Welcome to Cancer Chat, kmar99.

I'm so sorry to hear about your mum. What a difficult time this must be for you both and it is only understandable that you are concerned, but you came to the right place, as talking to others who can relate to our experiences does help.

Hopefully some of our lovely members will be along very shortly to share their experiences with you and give advice but in the meantime, if you feel like asking these questions you have to someone medically trained, our team of cancer nurses will be happy to take your call. They are available on this number 0808 800 4040, Monday - Friday, between 9 a.m - 5 p.m.

Stay strong,  kmar99.

Best wishes to you and your mum.

Renata, Cancer Chat Moderator

Thank you for taking the time to respond to my post, I really do appreciate it and will ring to speak to one of the medically trained nurses, thanks for the link.

i am saddened to add that things have changed since my post.  My mom took a fall in her bedroom early on Monday morning, fortunately, I found her but not until the afternoon.  She had been lying on the floor for a long time so not sure what damage had been done.  Fortunately her heating was on so the house was warm but she only had her nightclothes on.  She was unable to get up to make contact with anyone for help.  We had thought that she had had a mild stroke due to various telltale symptoms but now I am convinced that she has had a stroke and possibly even another one. She was hospitalised late on Monday night and appears to have lost the use of both her hands.  I cannot understand why they still have not carried out a CT scan on her brain despite being told on a number of occasions about my fears.  The different wards do not seem to be communicating with each other or they can’t be bothered to read the notes.  The ward she is currently on told me they were planning a CT scan for the confusion she appears to have rather than the lack of use of her hands, but if her stats aren’t good they will postpone it!  I can’t understand this surely it should be a priority regardless of her stats!  I also can’t understand why they haven’t done X-rays on her hands and arms as she fell!  She may have fractures that need to be treated.  Her fingers are twisted and she can’t open up her hands or move her fingers!

i am worried that they are not looking at the right things.  I am off to the hospital to try and catch the doctor on his rounds so I can get some answers despite no sleep and feeling exhausted.  My faith in the NHS at the moment is at an all time low.

So after supporting my mother and getting her through 6 rounds of chemotherapy, 10 sessions of Radiotherapy I have now found out following her fall on Monday and various tests being carried out that she now has secondary cancer to the brain which is untreatable.  My mother is 79 years of age and was first diagnosed on January 13th 2017.  The lesions in the brain are in the cerebellum area of the brain which apparently is really hard to get tumors in and difficult to treat!  I have met with her Oncologist today who has said that no more treatment can be given to her and that her time is limited!  They are trying her on steroids to reduce any inflammation and reduce any symptoms she may have but this is not ongoing treatment and the dosage will need to be reduced!

The ward in the hospital she is being treated in is a general ward to which she was admitted intially for the fall rather than her illness.  As she is unable to move or use either of her hands she is bed bound when four days ago, she could function normally, although she was experienced loss of balance and minor falls.  We have been told that we now need to consider a nursing home or hospice for her.  How do I break that news to her, after being independent for all these years?  How do I tell her that she cannot go back to her own home that she has lived in for over 50 years?

I am also not very happy with the care she is receiving at the hospital.  As she is unable to use her hands she cannot do anything for herself, she cannot feed herself, hold a cup, even pick up a tissue to blow her nose, wipe her mouth etc.  The nurses try their best, but they do not have time to feed he properly, my mom cannot even press the button to sound the alarm that she needs assistance!  I can literally see her deteriroating before my very eyes.  She is not eating as there is no one available to be able to spend time and make sure she is eating her meals.  We have tried taking in various food for her but she refuses it.  I can't see her lasting that long if she carries on the way she is.

Can I request that she is moved to a different hospital which is closer to home?  Who can I go to for help.  I am unable to care for her full time myself and a care package in her own home would not be sufficient for her needs.

I am totally heartbroken, devasted and worn out.  I think I would like to know how much time we have left with her as we have been told that it is time limited but I am afraid to ask the question because I am afraid of the answer.  Also, I do not want my mother to be told, especially if we are talking a short time period as I know that my mother would not cope, she worries about insignificant things anyway and think that she would totally give up on life if she knew the facts.  I also know that it is very difficutl to put a timeframe on someone's life so it can never be totally accurate but an idea on what to expect as time goes by might help.  If there is anyone on here who has had or is going through a similar experience I would really appreciate any advice you may be able to offer.

What a terrible time for you.   There is such a demand for hospital beds these days that I suspect your mum's situation is not uncommon.  I hope that someone reading this will be able to give you some first-hand experience of MacMillan nurses caring for someone who has your mum's problems.  They  may be able to help nurse her at home.  I have  known them do this for someone I knew but he did not need as much help as your mother may do.  It is certainly worth giving them a ring; their Freefone number is 0808 808 0000 and I think their advice would be invaluable.  Best wishes.

Hi

Thank you for replying to my post.  So things have stepped up a notch since then.  We met with the Oncologist to get results on a MRI scan.  We voiced our concerns regarding the care that my mom is receiving and will be making a formal complaint tomorrow which will have to be investigated.

During our conversation we decided that it was important that we know all the facts and asked how much time she has left, the Oncologist asked what we thought to which she confirmed our worst fears.  We were basically told that if she is still here in 4 weeks time, she would be surprised.  My first reaction was that I wanted to take her home and let her end her days in her own environment and where the family along with support from carers can look after her.  I am now worried that I will not be able to cope with her as she has started to be really argumentative and aggressive with me.  I am torn and heartbroken and really do not know what to do.  If I take her home, I am going to have to leave my family and live with her 24/7 and I am not sure I have the strength to do that at the moment.  I was very close to a nervous breakdown in August due to a complicated family bereavement which I had to sort out as my mom being next of kin was unable to do.  Help!  I don’t know what to do!

Hi.  I am afraid it is only me again and I am no good on the medical front but I can see that you are going round and round in circles trying to decide what to do which is practical and best for everyone.  Did you ask about getting your mum transferred to a hospital closer to you - if you could do this would it be the best option?  Do you know why your mum has become difficult. I know this does happen but is it down to any of her meds?  Or just a symptom of her declining health?  Is there anything that the doctor could do to help with this symptom?  If not I can understand that you would need a great deal of support to care for her at home.  I know I have already said this but it might help you to give MacMillan nurses a ring - they may be able to help yu sort out a practical option.

Has there been any outcome to your complaint?  Please let me/us know what is happening .

Hi Annieliz

thank you for replying again to my post.  I suspect she has become difficult due to her condition and the location of the lesions rather than the meds, although I will ask the question.   The symptoms are very similar to a patient with dementia.  I am going to speak to the nurse again today because I don’t think I am going to be able to cope with her at home and I don’t want to end up resenting her.  She only seems to be argumentative with me and my daughter.

Apart from the care issue, there seems little point in moving her as the other hospital isn’t really any closer.  She was taken to the hospital that she is currently in due to there not being an A&E department at the other one anymore.  I think they know we are going to make a complaint as the care has improved slightly but still going to make a complaint.

We are currently dealing with the community nurse that works across three hospitals.  The Oncologist referred her to us as she is based there.  I have been in conversation with McMillan prior to my mom being hospitalised but things have changed dramatically since then.

we are making the complaint about her care this afternoon as the staff are not available over the weekend.

i wish I had the answers on the Best thing to do.  I would love to take her home but Zibam not sure that I will be able to cope!