Can't cope

Hi darling34 

How are you and your mum?   I hope your mum has improved from the other day.    I see from the thread you have been in touch with the palliative care team I’m glad you are getting the support you and your mum deserve.   Well  meeting went ok today but my mum is now to have a bone biopsy done at another hospital as they are not sure if it’s just  lung cancer they are dealing with or lung snd breast cancer so doing the biopsy on the bone mets in her pelvis.  So waiting again but I suppose they are being thorough because of the breast cancer.   My a nervous wreck sitting in they waiting roomsI hate them!!  

Hi reeb

How are you & your mum?   Did the op go ok?  That’s good you are organised and have got everything set up for her coming home.    I hope your mum will be a lot more comfortable after she recovers from surgery.   Today was ok but not what I was expecting another biopsy to be done in her bone met as they are not sure if the mets are from the lung cancer or previous breast cancer.   They are being thorough at least.  So we will need to wait in appt but the consultant did say she would push it through as quickly as she could.   As I just worry what’s growing!     The lesion on lung is defo. Lung cancer but they don’t have full results back as to what mutation it is as My mum has never smoked.   Anyway step by step.  

Bless you, Darling34... 

Glad you have managed to get what you need out of the palliative care team for today.  But what you need with change over time - so don't be afraid to keep asking questions or telling them what you are worried about.  I was continually amazed at how often I coped with things for a few days because I knew there was nothing to be done about it, only for someone to say... "well you need this equipment", or "have you thought about doing it this way", or simply "don't worry about that - we have three options for sorting that if it happens".  I'm a broken record - but I think it helps to keep being reminded that you just need to keep talking.

Yep... it's amazing how much you learn as a full time carer that you never wanted to learn in the first place.  It is really weird now that I have all these additional skills and knowledge and nowhere to use them.  Sounds like you are doing amazingly.

The end is very hard to judge - and that brings its own set of emotions and confusion.  I was convinced Fi had a couple of weeks left for the last three months of her life.  But she was relatively young and healthy and she just kept going.  The clues, really, were when she stopped eating, started sleeping the whole time, and then stopped drinking.  And - I can't pretend - the last couple of weeks was really tough on me.  Not so much on Fi, I think.  The nurses kept reminding me that because she so unwell wasn't really experiencing it the way I was.  The trick was only to keep her meds at the right level so she wasn't in pain and wasn't agitated.

In terms of how you will cope afterwards... I used to have the same anxiety.  And, in a way, I think you are right about not processing it while you are going through it.  The good news for me and my kids and mother in law, at least, is that because we were so involved in Fi's last days, we had already started to grieve.  I think that is a small advantage over a sudden unexpected death.  I cried plenty before she died and I cried plenty in the immediate aftermath - but it is mostly about how unfair the last few months were on her.  You are absolutely right... busyness is a strong anaesthetic - but it never made anyone better.  I have definitely had to face things down in the last few weeks that I have just not had time to think of while Fi was still alive.  But it was easier than I thought it would be.  Partly because I know that (because of all the help and support I had, because we have an NHS and social care system, because I have wonderful family and friends, we were able to do right by Fi and look after her in the best way possible. The disease dealt her a pretty crappy hand - but we played the cards as best we could and I take some satisfaction from that.  From your messages, I believe you will be able to say the same.  So... "Sufficient for each day is its own trouble" - don't worry now about how you will cope later.  Focus on doing your best now (as I know you are) and that will be the thing that helps you to cope later on.  And that includes looking after yourself and making sure you get the help you need.

Well done... keep going!

Hi I was thinking about u all day today. My mum is actually doing ok today out of pain at last so that's amazing. Thank you for asking. I'm so glad u finally got to see someone is there a plan for the lung cancer and possible breast cancer or have they not got that far how can they not just tell from a breast scan for the cancer. It's always more waiting isnt it and it feels like the longest wait ever doesn't it.

Hi Pete, thank you for being so honest with me. I say exactly the same thing we been dealt a shitty hand. And I'm so angry that this is happening to her iv told her if she had died from old age it's natural it's more acceptable but to die and suffer from this awful thing is so much worse it does feel like I'm grieving while she is here and the second part will come. I try not to think to much but every moment now becomes a thought of this could be the last. my mom had a period of not eating drinking and just sleeping the weekend but seems to have come out of it now we have the pain under control. I'm hurt more for her than me. Now we have the support they have been great and the GP has been great to so I'm extremely greatfull to them. I most definitely have learnt skills I never wanted to learn. I'm glad you and your family are close and getting through this together thank you for telling me your story and your after story it helps me take some comfort in this awful situation I felt so alone at the start of this and some times I still do as nobody else around me has had to do this but hearing people's very personal experience doesn't make me feel so alone 

Hi aw thank you darling34.   I’m so glad  they hsve sorted out your mum’s pain relief and she is more comfortable.      Well there is nothing on the mammogram they did so thats why they are taking a biopsy of the bone to see if it’s either breast tissue or lung tissue.   It just another wait is’int it.   I just feel my head is going explode!   

Hi there morning, I see I wondered why they didn't know with the brest cancer. Hopefully you won't have to much of a wait for the tests. Take a few days just to process the information every time we would go to a doctors appointment it would hit me for six so take time everyday u will feel different. Xx

Hi Pete,

Thank you for jumping in on the thread. I'm so sorry to hear you've been through all of this as well although, it does sound like you managed to do right by Fi until the very end and I am so glad you got all of the support and assistance you needed to help do that and I hope you continue to get any support you may need.

I am more than happy to continue caring for my mum the way I am at home but sometimes I worry it isn't enough and that she needs proper carers because there are certain things I cannot do for her and if something isn't quite right they will pick up on it immediately whereas I'm struggling sometimes, wondering "is this normal or do I call someone" "who do I call?" Etc.

She has an amazing Macmillan nurse who I call often for support and advice and she is very aware as are my mums consultants and GP of my mum's health and circumstances but I often feel as though more could be done but nobody offers anything and I struggle to know what exactly could be done or what to ask for because I have been in the mindset that they can see her and how she is struggling so if there was more that could be done surely they would advise me or action it but actually reading some of these replies and threads I'm realising that isn't quite the case and you do almost have to be demanding.

I've had a look into our local Hospice after reading your message and it seems a medical professional needs to make the referral for this one so I will speak to mum's Macmillan nurse to see if she can do this for us and get the ball rolling.

I will definitely buy that book. Just before mum was admitted to the hospital Friday, I felt like it was the end. I had prepared myself for it because it really felt like it. She hadn't been eating or drinking except when taking her meds and had been sleeping the days and nights away. She had no concept of day or night and then she started talking gibberish which was really worrying but since being in the hospital it has made me realise actually it's not quite the end.

Thank you again for sharing and for the information, it really does mean a lot.

I really hope you're doing okay x

Hello,

Mum didn't have the op, long story but she is okay. Pain meds are being reassessed and the physiotherapist is going to see her today to see what mobility support she needs. 

Oh god, another curve ball. Fingers crossed the biopsy brings back some results and they can build a plan from there and I remember when my mum had a couple of biopsies (bone and then she had an EBUS to get a sample of the lung) the results didn't take too long but all of the waiting is just excruciating because you feel like the longer you wait the worse it will be but like you say step by step.

Hope you're both okay xx

Hey Reeb,

I recognise all the feelings you are talking about.  I felt multiple times that I was inadequate to care for Fi - that she needed to be with people who had ten years of nursing experience and, for example, knew how and when to re-position her in the bed.  And there were definitely a few occasions where someone with more experience would have known better what to do.  On the other hand, I knew Fi better than anyone, and I was probably more present than any medical professional would be in a hospital or hospice.  The formula we came up with worked for Fi.  I was the eyes and hands - they were there on the end of the phone to advise and would typically come out within a couple of hours if I needed her checked over.  I believe that our hospice is a particularly good one - so "your mileage may vary".  And to be honest... Fi had a brain tumour - there were no complicated wounds to look after or anything like that - it maybe that for someone with different needs a hospice surrounded by nurses is a much better environment.

So - if you can start talking with the hospice, I think that a good start.  The other thing that really helped me was a referral to social care to get carers in.  In our case this was facilitated by the hospice, but I'm sure your Macmillan nurse could support this and would know if it is appropriate.  It was also fully funded - I have no idea what are the criteria for that.  This started with one visit a day and, as she deteriorated, ramped up.  I couldn't have coped without them towards the end - and they were a mine of information also.  If you don't already have carers coming in then it would be worth a chat about when that will be appropriate.

Clearly I can only talk about my own experience.  It may be that things are very different where you live, or because of some subtlety in the way that funding is allocated or something weird.  I hope that you can access the support that you need.

Please keep looking after yourself...

Pete