Where do I start

Hi Pride 

Welcome to the forum . 
It’s such a shock to hear cancer has spread but bowel cancer actually still has good treatment options for a spread .

Have they suggested a treatment plan for her ?

How long ago was her bowel tumour removed ?

My own mum died a few months ago but she was actually a stage 4 patient for 15 years . First to her liver and then in her lung from 2014 to 2024 .

It really depends on how responsive they are to treatment. Despite my mums spread she got good results from treatment and that opened up other options .

Getting a good plan in place really does help put a bit of structure in place and makes you feel something is being done to stabilise the spread .

Take care ,

Court 

Hi thank you for your response my sister got bowel cancer or sorry it was found about a year ago and she underwent about six months of chemotherapy adjacent chemotherapy and a couple of months ago when she went for a CT and MRI scan they said it metastasized to her lungs so of course I asked the question does that mean she has lung cancer and they said no she still has bowel cancer but it has metastasized to her lungs so it's still classed as bowel cancer obviously we were in shock because we thought the chemotherapy was working but to add insult to injury they then told us that it was terminal and if she had further treatment it may only give her an extra couple of months my sister at the moment is not undergoing treatment because they have said that she has one to two years and she wants to spend those making as many memories as she can but I'm just a bit concerned she's under no one's care any longer and no one seems to know how rapidly this is going or if it is going at all so the whole family is a little bit lost at the moment especially my mother

Hi Pride,

I was diagnosed with bowel cancer in 2022 and was told it had spread to remote lymph nodes a year later and any further treatment would be palliative care only. It has subsequently also spread to my bones (spine specifically). I do not receive any active treatment (other than an injection to try and maintain bone density) but am still receiving care in the form of monitoring scans, blood tests etc. I also made a self-referral to my local hospice which opened up further support and care and have found a great local cancer support group, who deliver a lot of their support utilising a former forest school.

Like your sister’s my oncologist thinks that maximising my quality of life and making memories is now more important to my general well-being and that of my family than further treatment, other than that required for pain management. We have all embraced this including planning for ‘after’. Unfortunately, the cancer also triggered a neurological condition which means I can no longer drive but we have dealt with that challenge too.

Whilst your sister’s oncologist has indicated a likely timeframe mine never has but I have done enough reading about my type of bowel cancer which is rare to know I potentially have a year of life left. I don’t have a long and exotic bucket list but I am ticking a few things off. But, as Court says, some Stage 4 cancer patients go way past their ‘end date’. I hope your sister is one of those.

No treatment shouldn’t mean no care so ask her care team what they intend to do about monitoring her condition. Lastly, take this journey together it ultimately helps all concerned - I speak as someone who is fortunate enough to still have both my parents.

Wishing you, your sister and all your family all the very best.

Maninbath (Tom)

Can I ask Maninbath did you just phone up your local hospice ? I did feel as though my mum fell between the gaps when she left the oncologist. The palliative care team were really unhelpful but thankfully she had a great GP who did everything required but I do feel A leaflet telling us how to access care would have been helpful . It’s a big system . Even at the end I did not know you had to keep phoning to top up the sedatives and things like that would have been good to know in advance .

I did a bit of training in our local hospice a long time ago and it’s a service I think my mum would have benefited from , especially their experience in pain management.

Their projects are wonderful in our area . 
Forums are also wonderful for learning all that is available that’s for sure . 
After mum died I found a palliative care leaflet on the internet but no one pointed it out to me at the time . 
Our Moto was always hope for the best but prepare for the worst and it was a good plan . 

Hope you keep pushing those boundaries. 
Court 

I can totally understand that . Quality matters for sure but I would say she does need more information on system management for the future . That was a bit tricky for my mum but actually due to spinal fractures not cancer . But it’s a good question and certainly I did feel mum was a bit abandoned. 
Being proactive like Maninbath has suggested I think would have been helpful in our situation . 
Our helpline staff would be happy to assist and do have access to lots of information. I always thought we had more time but it took us by surprise in the end .

Take care ,

Court 

Hi Court. I did my self-referral on-line using a form on their website. I was then contacted and a nurse came round for a more detailed chat, closely followed by an Occupational Therapist. They’ve been very good at signposting help and services and just staying in touch. In fact, I’m off to the hospice tomorrow for a session of complimentary therapy (reflexology).

Hope you’re coping following the loss of your Mum. Keep up the good work you do on here.

All the best.

Tom

Hi thanks for all your applies I think my problem is I am trying to support on all fronts not only for my mother but also for my sister who is only 51. And believe me it's getting difficult because this still feels unreal one of my main issues is that my mother needs to speak to someone and needs to support but because she is hard of hearing there is no way that she can communicate on the phone and texting or emailing always seems to take a lot of time between responses and obviously doesn't feel like a real conversation I worry because she's not long had two strokes and also has an aneurysm at the moment and I get concerned for her blood pressure I took it to the doctors a little while back and even though my mother was in tears trying to explain how she felt all the doctor would say was oh well increased your blood pressure medication to bring your blood pressure down a bit and that's really not what I call being empathetic it was almost like your feelings don't really matter but as I said I have to look at it from all angles and I really have to have broad shoulders to carry all of this which I do find difficult I can never show it. As for my sister who obviously has had this devastating news has become what I feel is quite selfish and yes I know she is going to be angry but she doesn't appear to want any support not that she has any from the Medical Profession as she seemed as in your words to have been abandoned I'll be honest with you I don't know what I need all I need really is a way to deal with it I know my sister has to put things in order which to be honest she is doing I just feel she's doing a little bit too soon as I said before she was given one to two years but she's selling all I have stuff in her house stuff that she loved almost as if she feels the only has weeks rather than years I don't know really but believe me I find this very difficult to deal with I did try calling McMillan today but unfortunately I know they are really busy but I could not wait any longer on the telephone for them to answer being honest I just think we need some help maybe I'm drowning in this maybe I'm not I will never know unfortunately I now have to deal with things when they arise and I won't deal with them before that as I've said to everyone before when the situation arises I will deal with the problem but until then if you know what I mean

Hi Pride,

As someone in the same position as your sister I get the ‘selfish’ thing because it’s really about managing the time left. I too have become more ‘selfish’ but only because I value my time more.

It does sound like all of you are under tremendous strain. I don’t know if you all live relatively close together but if you do the only advice I can offer is to find a local cancer support group where sufferers, carers and affected family members come together and chat about their feelings and experiences. My cancer journey has taught me it really is good to talk.

 My wife’s coping mechanism is deflection but I think she found it helpful to come along to the ‘Fire & Feast’ events the cancer support group I attend organised over the summer. It gave her a chance to hear about other people’s experiences.

It might help your sister to talk directly to someone with lived experience of bowel cancer. Bowel Cancer UK have a peer support line and will try and match your sister with a volunteer with the most relative experiences to her own. (I am a one of the volunteers.)

Please persevere with trying to get help for all of you and keep posting here. I, for one, will do what I can to support you.

Kind regards.

Tom

Oh that’s a lot and your poor mum . She deserves a bit more than that . You are pulled in every direction . 
Do you have a Maggie’s Centre ? Relatives are able to go in there in person . I am sorry you had trouble getting through to Macmillan . If you could try again at some point as they do have some support that might help your sister or signpost local resources . I know some relatives get support through hospice too .

It’s so individual how people handle a prognosis. My own mum did not want to know from the start . Had everything in order but was out three times the week before she died having lunch . It was really important to her to live life to the fullest . I once heard a hospice worker say they are the leader in the situation and we follow their path . But at the beginning I found that really hard .

But your sister is much younger and must be incredibly hard on you all to see her go through this . I take it she did not want a second opinion ?

It’s very hard on the internet to support people in their individual needs but can certainly offer an ear to listen as it’s isolating and lots of variables to work through as they pop up . 
Even getting it down on the forum can just help a little .

Take care ,

Court 

Enjoy your session . I actually used to be an occupational therapist and was doing some training on a “let’s stay active “ for patients the week my mum was diagnosed. I left at that point but I think it did influence how we engaged with mum . Seeing how people were active  in various activities really helped .

Initially I first privately purchased a bath lift for my mum . I found it the next week behind her sofa . . Took her a while to get on board but really found it useful as time went on .

Really missing her but she tried so hard it drives me forward still .

Never had reflexology. Sounds bliss .

Court