My mum has a Grade 3, potentially late stage cancer - why the delays with investigation/treatment?

[gaelicsheep]

Is it because there is no hope and they're focusing resources where there is? Basically the story is that she has an aggressive cancer of the uterus, carcinosarcoma. She had a total hysterectomy a few months back but the cancer recurred at the top of the vagina, biopsy results took 2 weeks after the surgery. A CT scan a couple of weeks later again revealed possible problems in the abdomen that needed a second opinion. Another week's wait, they are pretty certain it is spread to the abdomen. Now she has to wait two more weeks for a laparoscopy to confirm before they determine if she is to get radiotherapy or chemotherapy.

I make that 7 weeks at the very least from diagnosis of a recurrence to treatment. From my research, if there is spread to the abdominal wall I understand that makes this a Stage III cancer. It's bloody aggressive and bloody dangerous and it spreads fast. I can't understand why there are so many delays with getting investigations completed and treatment started. Can anyone please explain this to me? Thanks.

[MrsTwgtwf]

Really sorry to hear this, Gaelicsheep. I would ring the Macmillan helpline and talk it through - as many times as you need to.

There's a Macmillan microsite on MN - here:

www.mumsnet.com/microsites/macmillan-cancer-support

[gaelicsheep]

Thanks. I forgot (again) about the Macmillan microsite on here. I don't think I'm quite ready to call the helpline yet. I'm still kind of numb after they told me the results of the CT scan, last night I just wanted to cry and cry and yet I couldn't.

[MrsTwgtwf]

I do feel for you. I'm so sorry. Keep posting - that'll help. I'd also recommend Maggie's Centres for RL help if you've got one near you - there's one in Hammersmith, London, and several in Scotland. Numb is normal for now.

[MrsTwgtwf]

Also - this topic is a bit slow; you could always start an additional thread in another topic, eg General Health? I hope you manage to get some rest tonight, Gaelic.

[gaelicsheep]

That didn't seem particularly fruitful either when I posted a few weeks ago. just one kind person answering and another bump. Not to worry, I think I just need to steel myself to call the helpline. It feels so unreal just now. Thanks for the

[MrsTwgtwf]

Yes, I know how you feel. The other thing that I did in my state of unreality and numbness was to start a thread in Philosophy, Religion, etc - which was comforting, but I don't know if you are pro or con that approach iyswim.

[gaelicsheep]

I'm feeling rather con that approach just now it has to be said. I am more of the go and research it to find out the worst school of thinking. It is driving DH mad. Unfortunately though I live a way from my mum and I won't be able to be there much when (assuming) she embarks on chemo, so I want to prepare myself to have an idea what she's really going through when she plays it down. DH thinks I'm being morbid - I think I have a duty to inform myself. Does that make sense?

I have rather a lot going on in my life at the moment. I've already been questioning my job, needing to go away alot, being a f/t working mum etc. This is just making all those doubts snowball - you realise how precious time is. And it's so scary - my mum has no symptoms at all, she's perfectly well and yet this thing is growing inside her. It's like living in a parallel universe, it really is.

Anyhow I don't want to keep nattering on. Can I ask though, was it a family member or you who was/is ill?

[NormaSpoonOeufEggcher]

Gaelic. I can't offer much advice. But I would like to offer a hand to hold. I lost my mum 4 weeks ago. I understand the different perspective thing you talk about.

[gaelicsheep]

Thank you Norma. So sorry about your mum. xx

[MrsTwgtwf]

It was my mum first, and then my dad some years later. I had that thing you describe of wanting to have loads of info, and I found the Macmillan helpline nurses were prepared to go through every stage, on the phone, in great detail. And I could ask whatever questions I wanted. I also got all their booklets. I have to say that I did get too hung up on thinking that "something can still be done" when actually I needed to accept that palliative care was the only way forward, but in general being fully informed reduced my fear and feeling of helplessness. Particularly when they explained that it was normal for x to take x weeks to happen and so on. It gave me a feeling of control, instead of everything being out of control.

Parallel universe: yes.

The other people who might be able to help are the people on the Tamoxifen threads - of course they have been through it themselves. I know they are always keen to offer help.

[gaelicsheep]

Oh I'm so sorry MrsTygtwf. It is so kind of you and Norma to come and talk to me when it must be so painful to have to think about what you've been through. It's good to hear the Macmillan helpline is so good. At the moment I feel like I have no right to call as it's not me going through it and I don't want to waste their time, since there's a Macmillan nurse working with my mum and dad already. I just wish I was there, but then what could I do? I feel totally helpless. It also feels at the moment rather academic whether she actually survives this or not - I can't believe I even typed that. It's just that once you know (and I think we all do know) that she's facing chemo then that's the reality isn't it? It's here and it's happening. It's like I know it's the beginning of the end, whether the end is in 6 months or 4 years, it just feels inevitable somehow with a whole load of horrors to go through in the meantime. And I've an awful feeling that if my mum goes my dad won't be long after her, as he's not in good health himself.

Don't feel you need to answer my witterings btw. I'm just having trouble settling my brain to go to sleep.

[MrsTwgtwf]

I think they see their role very much as supporting relatives; they never made me feel in the least guilty about taking their time, and they were brilliant at understanding how I would be feeling at any stage. It is an incredibly difficult time, and it's important to accept whatever help is on offer. I did also find that friends were very sympathetic, and in fact with my dad, I had a close school playground friend whose dad was going through the same at the same time. We were a two-woman support group. At any cancer support centre you can meet other people going through the same thing, and that is comforting, especially when you have those thoughts that you can hardly put into words. At the same time you can be incredibly matter-of-fact with people going through the same thing - say things that you would not ever say under ordinary circumstances.

[gaelicsheep]

Can I ask a silly question? Did you tell your work what was happening? It's just what with everything that's going on at the moment, this body blow on top feels like the last straw. I don't feel my mind's on the job, I feel I've lost all the confidence I was gaining. I don't want them to think I'm just crap, but then I guess they my personal life isn't their concern. It's not a bereavement is it, just stuff I have to deal with.

[NormaSpoonOeufEggcher]

My situation was slightly different, in that my mum was in and out of hospital for about 3 weeks before she died, she had parkinsons and secondary cancers on her bones and lungs, but nothing that seemed immediately serious. When she did die it was quite quick and unexpected.

I did tell my work - I guess it depends what your workplace is like. My boss and I get on very well, and discuss personal stuff, and what is going on in our lives. It allows us to cover for each other when one of us is having a tough time. So he understood that I was worried about her, and cut me some slack.

[MrsTwgtwf]

I would definitely try to find someone at work who has an idea how debilitating this is - your gp could back you up. Your HR dept should definitely be very sympathetic if they are any good.

I was looking at Maggie's Centres again for another reason - here's a link:

www.maggiescentres.org/about/what_is_maggies.html

[NorthernLurker]

Op - I'm sorry for your situation.

A couple of points - when my bil received a terminal diagnosis I let my manager know straight away because I simply didn't know what would be needed from them. She was very sympathetic. You cannot possibly hold this all inside. It's a HUGE burden to carry.

Secondly - biopsy results do take a couple of weeks. That's inevitable. The other delays are scheduling issues I guess. Are you in touch with her doctor? you could express concern at the delays and see what they say. She should surely be at the top of a list for a theatre slot and you could offer to come in at very short notice if a slot comes up. I hope you get some better news soon.

[gaelicsheep]

Thanks all. I have spoken with my DPs tonight and I fear they are now in denial, which I guess is understandable but which I feel quite upsetting and a bit hard to deal with, other than just going along with it and taking the lead from them, which you have to don't you? Work today was utter shite and I had to go and cry somewhere more than once, barely did a shred of useful work all day, so I think I really am going to have to speak to someone. I think I should probably wait until we have been given the final results, prognosis and a treatment plan. The wait for all that feels unbearable right now. I would like to think my DPs are right to be positive, but I fear there is little to be positive about.

[NorthernLurker]

Gaelic - hope is important but it's possible to have hope even when a cure cannot be. If your mum is given a prognosis of a life limiting cancer then there is still a place for being positive and hoping. Because life is wonderful and complicated and painful and full of love and it can be all those things even when or because you're breaking your heart.
Sweetheart, one way or the other all our lives on earth will end. I believe in a good death. When I come to it I know what I'd want. That's not to say that you and your mum are at this point but if you are - be of good courage and live that time. Don't let it overwhelm you.
Talk to your work and hope.

[gaelicsheep]

Thanks Northern. It was a bad day today, but there are lots of other stresses going on too. Things can only get better. I'm glad it's the weekend!

[MrsTwgtwf]

You may have to live with their denial - it's only natural. Try to tell people around you what's going on. Hope you have a tolerable weekend. xxx As you say, things can only get better.

[gaelicsheep]

I am feeling much better now. She has her pre-op appointment early next week so things are moving thankfully. Thanks for kind thoughts. xx

[MrsTwgtwf]

[cb2ndtimer]

Hi, I just wanted to add a quick hello as I am going through a similar situation myself.
My Mum was diagnosed with sarcoma after a hysterectomy in November 2011. Scans showed it had spread to her pelvis and spine with small 'spots' on her lungs. She started chemo in January 2012 and after a second scan in June 2012 they stopped treatment as it was 'stable' Unfortunately a scan in December showed that the spots on her lungs had grown. She was given a different type of chemo which didn't work (growing on pelvis now) and has just started a 3rd type of chemo. My brother has just set his wedding date for this October and Mum is very positive that she will be there.
I know exactly what you mean about finding work difficult. I feel like I need to take some time out to look after my Mum now but really she is actually doing quite well and doesn't want fussing over. I am lucky that I live fairly close but don't want to smother her. I have a million and one questions about her treatment but her response is just that she will just do as they tell her and doesn't want to question anything (or ask about a prognosis). I feel like everything at work is pointless but have to put on a smile.
Sorry my post is not more positive - I just want to say that I know how you feel and please private message me if you want to talk more.