Hi SammyHR,

I felt a sense of connection with you when I read your post, I feel like I'm going through very similar right now (especially the last paragraph) and had too been feeling guilty.

My momma is 58 and was diagnosed with low grade serous cancer nearly 3 years ago. After experiencing many set backs and also some wins along the way, things escalated 2 weeks ago and she's been given weeks left to live due to a severe bowel obstruction caused by several tumours.

my world has stood still, I wake up to anxiety burning in my chest. It wasn't until yesterday after looking at videos of a bubbly, vivacious, vibrant, independent woman that I realised that the person in those videos is gone.

She is finally home after a horrendous 10 days in hospital (due to the bank holiday we couldn't get any answers and the care / communication between teams was very poor). She can't eat anything but 40 sips and ice cream, and even most of that is filtered out of her stomach into a tube through her nose into a bag. She is painfully thin and frail, I no longer recognise her. I cry in the car on the way home after every visit. 

like you, I'm stuck between wanting her pain to end to wanting to keep her as long as I can.

im sick of people saying things like "well, at least you've had the chance to say goodbye and prepare yourself - some people lose loved ones in car accidents and that's it..." in no way do I minimise the pain of losing someone so instantly, but until you've watched someone you love, someone so eager to live disappear in front of your eyes, to have seen the fear in their eyes as the community nurse so robotically talks about how she'll know she's dying, to see them suffering each day and feeling guilty by enjoying any kind of pleasure in your own life, wanting to break down every time she removes her night shirt and you see her protruding bones so you can wash her as she's incapable, to try so hard to memorise the details of their face and voice because you don't know when will be the last time, although you know it will be soon - I don't think you can draw that kind of comparison. It's a living hell.

I feel like I've already started grieving, and fear I'll be grieving all over again when she moves on to the next life. I'm angry about the injustice of it all, the dehumanisation of my momma, the lack of care. 

I apologise as I don't have any advice other than laughter is the best medicine. My mum is of sound mind which I don't think is true for your Mum's case (sorry if I got that wrong) and we've shared a few giggles when we can even though it's hard - but mainly laughter with anyone else; friends, family, partners etc even if it's only fleeting, it gives me hope that I will be able to find happiness in a world where she isn't, despite how much that scares me.

I've also started an art class once a week - I hated the idea of going but it took my mind off things for 2 hours and gave me a sense of purpose; my mum always wanted me to do something more creative. I also met someone on the course whose mum is also in palliative care.

which leads me onto the idea of community. As heartbroken I am that you're going through what you are, reading your post let me know that im not alone, and that im human for feeling the way I do -  so thank you. Keep on writing your thoughts and feelings, find others in similar situations and let them become part of a new support system who genuinely understand you; it's the community none of us ever wanted to be part of, but all of us desperately need right now IMO.

Sending you love, hope and strength.  
 

I'm so very sorry for you and your mum and felt the pain just by reading your reply - I know just how you feel with that horror of seeing someone you love so dearly fade away and there is nothing that you can do to help :( It does help a little too to know someone understands because pain and grief can feel so very isolating. Your mum is so very lucky to have you because it's clear how much you care for her.

You're right, my mum is not in sound mind but does retain some long term memory and sometimes, just for a moment, we can share a laugh if I remind her of something funny from the past but then she's gone again. Those moments are so precious. But then those moments of joy in deep grief can also be really painful. Feels a lot like there is no way to win.

I think I should probably get involved in something locally too to keep busy like you are because even a short time to focus on something else is a break from it. It's so important you have that time to breathe and let your mind feel a bit normal again.

Thank you for listening and offering kind words and advice. And just so very sorry again that you feel the same. Hugs x
 

Hi thier to all that have wrote im so sorry youve had to go through this...

Its certainly not what i ever thought id have to do now my days seem sadder & sadder 

As my mum went to her GP in late june 2023 for a sore throat to what she thought was initiated from swallowing a hot roast potato it just wouldnt go away so the GP referred her to ear nose throat department where she had a camera put down & the examiner said she thought thier was a slight abnormality on the right side of her hypophraynx so was referred for furthur investigations - fast forward a week or 2 where she had a biopsy although results didnt come bk in till 02 aug 2023 & we was in the thought process of it being really bad (as a heavysmoker) but it was actually more toowards the better news to what she imagines so she was diagnosed with carconia in situ stage 0 no evidence of actual invasive cancer and the plan was to receive curable radiotherapy so they inserted a NGT tube to keep & maintain her weight throughout the upcoming 6 weeks of treatment 65.1Gy dose as she always a low weight & small height...

radiation started 21st sept 2024 - went well completed the whole corse which ended 1st nov 2024 even managed to increased her weight by a few kg not much but no loss in weight some days she was even making her own way bk home on a bus so waited the 12 week waiting time for the PET post treatment scan which shown some activity in her throat near where she received the treatment & also a small nodule on a lung, but ensured us this could be debris from the radiation as they frequently see this so will repeat the PET scan in 4 weeks time so march 2024 the repeat PET results end of march turned the whole scenario completly upside down they said she now had recurrent metasize throat & lung highly suspicious of cancer the mdt said likely stage 4/5 deemed incurable & a quick to pallative care we was absolutley devastated to of been told she was super rare to of detected it so early at stage 0 accounts for 1-2% of people as 80-85% of people usually present with it already advanced unfortunatley 

This is just couldnt believe we even walk 2 n half miles back home thinking surely this isnt right it cant be to what i know a cancer at least needs to be stage 1 invasive at the very least to have the mobility to spread 

then on june 06th we had to take her hospital via pallative nurse assessing her with an airway obstruction so in ambulance we go where they at first they wasnt gonna perform cpr on her as it would cause more damage i was in such disbelief then 5 mins later they said they perform a emergency tracyostomy which she agreed to bless her poor heart so beave then the surgeon said this wont maake her better in any way its just buying some time i was still in denial anyway cause i just couldnt get me head around it how radiotherapy couldnt irradicate a stage 0 non invasive cancer id of beleived it if she never went for it and i understand some cancers are aggressive this that bla bla but from aug 2023 to march 2024 from stage 0 to end of life was just sinking in at all 

so me and my brother learned the tracyostomy care,suctioning,cathiers,tube changes pad changes as she wanted to come home an hospice wasnt an option then or she would of gave in then as she said in her words (dont mind in the end but not yet or iv done it all for nothing) so we did 24 hrs on 24hrs of then changed it to 2 days/nightz on/off as didnt seem to get long of before going back as itvwas an all night n day thing with the suctioning some days up 10 times suctioning within 15 mins then ventalator aswell as now the stomach RIG feeding tube which meds had to go down aswell each 4 hours rrig ballon deflate/inflate it was hands on but we got her past the maximum 6 weeks they predicted and got to 24th sept where things started getting scarier blood from tracy an suctioning rapid decline i had to wait till she went sleep before i could sit on the loo and sob my heart out anything emotional on the telly i couldnt watch i used to look at her an think please please go to sleep in a peaceful way i cant bear this sadness each day but she would write on her note pad (thanks for keeping alive) which was a total heartbreaking we bought a bell to ring if we went downstairs or id she needed to wake us up as we was on the bed sofa in her room but 24 th sept things got trickier where we was told she wouldnt be much longer an it would likely end in a catostrophic bleed that would likely be devstaing ending so we had no choice but to take her in hospice i promised her she would be home again and to not think she wasnt going to see her home again and it was more for pain control as she still wasnt aware of the timings she didnt want to know or tried protecting us from knowing while we were her she lasted 8 days in hospice where i visitedd daily untill the 04th oct i was on my un be known last visit she was writing on her pad conversating asking what evreyones doing etc i said im gonna get going in a min mam she said yh ok i took her to the loo where she still mananged just needed an arm to hold her walking thier put her back in her bed an she tapped me on my shoulder i turned around n their it was the catostrophic bleed in front of me and the paitinets on the ward rhe catostrophic bleed in full action the lookon her face is the last ever aluve time i ran up the corrider to fetch the nurses as they didnt seem to care with paitients in thier end of life and unfortunatly they gave her the midazalam an sedated her the most traumatisng ordeal in my life but also have to be grateful i was thier as if not she woudnt of been able to alert the nurses and would of endured the ultimate suffering as if it wasnt already living a horro movie so im glad for her she had me in the end to not of it that much worser 

now its seems to be that thier was always an advanced lung cancer throat cancer drom day dot likely stage 2,3 upon her diagnosis of stage 0 

turns out if theyd of gave her pet in the begining they would of picked on this and discussed other treatment plans rather than a futile radiotherapy that was mever gonna make any diffrence to her as was consistent with a stage 0 dose 

thier reasoning was they dont usually perform pet scans on stage 0 paitients 

despite already knowing only 1-2% only ever present with stage 0 as 80-85% present at a advanced stage already the fact she would of been a medical miracle should of at least prompted them to requestion the staging with a high risk smoker 

but thats the emd im sorry for the long read but felt like im sharing some sort of info on it whether it be good or bad as not all cancer stories end how we want them too gutted absolutley guttered )-:  )-: