is the best way forward. When my appetite was poor, I found I had more success with smooth foods. It wasn't that I couldn't chew or swallow, I just didn't fancy eating more if it wasn't smooth. I'd look at it after a few mouthfuls and think 'oh no'. So I ate lots of things like soups, custard, ice-cream as then I could 'keep going' and ate more that way. Everyone goes on about how cancer patients shouldn't eat sugar but my oncologist says this is a nonsense, you need calories so eat what you fancy.

Hi Fantasea I hope your garden is looking fabulous

I'm ok, thank you. I spoke to mum on the phone, she's pleased with her cardigans, has washed them & tried them on.

She said that the consultant said they were going to do one more scan late May just to be sure & then they were going to announce her cancer free...

That broke my heart a little tbh. She's being so brave tho. She said they think the liver cancer is completely unrelated to the previous cancers but it's often caused by the chemo isn't it? Or made worse by the chemo or something. That was my understanding but I didn't say anything, I'm sure the consultant knows what he's talking about.

That thing about the ques at Disney, is an excellent way to put it!

I hadn't heard about the no sugar, all mum is really eating is a small amount of biscuits & sweets so I was really pleased when she ate 2 of the cheese topped rolls that I took her (I feel like I'm treating her like a child saying I'm pleased that she's eating)

She's still smoking & drinking her wine. No judgement from me, of that's what she needs to get her through.

I'm glad you found some foods that were slightly easier for you. Them being easier to eat makes perfect sense to me.

I hope you are having a good day.
My mum was asking if she can come out for the day with us next time so I'm going to see if I can make that work