Dealing with the next chapter.

[LewLew19]

It’s been a week since we found out that mums treatment wasn’t working. She made the decision that she wouldn’t try a fourth option as it could prove more damaging, especially as she’s feeling relatively well.

She’s got slight breathlessness, nothing too bad just noticeable if she walks far or talks for long periods. Her cough is slight but there. We’re all terrified of what’s to come, yet there is some relief that she’s no longer on a treatment, torturing herself in vain with little hope that it will make much difference. I guess even if it extended life by a few weeks, at what cost, the last chemo made her feel awful and she suffered awful anxiety during the process. The doctor said another treatment could wipe her immune system completely, any infection could put her in hospital and 4th line treatments are very unlikely to make much difference.

The palliative care team will be in touch to let mum know the support they offer.

It’s a really odd time, she’s trying to live normally but now it feels like we’re on borrowed time. The doctor said mum could survive ‘up to a year’ she was shocked at how well mum looked. No one has a crystal ball.

I really hope we come to terms with what’s happening and so can slightly relax, I feel so on edge constantly thinking about it, worrying, not sleeping, I’m not sure I can go on for a year (or hopefully longer) feeling like this! Dealing with mum having cancer was one thing, dealing with the prospect that she has limited time is a completely different feeling. I had hope before, hope for treatment, now I just feel a bit empty.

Anyways, not sure if anyone feels the same or is in similar situation.

That being said, my mum did find a treatment that worked for a time, 8 months of immunotherapy at only a 3% pdl level, so anyone reading this never give up hope! My mums is 16 months since diagnosis of stage 4 and I’d compare her condition to be similar now to what it was at diagnosis!

Thanks

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear LewLew19

No one can know for sure timelines and so many have went past the doctors expectations. It is easy to say, but try not to let your anxiety and worry rob you of precious time you have with your Mum and perhaps look at it as an opportunity to have the best year yet with her and maybe beyond.

The palliative care team are wonderful support for both your Mum and the family, they will be able to advise and provide information . It is also good to have a contact person to speak to if you wish to discuss anything at anytime.

It is great for your Mum that she feels well at the moment and has a reasonable quality of life.

You are right in that you cannot continue to live in this anxiety for a year or more, and although no one can change the situation, there are things that can help you cope and take that edge off you that you feel every day, you may wish to consider getting some help to manage your anxiety, either through your GP or there are lots of advice on Anxiety UK website:

anxietyuk.org.uk/ and their helpline number is 03444 775 774

Sometimes, after the initial shock of no further treatment and feel you are on borrowed time, the intensity of the emotion does ease and for some keeping busy with distractions helps.

Thank you for encouraging others in that your Mum is 16 months since her stage 4 diagnosis and doing well at the moment.

Be kind to yourself and if you wish to discuss anything you can either email us at [e-mail] or call our freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

[LewLew19 in reply to RoyCastleHelpline]

Thanks for your kind words. Yes, you’re right let’s not it steal more time from us! Your mention of an intense situation perfectly describes the feeling.

I just spoke to mum, we’re going to carve pumpkins today to decorate the house for Halloween. I guess the initial shock will subside I just need to take each day as it comes and not think too much about the future for the time being.

I used to be terrified of reading posts like these when mum was in treatment, treatment has come such a long way, I’m sure my mum has benefited in time, at least 8 months and the last chemo did improve her cough, so never give up!

Thanks again for the kind words and advice.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to LewLew19]

You are welcome and hope you truly have a lovely day with the pumpkins and with lots of laughs, your Mum is lucky to have you.

Take good care of yourself and am sure with time the intensity of the emotion that overwhelms you will get a little easier and perhaps more manageable.

All the very best

The Roy Castle Support Team

[Mistyglo]

I’m unsure what’s happened to my posts on here 🥲 this is the same situation we are in now with mum xx I’m soo soo sorry to hear about your mum and can only begin to imagine ! I’ve read back all your posts and really sorry I have not seen them to help with advice or even to reassure you snd your family your not the only ones in pain! Life I’m sure for you and all of us will never be the same again which is completely devastating but take some time , time will hopefully one day help and lock your mum and find memories in your heart xxxxxx take care xxxxx

[LewLew19 in reply to Mistyglo]

Thank you for your kind words. Sorry to hear you’re on the journey but I can say the thought of it all was way worse, she really was at peace, no more fighting each day. She just went for a nap and never awoke. I really hope the journey for you is as kind as it can be. It’s rough, there’s dark days for us to come for sure, but I’ll remember mum for what she was before cancer came along. If you want to message me in private Im happy to share more information on mums care and any advice I can give xxx

[Mistyglo in reply to LewLew19]

That’s very kind of you huni and thanks for your words too they mean a lot and will bear them in mind xx