Our mum had a stoma fitted last September to save her bowel. She has anal cancer. She has had one course of intense rsdio therapy to try and shrink tumour and is in a lot of pain especially when sitting. In the past month she has had a fungating ulcer at tumour site. My sister and I give her a daily shower which is over the bath . She is 85 and tires easily so we make sure she has a hot meal at lunch time at the back of her district nurse folder she has a yellow booklet says care plan, doesn't look like it's been written in. District nurses have said they will come in once a fortnight last time was just a chat didn't even look at site of ulcer we had to request a visit to do this
Me and my sister are doing our best to care for mum , I am 56 and my sister is 53 and we spend as much time as we can around mum I have a full time job and my sister runs a charity for community transport and she is there half a day in the week I pop in on way home from school and there at weekends.
She seems fine ,a bit unsteady on her feet and tires easily takes co cocodamol for the pain. The other day I gave her some around 6pm ssid she could take some about 10pm. She writes down this in her diary checked yesterday she had taken another dose at 9pm is forgetfulness a symptom of later stages of this cancer . She has recently had my increased.
We did have Macmillan nurse visit with district nurse and said mum could phone her if we needed to .mum was diagnosed with in operable anal cancer in August 2020. What is life expectancy of this cancer and how will we know dont want her to be on her own when her time comes but she wants to stay in her own home.we were hoping to take her on a few trips but because of her bag she worries about leaving the house. My sister booked a holiday but mum said no .
Hi Julie.c64 welcome to the group, I'm very sorry to hear about your mum's situation, it must be a very difficult time for all the family. I see that you and your sister are providing care to your mum at the moment but there may come a time when your mum's care needs exceed the level of care you are able to provide. Your mum is entitled to a social care needs assessment. Her Local Authority needs to be contacted to carry this out. They will assess what care needs your mum has and how those needs can be met.
You mention that you have found a blank care plan. This is something different from the social care assessment. This is where your mum can state what her wishes are in relation to her future treatment, eg choosing to remain in her home and so on. The Macmillan nurse would be best placed to assist with that.
In relation to the fungating ulcer, this needs to be kept a close eye on and it's worth asking the District Nurses to visit more often to carry out regular checks.
Forgetfulness is not usually a sign of the later stages of this particular type of cancer, it is more likely that this is due to tiredness. In relation to life expectancy it is very difficult to be accurate about this, I would perhaps discuss this with the Macmillan nurse.
Caring for someone is difficult and we have a group for carers only on this site with whom you could obtain further advice and support . If you click on the following link it will take you straight there https://community.macmillan.org.uk/cancer_experiences/carers-only-forum/
Also, you can always call the Macmillan Support Services for emotional support. Most services are open 8am to 8pm, 7 days a week, it's free to call on 0808 808 00 00 have a look by Clicking here
Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available, there's advice on welfare benefits and so on.
Please come back on for any further help and support. Bev x
Hi Julie.c64,
I would just like to reinforce what Bev has said, I would definitely speak to your mums GP about getting a referral for a social care assessment this would provide her with a personal care plan that can be reassessed & altered as your mums needs change. I would also enquire if you could get regular district nurse visits to care for the ulcer. I know you probably don’t mind doing it but if your mum could get a personal care plan that would mean any time yourself & your sister spend with your mum can be social time rather than spent on caregiving. A relative of mine who is now immobile & lives a distance away from me has such a plan & she has a lady that calls 4 times a day to get her meals & help her to get up, bathed & dressed on a morning & washed & ready for bed on an evening, my mum then calls to see her & their time is spent with a cuppa & a chat rather than with personal care etc.
Regarding your mums forgetfulness I would agree that it’s more than likely connected to the fatigue & maybe her pain medication, sometimes that can be a juggling act to get it just right.
Bev has given you some useful links to have a look at. I really hope you manage to get your mum out & about a little as I’m sure seeing a bit of the outside world will be good for her mental well-being & it’s good for your soul too.
Nicola
