Stuck in hospital.....losing hope!!

My mum hit quite a few bumps along the way . Set backs and emergency admissions. But they took the time and sorted her out . 

I understand the nagging concern about the liver mets but it really does become a case of dealing with the most pressing need for a while . Can you refresh my mind with her liver mets situation . My mum had a significant spread one around five Cm by the time she started chemo , others report larger size by the time they are detected and chemo still did a great job . She had a three month watch and wait period without chemo but still responded when she went back on and got good shrinkage .

Its exhausting and draining in a whole new way but suddenly you can turn a corner and at last start to make progress . 

My mum here electrolytes knocked off and had to take a break . Totally dehydrated , confused and could not stand . She need admitted , some fluids , potassium and a rest before she could pick up again . What a scary time it was but she made it back to chemo and wellness.

take care of yourself too , even if it’s just sitting somewhere in the quite for half an hour .

Send your mum our love for a very speedy recovery .

Court 

Ahhh thankyou court....your mum has been through a horrible time too!  It's so hard watching your mum suffer and mine still has a long way to go. Mums mets are two operable liver lesions....should shrink with chemo but can be removed if needed. The trouble is, mum is mentally on the floor....and she has pretty much given up. She is a very strong lady, but this whole process has just broken her!! The hospital are doing everything to support her, and so am I. 

Well.....we are hoping that tomorrow is reversal day.....can you keep everything crossed!!!!!

Sending lots of love and best wishes to you and mum xx

They have both endured a lot and I will be thinking of her Tomorrow. Hopefully some good news .

Being operable is a great big positive with the liver so it sounds as though she can recover without too much worry . 

She needs time to gather her strength . Then hopefully she can face the next hurdle.

take care ,

 Court 

Due to the fact that my liver mets cannot be operated on, or Chemo etc. It’s still good that you can get treatment. I’m awaiting my blood tests and such to see if my mets have spread to other sites. I’m scared but acts the way it is for me. Good luck.

Thinking of you too.

Hope the tests are ok . How are you keeping just now ?

take care ,

Court 

I’d feel a lot better if I didn’t have to have a total of nearly 4 hours travel by bus, then over a hour of walking to visit my mother in her new care home. I missed the bus tonight due to the fact that my mum had made a decision last week to stay there for good but it’s too far out for my lack of stamina. She admitted to missing her hometown and such. I asked her what she wanted. I had to make it clear that after she said she was staying there, that I respected her decision. But on Saturday I told her that I can’t keep up with the travelling and that it was maybe better if I got out of her life. She started crying. But unfortunately as I’m terminally ill, how can anyone expect me to keep up a total of 6 hours of travelling? I don’t have car and the final part is each waya 45 minutes walk to and from he bus station. As I can’t keep up the commute, wouldn’t it be better if I stopped going? He is popular in the home and I already feel like she has a new family. I feel that she would be better off if she didn’t have me in her life. She can’t cope with my cancer, she has Parkinson’s. She has spent a lot of time in and out of hospital.  I have told her that when you love someone, sometimes you have to love them enough to let them go. Oh I don’t know. My heart is breaking. I love my mum but I feel in the way, feel obsolete. 

That is such a hard situation for you . Only a loving person would endure such a journey in the first place given your own health needs . But that is a very arduous journey to sustain given your own circumstances and I gather that if there was another way you would already be doing it . 

In lots of ways it’s a positive that she is so settled and well received. At least you don’t have to worry about that aspect . But sustaining that journey is going to become more of an issue for you and a very real and difficult conversation to have .

You can only do what you have the physical strength to do in life . After that it slips out with your ability to control it . Have you thought about speaking to Macmillan’s helpline staff . There may be grants to access transport for at least an occasional visit and that way you both can see each other although not as often as you would like . 0808 808 0000.

It is also really important to prioritise your own needs too . Your mum has people to care around her . She is safe and comfortable . Do you have support for yourself ? You sound as though your trying very hard . 

Take care ,

Court 

Jack

What a huge burden you both have to carry. I agree that the journey sounds awful and I am not surprised that you can't cope with it and it will only get worse as you get more ill. Having said that there must be a way that you can still keep in touch with each other over the miles. Are there any staff or residents at the home who could help with occasional virtual chats on the internet? Computers are amazing with how they allow people to chat on cameras. Even if you just talk on the phone every week it is better than cutting your Mum off completely, she will still worry about you. I can understand that you feel obsolete but she still needs you I am sure, and you probably need her as you face your limited future. There is good coming out of this, you won't have to worry so much about her welfare now that she has found somewhere that she feels happy and she will have support around her after you have gone. I know I am being blunt but I have recently found out I am incurable and one of my biggest worries is how my family will cope after I am gone. Another option that you could look into is whether there might be a charity with volunteer drivers that could drive you there once a month for example. 

You don't mention any other family, I hope that you have some support for yourself. If not try getting some while you are still well enough so that there is support there when you can't cope. Your GP, specialised nurse from the hospital or even the local hospice may have a social group or activities that may help. 

Nicky

Just one problem! My mum wasn’t happy in the home yesterday. She reckons she is missing her hometown. She is worried about not dying in her town. I’m not happy with her changing her mind. At the end of the day she expects me to keep up the visiting, she keeps saying I’ve got to keep coming, that she would be unhappy if I didn’t. She expects me every week. I really don’t think she has seriously thought thing through as of up to now she has had the best of both worlds. The home and me.  She has been been in and out of 7 or more care homes, one of them 5 times. She gets fed up of them. Yesterday as I was leaving, she admitting she was getting fed up of the place. I’ve had enough. She has had a deprivation of liberties order on her. So she cannot come home. I made that clear. But I have been honest, I can’t keep up the visiting she really expects. You will all hate me for this but if she hadn’t have said she is no longer certain as to remaining in that place, I resent her. I resent for the seventh or eighth time being put in this see saw situation. I asked her last night, can you see yourself being 100% happy here? She said no, it’s not my birthplace, it’s not home, I’m a long way from home. I warned her that she has to be 100% certain of staying there as she may not be allowed to leave once she has made that decision. I also told her that she has to be realistic as regards to what this is doing to me. I’m fed up of her changing her mind, one minute liking the homes and then wanting to live again with me, then getting fed up of me and clearing off with social services and then blaming the social services for blocking me from seeing her. I believed her until I contacted her solicitor, who rang her at the care home she was in May. The solicitor said my mum didn’t want anything to do with me. That continued for two months. Then suddenly her social worker got hold of me and told me she had been rushed into a city hospital. Her social worker did me the kindness of getting hold of the train times, writing them down etc. But my main concern was how ill was my mum. 

But those two months she didn’t want to see me or know me from my end, still hurts. She has done this her whole life. Blowing hot and cold over everything. So if my mum hadn’t have started all that off again last night, I could have coped with this situation better. I know one thing...I’m not going to ever have her home again, cannot cope with her. Also I’m fed up of her blowing hot and cold on me. I’m fed up of this situation. You may think me selfish but I wish I could walk away from this easy...but my heart won’t let me. I’m fed up of always running to my mum every time she clicks her fingers. I’m deeply unhappy, the care home is a good one. Especially medical wise. It would be a good place to die in. But if you’ve spent your whole life in one place and that one place can ever be home, how can you settle? I feel very much in between two hard rocks. I personally am not coping with this now. I want out. I dread my mum at the moment. I dread visiting her, as she is like a yo-yo. I feel no solid ground with her. I feel confusion, hurt and I’ll from it. I really wish she hadn’t started her I’m not sure I want to stay here speech. I’m not happy that two days ago I carried a 38 inches tv all that way. I’m not happy about the thought of re carrying it back! My mum has had the best of both worlds, the homes, her home and me. She has never known what it’s like if the choice is final as she knows she can swop and change her mind. I must treat this situation like a permanent one. And therefore make my mum see the care home choice completely on its own. No me! And no our home. While she continues to have it all, it’s going to make me ill. I want a break. I’ve been putting my mum first since I walked backed in her life in that city hospital when she hadn’t wanted anything to do with me from my end. Just wanting a list of things from her home and a am I all right through her social worker. I love my mum. Enough to let her go. 

Just my opinion , I don’t think your love for your mum is in question but right now you have to love yourself too . That’s not selfish it’s an acknowledgement of your health needs . Your mum is safe and well cared for . Her needs are met medically . It sounds like you need to draw her a boundary in terms of what your input is going to be . Right now I am more concerned about your health and wellness . 

Take care ,

 Court