5 ½ months on and still struggling to believe mum has gone

I am in absolute floods of tears reading some of the posts on here and the replies.  I am so sorry for all of your losses.  It is so painful and heart breaking.

I logged on to this forum today as I have been feeling down for a while.  I lost my mum in March this year.  She had secondary cancer – her cancer had spread from her womb to her lungs and eventually to other organs.  My mum had womb cancer in 2017, she had a hysterectomy but as we eventually found out…they must not have caught all of the cells.  4 years later, in May 2021 my mum received a diagnosis of stage 4 cancer in her lungs.  We were beyond devastated.  This diagnosis came just 18 months after we lost my dad – we were still grieving for him.

Towards what we now know was the end, my mum had a 3 week spell in hospital.  She detested every second of being there and just wanted to come home.  She was desperate to come home.  She went into hospital with a suspected chest infection, she also wasn’t eating or drinking much before she went into hospital (she had been coughing for months since the diagnosis and was also being sick etc.). Whilst in hospital she had scans and x-rays and countless different antibiotics.  Nothing was making any difference.

On 2^nd March, I hadn’t heard from my mum, she had been texting myself and my sister during her stay, so it was unusual not to hear from her.  I rang the hospital and they said she was “fine” but couldn’t hold her phone in her left hand!  I started to ask why but decided I just needed to get to the hospital….my gut told me something was very wrong.

I arrived at the hospital to find my mum looking tired and weak.  This wasn’t unusual throughout her hospital stay, as she had been feeling very down, weak and utterly exhausted.  She was barely eating or drinking.  However, she appeared to be losing the use of her left hand, her speech was also beginning to be affected but I believed this was due to her exhaustion.  No one appeared concerned at all.

I asked to speak to the doctor, but he was too busy.  I kept asking and eventually he came and said that there was nothing more they could do and that it was the cancer that was making her so ill and causing all the problems.  They had initially thought they were treating a chest infection of some sort, but it seemed it was the cancer.  I was told my mum would be referred back to her oncologist (who hadn’t seen her once throughout her 3 week stay).  The doctor told my mum she could go home.  Although my mum was weak, exhausted and very poorly, she was hugely relieved to be going home. 

I told my mum I would go home and get some stuff so that I could stay at her house to look after her whilst she recovered, from what I believed to be exhaustion from lack of food and drink and sleep.  Don’t get me wrong, I knew she was terminally ill but I 100% believed she would come home, sleep and I would feed her up (she hated the hospital food, so this made her want to eat even less).

I went to my mum’s house, put the fire on etc. and went to the shop to get some decent, hearty food to cook.  I then went back to the hospital….

When I arrived back at the hospital I was shocked at how my mum looked….she was lolling on the bed, half asleep. She roused when I got to her bedside.  She went to the toilet and refused my help, even though she was extremely weak.  I won’t go into all of the details of the hospital discharge – this was shockingly awful and upsets me greatly.

I was left to sort my mum out, find her a wheelchair, get her to my car, get her in the car etc.  I hadn’t taken anyone with me because I genuinely didn’t know she was going to be in such a state when I picked her up. 

I was PETRIFED. 

The journey from the hospital to my mum’s house was awful, she was just leaning to one side and didn’t speak.  I was really, really scared….but still thought in my heart of hearts that she was just exhausted.  I believed she would sleep for days but I believed I could build her up a bit after that.  I had no idea she was dying.  Why did no one tell me?

That night and the day after mum came home, I began to realise something really, really wasn’t right.  I messaged my sister and said “this is more than just exhaustion”. 

I will cut out the awful details of trying to get a doctor or district nurses to come out.  I was trying to tell them about my mum’s left hand, her left arm was now just hanging.  I began to think she had had a stoke because of her speech too.  The doctor was awful and told me even if a doctor came out there would be nothing they could do!  Eventually, the doctor’s surgery sent out an advanced nurse practitioner.  She arrived and began to talk about “anticipatory meds”.  I’d never heard of these and didn’t know what they were….but from the sound of them…I knew it wasn’t something good.

I began to panic and started asking what the heck was going on, what were these meds and why were they being prescribed etc.  I felt distraught.  I felt like people were just giving up on my mum, throwing her on the scrapheap.  I couldn’t believe what was unfolding.

From the night I brought my mum home she never got out of bed after that.  My sister and I looked after her for 2 weeks until she went to the hospice where she spent her final few days.

The thing I am struggling with the most is how fast she declined and why no one at the hospital told me she was dying – I just didn’t know.  Like I said I knew she was terminally ill and that she was very poorly, but I didn’t know she was actually dying then and that breaks my heart.  I felt like I was letting everyone give up on her because I could believe she was dying and I couldn’t understand why people were all of a sudden talking about anticipatory meds and hospices and hospital beds at home.

I also wonder if my mum knew she was dying, because she talked about her next chemo and when she would be seeing her oncologist (in her slurred speech).

I wanted to ask her if she knew…but I couldn’t do it because if she didn’t know, I didn’t want to frighten her or break her heart or spirit.

She obviously knew in the end, as she talked about letting her go, she wanted to go as she’d had enough.

I still, even now, can’t get rid of that feeling that I gave up on her – was there something else I could’ve done?  Could I have made her eat/drink? Could I have requested that her oncologist see her?

This is what I have been struggling with…the speed of my mum’s decline…but from reading some of these posts on this forum, it seems it is not uncommon.

I have ok days and very sad days….today I feel very sad.