Help and advice please bringing dad home to die

Hi Sweetcheeks

Hello and welcome to the online community. I am so sorry to hear of your Dad's diagnosis and how unwell he is. When you asked for similar experiences I wonder if you mean from your Dad's diagnosis or as a supporter of people caring for him. There is other groups for carers only or supporting someone with incurable cancer if you click on the green writing it will take you there, though there are some carers in this group too which may come along too.

My story is very similar to your Dad's story. I too was diagnosed with a lung tumour in March 2018. I had 33 Radiotherapy sessions and 2.5 chemotherapy sessions. I wasn't supposed to have surgery but was offered it after December scans showed that it may be recurring. I had the operation February all ok. Scanned again 6 weeks later in April 2019 and they did head scan. I had been feeling unwell and started vomiting the weekend before and in hindsight was struggling. Mine were large, one in the front and one in the hindbrain on the other side.

They did offer surgery for mine about a week later but I had to have two separate surgeries and I was told I would have been in a bad way if not take out then in a few weeks or not wanting to get out of bed. I think this is because of my age that they offered such an aggressive form of treatment and that my body would be able to manage.

Sadly 6.5 weeks after the second surgery they had partially grown back already and I had two other brain tumours again and the lung tumour was also recurring. So mine to is very aggressive and spreads quickly. I was a Large cell Neuroendocrine tumour but they said it behaves like Small Cell lung cancer.

I was whisked off for full brain radiotherapy 4 weeks again. I had it but not really feeling much better. I will be scanned again soon and maybe chemotherapy again.

Anyway for you it is a large responsibility to take on and emotionally draining too. I do hope you have been offered the support you need. Has your Dad been put in touch with the Palliative care team? They provide all sorts of support like medications, nurses to home visit and assist with anything you need for his care. I met my nurse today and been in touch with the consultant since May. Also your GP should be able to provide support and help you need. Have you considered hospices if you do find it is too much for you both? Which there is no shame to say so, it is an a lot to take on and doesn't help that you are emotionally involved too.

There is also the Macmillan helpline here you can call for advice and areas of support they can point you too 0808 808 0000.

I do help that is of some help to you and you can reach to the right places for support.

Thank you so much for your response.  Our local hospice has no space at the moment but a macmillan nurse is coming to visit and the only other suppport is we have the numbers for the district nurse.   I am sorry to hear of your diagnosis this beast of Cancer is a horrible disease. 

Hi sweetcheeks, really sorry for where you find yourself and sorry to hear how how hard things have got for your dad. I cared for my mum who had s4 nsclc at the end of last year and will send you a friend request and I can pass on some thoughts around the practical side of things at home based on how things were for us, hope that might be of some help. 

Gina, sending all my best wishes to you, you're a really amazing person. Big hug. 

Take care and be kind to yourself -

Emma

Hi

So very sorry that you and your family are in this position.

Do you have an adult hospice within travelling distance that you could visit to discuss the home care issues with the nurses and carers? They are usually very good in providing advice and could probably give you more details of available support/contacts. They may also be willing to provide you with  telephone support.

There is help out there, even if it can seem difficult to locate.

Kegsy x