Our lives have changed forever

3 minute read time.

The lives of me, my two,sisters, my husband and our son and my brother in law changed forever May 20th 2022 when my beautiful mum was diagnosed with rectal cancer and shadows on one of her lungs. Since then she has faced a barrage of hospital appointments, phone calls and more medication. It’s hard to believe it’s only coming up to a fortnight since she was diagnosed it’s gone that slow. It is so overwhelming for us all especially my mum who’s 76. Her consultant said her cancer is treatable (not curable). Mum is having surgery on 9th June to have a stoma bag fitted but before that we have to go the hospital on 6th to meet her stoma nurse then she has to go to another hospital on 7th June for a full body scan.
On 30th May I took my mum to hospital for her prep op assessment, after being there for a few hours a nurse informed my mum that due to what had shown up on recent heart scans mum was needing to speak to the anaesthetist and was asked to come back the hospital 31st May.
Mum was so poorly on 31st May so I rung the hospital and spoke to a lovely lady in the pre op department. She informed me that the kind of conversation the anaesthetist wanted to have with my mum is not the kind of conversation you have over the phone, I explained my mum was in a lot of pain and felt too weak to drag herself up to the hospital and that mum was in bed and I was dealing with all her telephone calls.
Apparently they are concerned that my mum is at risk of either not making it through the operation or going into cardiac arrest some time after surgery due to issues with her heart and the anaesthetic. They were trying to decide if mum would need a bed on HD or ICU after surgery. I then had a conversation with my mum about DNAR (Do No Attempt Resuscitation). Me being a nurse I have had this conversation so many times with people, never ever did I think I would be having it with my own mum. Straight away mum said she wanted a DNAR put in place. I now have to let my sisters know about this.

Following the stoma bag surgery mum will need a series of chemo and radiotherapy to blast the shadow from her lung and to shrink the tumour that’s in her rectum. The consultant said somewhere down the line mum will probably need to have her rectum removed and possibly one of her lungs.
The hospital have been brilliant with her considering her diagnosis was almost w weeks ago she has been back and forward to the hospital 5 times with more visits to come before surgery. Our GP surgery have been wonderful (which is great as it doesn’t really get a good name for itself). I have rung a few times near in tears asking for pain relief for my mum, for her pain relief to be increases, for something as she is not eating, etc, and each time a GP has rung back and sorted things out for us. Mum has been appointed 2 nurse specialists at the hospital and a support worker, who are in contact with us 3 girls.
There is just so much going on I don’t know whether I’m coming or going. One of my sisters lives with my mum (and has done since our dad passed away suddenly 9 years ago) But she also works from home and is sat in her room from Monday to Friday working. One sister lives about 20 minutes away and I live in my mums road. I’m a nurse so I’m kind of taking charge of phone calls etc.
It is so upsetting seeing my mum suffering. I’m finding it very difficult to cope with it all. When I’m at my mums I put this big brave face on but once I get home I crumble. It is like we are living a nightmare and this is just the beginning ……..

I apologise for going on and Thank you for reading this.

Sending love and hugs to everybody who reads this.

Anonymous
  • hi there, my mom has also recently been through something similar, she had to get a stoma bag (only for urine im not sure if there's a different name for them) due to the result of her previous cancers and what the treatment has done to her bowel. I too really struggled to see my mom in so much pain with it, she's always been good at hiding her pain but when she came home I finally realised she really was in agony. its not 3 months on and she feels better than ever, she can change her bag herself now even if she sometimes does get a bit frustrated with it, she's been off antibiotics properly for one of the first times in 16years and she's happy with the way she looks! I know its so so hard to see your mom like this at the moment and I really am sending loads of love, but im sure she will be back to her old self in no time! xxxxxx

  • Hi YouAreBeautiful, thank you for your message, sorry to hear about your mum, sending your mums hug.  Like you, it wasn’t till we got mum home we realised the extent of her pain.  She has been in so much time the pain killers and the oramorph don’t seem to touch it at times.  Only now she has a urine infection and a hernia.  Luckily our GP surgery have been brilliant since mums cancer diagnosis and it doesn’t matter what time I ring the surgery a GP will ring my mum back, so today she was prescribed MST, slow release morphine tablets so I’m hoping these will help.  Like your mum, my mum is also changing her stoma bag herself, she actually finds it quite easy which is good for someone who is 76 years old but can get frustrated too.  It’s just so unfair.  It’s great your mum is antibiotic free, 16 years is a long time, bless her.  I hope your mum continues to do well and send both you and her lots of love and hugs xxxxx

  • Well it’s 3 weeks since mum had her stoma bag fitted and she is still in a lot of pain.  As well as the stoma she has developed a hernia and what we thought was a urine infection as it stings every time she wees.  She had a course of antibiotics but her urine tested negative for a uti,  she is now taking something for cystitis but that appears to be making her stinging worse. She’s hardly eating and has just been put on fortisips, but she is managing really well changing the bag etc, it is just the pain.


    Mum had a phone call this week off the oncologist regarding her treatment.  They want to start the treatment in 3 weeks time and in the meantime mum has 5 clinic appointments to attend.  Mum has decided she does not want treatment because she cannot face all the trips to the hospital, the thought of losing her hair, she knows if they can shrink the tumour they will remove it but in time she may need her rectum removing plus she has a small tumour on one of her lungs, they can zap that with the chemo but in time she may lose a lung, mum is 76.  She rung the oncologists secretary yesterday  and told her she is not having treatment and to give it to someone more deserving (her words).  Us 3 girls are heart broken but it’s mums decision and we must abide by that.  Cry 

    sending hugs to everyone out there who is affected by this horrible disease xx

  • I've tried three times to message you and keep deleting because I don't know what to say. I have been diagnosed with pretty much the same, have three kids, one who is a cancer nurse. I feel quite chilled at the moment but it's very early days for me and I'm now waiting for a biopsy after having all the initial tests. I'm a bit scared but can't stop worrying about my kids who are 39, 37 and 35. They are in pieces too. Please send my love to your Mum as I begin my journey. I will keep you posted

  • Hi JVK, so sorry for not replying sooner, haven’t been online much the past few weeks due to me having a fall and my son was stabbed in the arm 3 weeks ago (his arm is on the mend and police have arrested someone), o