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Where do we go from here?

10 Sep 2019 14:44

This is a bit long winded so bare with me, I’ll try and keep it as short as possible.

So basically, my Mum has been in hospital for a few weeks due to a spinal fracture. Whilst she was there, she was given a chest X-ray and was told there was a shadow on her lung. She was given a CT scan and was told that the shadow was a tumour and that they thought it had spread to her bones (hence the reason why she was in so much pain with the fracture). She was not given an actual diagnosis as they wanted to send her straight to a cancer centre for 5 fractions of palliative radiotherapy on her spine to help reduce the pressure it was having on her spinal cord (at this point, I should say she’s been immobile for almost 6 weeks).

Fast forward to this week, she has completed the last fraction of radiotherapy and from there was supposed to be going back to the original hospital for a proper diagnosis (EBUS/bronchoscopy or something along those lines) so then we would find out what the prognosis was and then aim to get her back home and in as much comfort as possible for how ever long she has left with us. However the last few days, my Mum has been shutting us out which is uncharacteristic of her. We all know it’s terminal so it’s not as if she has anything to tell us that we don’t already know, but the odd thing is, she called me earlier to say she wasn’t going back to hospital and that she’d spoken to someone from Marie Curie and that she was going to a hospice instead.

Now I know she is dying but I thought at this stage, it would be a diagnosis and palliative care set up but she’s talking about end of life care already. Have I missed something or is this her telling us she’s about to give up? I mean she’s not even been given a diagnosis yet!!

Where do we go from here?

11 Sep 2019 01:51 in response to BethB

Hi 

So sorry for what your going through - Mum could be trying to protect you , going to a hospice would take the strain of you all and she’d get 24 hour care , My Father didn’t want that but towards the end he thought he was a burden to us and asked to go into care - he was too I’ll to be moved at that point . We assured him he wasn’t a burden and when he went we were all there for him . 

Maybe talk to your Mum and ask why she’s chosen that route , Palliative care can go on for a long time , my fathers care was for several months . Regards the diagnosis where folk start to give up is something that my partners grandmother is going through - it’s a strange one as she will be fine one day then it all changes the next , her emotions must be all over the place which is maybe something that your Mum is feeling . Folk will go through the anger stage , disbelief , confusion on why its them that are ill , the why me phase , anger towards family and then the acceptance stages - it’s a roller coaster for you and her . 

Maybe when your visiting ask to see the medical team and just ask questions , you’ll find your answers of which some you may not like  . It’s a journey , an unpleasant one but we get through it and it helps us to understand just a fraction of how our loved ones are feeling .

You take care .

Where do we go from here?

11 Sep 2019 09:30 in response to H3

Hi H3,

Many thanks for your reply. I’m sorry to hear about your father, I guess being there for him at the end is probably the best thing you could have done. Yes I can understand why my Mum would be protecting us but it’s not as if we couldn’t care for her at home. Since she fractured her back earlier this year, both myself and my brother with some outside help, have been taking care of her needs. Even with the news that she has this tumour, her needs in the interim have not changed. If anything, we’re more prepared for looking after her as since she’s been in hospital, we’ve had her house adapted and her bedroom set up downstairs.

What has baffled me is that she’s deviated from the original plan and took it upon herself to make choices that I don’t think she needs to be making at this point, I mean she hasn’t even been diagnosed yet. The plan was for her to have the 5 fractions of radiotherapy and then go back to the original hospital for further tests which would give her and us a diagnosis and an idea of what time she has left and if there is any other palliative treatments she would benefit from in the mean time. Instead she’s took it up on herself to completely bypass this plan and go straight in to a hospice. 

Ive spoken to the consultant she is under at the cancer centre and she even said at this point and with little information to go on (seeing as she’s not had investigatory tests etc.) she wouldn’t be equipt to say what the prognosis was. Maybe my Mum just doesn’t want to know so has decided to cut the hospital out completely. I think once she’s moved to the hospice, we might get the bigger picture.

Thanks again for your reply.

Where do we go from here?

11 Sep 2019 10:08 in response to BethB

Hi there ..

Really sorry for your dilema .. but as a cancer lass my self, where we go and when should be down to us ..cancer takes away mos much control in our lives and feel like wer being taken where others want us to go .. 

Like your mum, I want a hospice .. I'd book a place now if I could .. I will not have my family look after me, when I can not look after myself .. that is my choice and I'm so lucky family support me all the way .. l know you want what you think is best .. but you know I listen to all views then make up my mind as to what I really want ... I know you sound like a wonderful caring daughter .. your mum must be very proud of you .. but all I'd say is find a way to really listen to her, without interrupting... really find out how and why she wants to do this .. and if she doesn't want to discuss it, tell her that's o.k you'll support her whatever ... that way your giving your mum back some control .. and you know she just may be right ..

Chrissie x 

Where do we go from here?

11 Sep 2019 11:19 in response to Chriss

Hi Chrissie,

 

Many thanks for your reply, I hope you are as well as you can be at this moment.

I have told my Mum that I am not here to change her mind but to support her in what lies ahead. What I didn’t want her doing is making choices by herself, it is bad enough that she’s miles away from her family at this cancer centre without feeling like she’s having to make choices on her own. She knows she doesn’t need my permission for anything but given the fact she’s not been diagnosed yet, I don’t want her jumping the gun and making choices that she doesn’t need to be making at this point.

I can totally agree with you about taking back control because I know she’s felt like she hasn’t been in control for a long time, even before she was hospitalised and they found the tumour. I can’t stress enough about how much I do listen to her. I practice mindfulness which includes being present mentally and physically when someone is talking so that everything is taken in without my own thoughts and opinions interrupting. By doing this, I have a fairly good idea what she wants and doesn’t want but this is why I’m baffled as to why she’s deviated from what was originally planned. But again, this is something I need to further understand and appreciate because at the end of the day, I’m on her side and I only want what is best for her.

Thanks again Chrissie and very best wishes to you x

Where do we go from here?

11 Sep 2019 17:29 in response to BethB

How amazing you sound ... well here's to finding middle ground and walking whatever path she is on together ... just a thought, the hospice wouldn't take her in without knowing more info ... good luck on the journey... always here if you want a chat ...  Chrissie x

Where do we go from here?

11 Sep 2019 20:54 in response to Chriss

Well I spoke to my Mum about the hospice and it seems I’ve got the wrong end of the stick. She still intends on having the tests etc. but is going to have everything done through the hospice instead of going back to stay in hospital. The way it has been explained to me is that Marie Curie are going to take over her day to day care, take control of her pain management and arrange her hospital appointments as an out patient and then once she armed with the diagnosis and knows the outlook from there, she aims to come home if she can for however long. 

I totally understand why she’s choosing to do it this way, as she had a real fear of being back in hospital again and as you said, it was like feeling she had no control whereas now she’s taking back control and doing it how she wants to. 

Thanks again Chrissie for your advice and guidance x