To worry that my mums cancer is getting worse and time may now be running out

(28 Posts)
LivinLaVidaLoki Wed 08-Jun-16 14:06:29

My mum was diagnosed with advanced stage (stage 4) non small cell lung cancer last year (August) and was offered palliative chemo.

She had a round of chemotherapy which didnt work, she then tried another round of chemotherapy, which also didnt work.

She was told that as the chemo hadnt worked she would start a new kind of treatment - immunotherapy and that would start within a week. This was at the end of March and still hasn't started.

Up until the end of the last lot of chemo she always seemed so well, you would never have known how ill she was, but at the last lot of chemo it really started to take its toll on her.

Now, between her last two doses of chemo she had no treatment for about 3-4 weeks and the cancer spread, it has now been over 2 months and she is in pain, she struggles to breathe sometimes and on some days her cough can be unbearable.

I have tried to get her to call her consultant but she says that they have told her that they cant do anything for her (which she is right, as far as her condition goes there isnt anything they can do, but surely they can help with the pain), so I tried to call them but they wont speak to me about her.

Its just such a shock that she has gone from being ok to actually being ill, really ill. I am worried that the cancer has spread and she is getting worse, I also heard that once it starts to take over, actually I cant even think of that.

She has even said that up until now she has been a fighter but if this new treatment doesnt pan out then she is just going to let nature take its course. I am terrified, I know I have to be there and support her whatever she decides, and I will, but I have this nagging feeling in the pit of my stomach that by the time they get to start this treatment (they wanted more tests so she had a biopsy last week), it will be to late. I have this awful awful feeling (that I cant bring myself to say out loud), that we are running out of time.

Welshmaenad Wed 08-Jun-16 14:15:12

I am so very sorry about your mum.

I'm not an expert or s doctor so I don't want to comment on her prognosis but having lost my own mum to pancreatic cancer two years ago I know how frightening it is to see your mum looking ill and weak and...well, like a cancer patient. I think we see our mums as invincible even when we're adults and evidence to the contrary is terrifying.

Is your mum getting adequate pain relief? Do you have the support of a Macmillan or Marie Curie nurse? Making sure she us comfortable would be my first port of call, maybe getting the GP out for a home visit if she's not feeling up to going to the surgery.

flowers for you. This is hard. Be kind to yourself. You are welcome to PM me if you have any q's about my mums story.

Jelliedeels Wed 08-Jun-16 14:17:26

All I can say is tell her how much you love her, make sure you have said everything you want too.

Topseyt Wed 08-Jun-16 14:17:59

What a horrible situation to be in.

If she won't go to the consultant then would she go to her GP about the pain, taking you in with her so that you are both fully in the picture?

I remember my MIL going through this, although she had small cell carcinoma. It makes you feel powerless.

I hope you find good pain management soon.

ElspethFlashman Wed 08-Jun-16 14:22:40

Yeah, at this stage she needs better palliative care. A community nurse would be able to help - in our family it was a nurse from the local Hospice team who came out to visit us at home to tweak the meds and keep on top of it. We ended up having a subcutaneous pump with a lovely cocktail of different meds in it for different things, going 24/7 and the nurse came every day to refresh it. Hugely helpful and reassuring.

Sgoinneal Wed 08-Jun-16 14:22:57

I am so sorry. It's impossible to know any prognosis without medical notes - but you will know her and whether she is worsening too.
I lost my dad to cancer not that long ago and the decline is almost unbearable to watch, so I feel for what you are going through. The best you can do is give her your unconditional love, support and time as best you can. You won't regret a moment you spend with her. Tell her everything you need to tell her.

The pp is right, pain management is key. flowers for you.

Pineapplemilkshake Wed 08-Jun-16 14:25:42

How awful, I'm sorry about what you are going through. I would second asking her GP for an urgent palliative care referral. Her GP should be able to prescribe any pain relief that is needed, but the palliative care team are fab for general support and follow up, as well as specialist advice, should other symptoms develop.

Birdsgottafly Wed 08-Jun-16 14:30:27

There's lots that they can do for the pain and to a degree, her breathlessness, but she's got to want to access it.

You need a calm conversation about it.

She probably is entering the last stages. My Mum died of lung Cancer in September and because she had seemed so well for so long, it was still hard to deal with and face upto.

You can contact Marie Currie/Macmillan and Carer groups, if you need support, without your Mums permission.

It probably does seem as though "it'll be to late", but she's come to the end of her treatment options.

She's got the choice of how she manages her symptoms. My Mum chose to not continue and accepted a sedative after being admitted for breathlessness, which helped her peacefully go.

Thymeout Wed 08-Jun-16 14:38:08

They can't cure her, but it sounds as if they are still trying to treat her if she had a biopsy last week. There is a chance that they will be able to find something that will stabilise or reduce the tumours and consequent pain and give her more time.

When does she get the results of the biopsy?

Has she been given a Macmillan nurse or is there a CNS working with her consultant? She should be able to contact them about pain relief until she sees her consultant.

So sorry you are in this position. All you can do, really, is support her in whatever choice she makes, and perhaps when her pain is relieved she will cope better with the thought of more treatment.

LivinLaVidaLoki Tue 14-Jun-16 13:41:49

Well, she was admitted to hospital on Saturday, she has an infection, her breathing was terrible and her feet and legs had swollen up. She has had two have 2 units of blood and is now on oxygen, IV antibiotics and is having further tests.

She was admitted on Saturday, and randomly since about 8am today I have just randomly started crying. WTF is wrong with me!

TheBouquets Tue 14-Jun-16 13:47:27

I know you were so worried about your Mum and her illness. I think the bursting into tears could be relief that she is now in the right place to get some help with her symptoms. I always worried about being good enough to care for someone who was very ill and I had it in my mind that the hospital could do better than me. You can step down for just now from trying to care and help to being the loving daughter that you so obviously are.

AppleSetsSail Tue 14-Jun-16 13:49:42

flowers

Please call Macmillan ASAP.

gonetoseeamanaboutadog Tue 14-Jun-16 13:50:38

I have been there too, OP. It's so hard. I would really make the most of the time you have. Don't spend it trying to get more time at any cost. Just be together.

SmellyTelly Tue 14-Jun-16 13:52:19

My mum died suddenly and unexpected so please just do everything and say anything you ever wanted to as you have a chance, she is still alive.

LivinLaVidaLoki Tue 14-Jun-16 14:04:25

Thank you.

I think its just because I live so far away and I worry about her so much, so basically all of my spare time, weekends etc are taken up going down to see her, most of my other family are useless/unwilling to help and I just feel exhausted.

I miss having normal weekends with my DH and son and having her come to stay for odd weekends and going out, and I cant shake this feeling that this could be getting toward the end, I could be losing my mother.

I know thats ridiculous, but I cant shake it.

SpudTato Tue 14-Jun-16 14:14:45

My mother died of this.
Call Macmillan or see your GP for urgent palliative care referral.
Make sure you say everything you need to your mum flowers

LivinLaVidaLoki Tue 14-Jun-16 20:19:24

Well, they now suspect she may have a clot so she has had a scan to check for that today.

BeingHuman Tue 14-Jun-16 20:23:19

flowers sorry to hear about your mum, I don't know much about cancer and the processes medically. But they should be helping her manage the pain.

Stopyourhavering Tue 14-Jun-16 20:41:19

the hospital palliative care team should be involved with her pain management- see if you can speak to them or her lung specialist nurse- where in the UK are you?

groovejet Tue 14-Jun-16 21:03:32

Livin, I remember you from the supporting family members thread, I am so sorry that things have progressed.

Can only echo the other suggestions of either calling Macmillan or speaking to her GP and ask about community nurse visits, both can offer such a big support.

Wolpertinger Tue 14-Jun-16 21:06:30

While she is in hospital she needs to see the hospital palliative care team WITHOUT FAIL - ask the ward nurses to arrange this.

gunther73 Tue 14-Jun-16 22:15:07

Call Macmillan, and get in touch with your mother's oncologist.

cbigs Tue 14-Jun-16 22:23:23

This is so difficult op , thinking about you . flowers

PrancingQueen Tue 14-Jun-16 22:33:01

Hand holding OP.
My mum is heading towards end stage liver cancer. It's shit.
It's so confusing to know what to do, and although a referral was made to the hospice last Monday they've still not been in touch.

Thankfully my mum isn't in pain but she's so weak, has suddenly got frail and has no appetite.

Agree with posters above - the hospital should have a palliative team who can help your poor mum now.
flowers

helly29 Tue 14-Jun-16 22:52:50

Definitely get the palliative care team involved if your mum is OK with it - they can help with symptoms, emotional and psychological support and helping people device what it important to them in the time they have. It doesn't mean she can't have active oncology treatment that may give her more time if she has that option - it works alongside the oncology team.
Sorry you're going through this - I lost my mum to cancer a few years ago and it's shit and unfair x

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