Some help please

Hi all,

I am looking from some advice really and also want to offer support for so many people who are affected by cancer.
I recently lost my dad and now am facing losing my mum to cancer. I am extremely close to my mum ( who has a terminal prognosis at 59) and we can discuss everything, but I worry that I am not doing enough for her at the moment.
She has secondary cancer in her bones, and some of the pressure in her spine is causing her to be increasingly paralysed in her legs and this paralysis is increasing at an alarming rate. The hospital have said that there is no more treatment they can give, so she wants to return back home (asap) but cant be released from hospital until they say. I want to do what is right for her, but I don’t know how she would cope at home and cant imagine myself what it would be like. Can anyone give me some words of advice? or if you are facing this situation yourself, what is the best course of action. I realise that everyone is individual in their own battle with this disease, but it makes me feel sooooooo helpless.

Thanks for any help
d.

Hi D,

Sorry about your Mum and losing your Dad.

The fact you speak to your Mum openly is very important. It’s so hard for our friends and family and we know that, the feeling of helplessness must be so hard but just having you there will mean much more than you can appreciate. Most of us don’t want to stay in hospital but sometimes the need to be somewhere we feel safe takes over and becomes more important, therefore the benefits of staying might outweigh those of going home for your Mum. None of us want our homes taken over by nurses etc. and worrying about what if x,y,z, happens while I’m at home but if she wants to go home they will be able to support that decision effectively - make sure all plans are in place before your Mum goes home, who will come in, how often, what to do if there’s a problem etc.

Good luck, it’s not easy but keep talking and being there for your Mum…it really is the most important thing you can do.

Love Twinkle xoxo

Dear 321uk

Welcome to the forums, I am sorry to read that you are having such a difficult time at the moment. I am sure you will continue to receive valuable support and advice from the forum users, in addition, please feel free to contact our freephone confidential helpline on 0808 800 6000 for further information, support and a ‘listening ear’. The helpline is open Monday to Friday 9am-5pm and Saturday 9am-2pm.

Kind regards
Joe
Moderator
Breast Cancer Care

Hi D,
It’s great your mum has such a lot of support from you. The hospital should be doing all they can to ensure she is safely discharged home as soon as possible if this is what she wants. Have you met with a hospital social worker yet? The s.w should be able to tell you what help your mum can get on discharge, and arrange carers if needed. The hospital occupational therapists can arrange equipment your mum might need etc. District nurses can also give lots of support.
You are not helpless, and can ensure that you know exactly what is being planned by talking to the ward nurses -they should have a discharge plan, and be actively consulting your mum and family on what she wants and the support you all need. Sometimes a meeting is arranged with the different professionals involved to ensure everybody knows what is needed.

Please let us know how you get on,
Best wishes,
India

Hi
I am so sorry about your Mum, I am the same age as her with bone mets although mine are not so bad. I spoke to my GP about my worries about care etc, and he asked if I would like to be put in touch with Hospice Care, this is similar to Macmillan. Some one comes to talk to you and your family in fact anyone who is touched by this maybe close friend. She told me that carers can be arranged, equipment to help with bathing etc also money wise what benefit you can claim. Maybe your Mum and you can talk about this , I am sure they will help her with her decisions and you will feel a lot calmer. I think these wonderful people are all called different things as India (above) says social worker, mine is hospice care and others its Macmillan… whatever they are called they are brilliant, nothing is too silly or serious to ask.

Best of luck

Sorry to hear about your mum - it sounds like a stressful time for both of you at the moment.

As others have said, District nurses, macmillan nurses, OT’s, GP’s, everyone is there to help you as much as they can. I am in a similar boat to you, my mum has extensive bone and liver mets and as an only child it can be hard to cope from time to time. I can honestly say that the help from our hospice nurse has been outstanding and she has allowed me to focus on making mums final weeks here as comfortable as possible by liasing with the doctor etc. Don’t be afraid to ask and make use of the support on this site. I couldn’t have coped without it.

Keith

My twin brother died some 12 yrs ago of an inoperable brain tumour, and his local services in Berkshire were brilliant. His GP came to visit every day during his last weeks at home (where he died) but arrangements were in place for him to go into a hospice if needed. I think there is a lot of support out in the community, and it is often just a case of knowing whom to ask. I would start with your Mum’s GP or his/her surgery nurse - I have found my GP’s nurse very clued up about my doing self injected chemo each week and is always asking if there is any support I need.
I think you may be surprised at just how much help there is for someone in a terminal situation. Hope you get some help soon.
Take care of yourself too.
Liz.

Hi D, l am in a similar position to your mum. l am 48 yrs old and have lost the use of my legs due to tumours on my spine. l will not recover the use of my legs. As l have a 11 year old daughter at home l am keen to get home . As already mentioned you should have a Macmillan nurse, they are a great source of information. When they think you mum is fit to leave hosp an occupational therapist will visit her home to see what needs to be done to make it habitable for her. She will also be allocated a social worker who will arrange a care package. l guess the difficulty for you is if she needs 24 hour care. l am lucky as l have my husband for during the night. l hope your mum gets all the support she needs.
love jacqui xxx

Thank you all for your comments - it has helped. She is still in hospital but hoping to get her moved into a hospice and see what happens from there.

Best wishes to you all

d xxx