Our Family's Story

[AmandaJayne]

Hello. This is my first time posting, having visited this forum several times over the past year.

 

My lovely mam was diagnosed with this dreadful disease in August 2020 and the diagnosis has devastated us all. Having endured 18 gruelling months of chemotherapy,  it now looks as though mam's journey of battling this vile cancer is coming to an end. 

 

It's been such a horrendous couple of years for us all, coming to terms with a future without our lovely mam, being so painfully aware of our limited time together being further compounded by the Covid restrictions.  I know people talk about a 'living nightmare' but truly I feel as though this is what we're going through. 

 

I'm not sure what I really want out of sharing my experience here other than perhaps being a space where I can say how I'm feeling to people who are going through the same thing. I don't cry in front of my mam as I don't want her to be scared of leaving us all. 

 

I can see the end rapidly approaching,  mam now has a hospital bed downstairs and carers and the nurse visiting daily. Yesterday her GP discussed increasing her pain relief but she's reluctant as it makes her so sleepy.

 

 By the time her diagnosis was made, palliative care was the only option and because of Covid restrictions this has meant mam having to go through all of her chemotherapy, scans and consultations by herself.  Face to face meetings have been few and far between, most of her scan results were given via telephone. I feel this must have been such a lonely experience for her.

 

I'm mourning the future we've had taken away from us, mam's only 71, and have no idea of how it'll be when mam is no longer here.  

 

Thank you to whoever has taken the time to read this. I send my love to all of you going through this devastating experience.

[broju]

Hello AmandaJayne. My heart goes out to you. We too had nearly 2 years of a living nightmare much as you have described and for me it goes on. It's a truly awful disease for the patient to experience and the carer to support and witness. There will be a great number who will read your story and want to offer support but struggle to find the right words as I am doing.  Try to take care of yourself too. Xxxx

[Floofmom]

Hi AmandaJavne.  Thanks for sharing your story.  I am in a similar situation but my Mum couldn't have chemo.  We are at a similar point to you.  Feel free to express your feelings on here, there's no judgement, just support.  Sometimes it helps to be able to write stuff down and know that people here understand to some extent.  It's a hard journey.  My thoughts go out to you xx

[Fee4]

I’m so sad, my experience echos yours…..dad is really struggling……I’m managing to keep him hydrated, but food is almost impossible…..he’s tired and pain fully thin……I’m keeping him going and looking after him…..but this is awful for him, and awful for me…..I’m just exhausted and sad…….

[AmandaJayne]

Hi Fee4. I'm so sorry to read this. I wish that I could offer you some words of comfort. Watching a loved one suffer is the cruellest thing. Today my mam has been very short of breath and we've had the doctor out to her. They aren't taking her into hospital because her oxygen levels are good but have told her to double her oramorph to see if that helps.

At the moment my stepdad is taking on the majority of the caring, with myself and my sister visiting her everyday or taking her out when she's well enough.  Tonight we've had a discussion about taking turns to sleep downstairs with her as I suspect that some of her breathlessness is being driven by anxiety too. 

Take care of yourself. Sending you love xx

[AmandaJayne]

On 8/17/2022 at 9:13 PM, Floofmom said:

Hi AmandaJavne.  Thanks for sharing your story.  I am in a similar situation but my Mum couldn't have chemo.  We are at a similar point to you.  Feel free to express your feelings on here, there's no judgement, just support.  Sometimes it helps to be able to write stuff down and know that people here understand to some extent.  It's a hard journey.  My thoughts go out to you xx

Hi Floofmom. Thank you for your kind words. Not sure if you can see my update I've posted today, I'm not really familiar with how to use forums. I really see my mam going downhill rapidly and feeling so helpless is awful. I hope things are manageable for you. Take care of yourself xx

[Support Team]

Dear Ladies,

 

Sorry to hear these are such sad and emotional days for you at present. Please be so proud of all the wonderful care and love you are providing for your loved ones, that is so very important and so valuable above all else.  

 

I wondered if you are aware of some of the virtual support sessions available at PCUK, there is a regular 'Family, Friends & Carer's Cuppa' that may be something you would consider joining.  Please see the following link if you feel this might be something to consider for some additional support.

https://www.pancreaticcancer.org.uk/support-for-you/living-with-pancreatic-cancer-support-sessions/family-friends-and-carers-cuppa/

 

Thinking of you at this time.

 

Administrator

Pancreatic Cancer UK

[Floofmom]

21 hours ago, AmandaJayne said:

Hi Floofmom. Thank you for your kind words. Not sure if you can see my update I've posted today, I'm not really familiar with how to use forums. I really see my mam going downhill rapidly and feeling so helpless is awful. I hope things are manageable for you. Take care of yourself xx

Hi Amanda Jayne.  Sorry to hear about your Mum's breathlessness.  Is the extra oramorph helping?  My Mum was put onto anxiety meds because she is getting panicky with being breathless and the more panicky she gets the worse the breathlessness becomes.  The only thing is that the anxiety meds seem to knock her out so they are trying to find a dose that works well for her.  Despite having one collapsed lung and the other only working at 25 percent the oxygen levels in her blood are not as low as you would expect.  At one point they did remove fluid from her chest but they didn't know of it would help much.  The best thing she finds is to use a fan to create air movement.  I don't know if you have one but it's been really helpful.  I can't imagine how frightening it must be to feel like you are struggling to breathe.  Lots of the information out there about coping with breathlessness focusses on keeping calm and relaxed - easier said than done but definitely worth a try.  Hope she finds something to help x

[Emfems]

Thinking of you Amanda Jayne. My mum has recently been diagnosed and I have found just reading how other people are feeling and acknowledging how rubbish it all is has helped. 
sending you love. 

[Philip T]

On 8/17/2022 at 4:38 PM, AmandaJayne said:

Hello. This is my first time posting, having visited this forum several times over the past year.

 

My lovely mam was diagnosed with this dreadful disease in August 2020 and the diagnosis has devastated us all. Having endured 18 gruelling months of chemotherapy,  it now looks as though mam's journey of battling this vile cancer is coming to an end. 

 

It's been such a horrendous couple of years for us all, coming to terms with a future without our lovely mam, being so painfully aware of our limited time together being further compounded by the Covid restrictions.  I know people talk about a 'living nightmare' but truly I feel as though this is what we're going through. 

 

I'm not sure what I really want out of sharing my experience here other than perhaps being a space where I can say how I'm feeling to people who are going through the same thing. I don't cry in front of my mam as I don't want her to be scared of leaving us all. 

 

I can see the end rapidly approaching,  mam now has a hospital bed downstairs and carers and the nurse visiting daily. Yesterday her GP discussed increasing her pain relief but she's reluctant as it makes her so sleepy.

 

 By the time her diagnosis was made, palliative care was the only option and because of Covid restrictions this has meant mam having to go through all of her chemotherapy, scans and consultations by herself.  Face to face meetings have been few and far between, most of her scan results were given via telephone. I feel this must have been such a lonely experience for her.

 

I'm mourning the future we've had taken away from us, mam's only 71, and have no idea of how it'll be when mam is no longer here.  

 

Thank you to whoever has taken the time to read this. I send my love to all of you going through this devastating experience.

Hi AmandaJayne.

Your story has so many similarities to mine. I see it has been a few weeks since you posted so maybe the worst has happened (I sincerely hope not). My Mum first started feeling unwell on holiday with us in August 2020. The diagnosis was not made until Feb 2021, and then Mum passed aged 71 in June 2022 after a year of chemo. What with the additional covid restrictions, the whole period of time to her passing was a living nightmare. Nearly 4 months and I’m still struggling to process the loss of somebody who was at centre of our universe, and who was a sprightly person until the cancer. She did not complain about the pain, only regrets over her time being cut short. Mum declined rapidly from February this year. We support Dad (they were together for 55 years) but it is so hard going to the family home because of all the reminders of Mum. Thanks for sharing your story, maybe we can all provide some comfort to each other. All the best.