Another person desperate for advice/support

Hello Everyone
I’m sorry to post yet another thread seeking advice as I am aware that there are other people currently posting on this site on this site who are in just as much need of help, who I don’t want to distract from, but I’m desperate. To cut a long story short mum’s spine is riddled with bone mets. Over the year her mobility has got worse and worse. She went into hospital (Royal Surrey in Guildford) three weeks ago and recieved radiotherapy to 3 different places on her spine where the tumors were pressing against her spinal cord. Instead of things improving as we hoped with the rads, she can now not walk at all. Docs have basically said they can’t do any more radiotherapy on her hip (where the main problem seems to be) and so she won’t be able to walk. I feel helpless!!! There is no one at home to look after her as we all have to work. She will hate life (she already does). I feel useless. There seems to be several different docs seeing mum - all of which are hard to get hold of. The nursing staff aren’t very patient with her either - she had to wait half an hour before some one helped her to the toilet. I just don’t know what to do now. I feel as if they have said ‘Sorry, thats it - off you go home’ without realising that she won’t cope by herself!!!

So sorry to go on. I’m just looking for advice or hope or any positive stories from people who have been in a simliar place. I hope no one minds me writing here. x

Dear nipper

I am sorry to read about the situation your Mum and you are in, our helpliners will be happy to talk things through with you and can offer you support, advice and a ‘listening ear’. The number to call is 0808 800 6000 Mon-Fri 9am-5pm and Sat 0am-2pm.

Best wishes
Lucy

Hi Nipper

Sorry to hear about the difficulties you mum is having.

I do not know about the specifics of secondry cancer and there are many more women on here who are more than able to give you advice on that.

However I can advise you to speak to the McMillan nurses they have a wealth of resources they can tap into, and also to ask for your mother to be referred to Social Services for help at home, if this is what she wants. A full assessment will be done about the kind of care she needs at home. A family member can be presesnt at the assessment along with your mum providing she has given permission for somone to be there.

Best Wishes
Linda
x

Hi Nipper

I’m really sorry to hear about your mum but don’t give up on the radiotherapy yet. My mum had treatment for her bone mets in May and she was so much worse after the treatment. It took a full six weeks before she started to gain some mobility but she’s much better now. She’s also on Fentanyl patches which have really helped with the pain. Mum’s onc and her GP have said all along that it takes anything up to a couple of months to feel the benefit of the rads and I did doubt them for a few weeks. I really hope the treatment kicks in for your mum too.

Lynn x

Hi Nipper,

I can not help much with the secondaries, however I went through a similar dilema regarding care for my mother when she started deteriorating with dementia, I was in Hampshire and she was in Watford.

It is so hard and you feel so riddled with guilt. Does she have any friends who can visit during the day on a rota system? Having someone pop in for half an hour during the day to see if she is OK and perhaps make her a cup of tea etc. can help relieve some of the anxiety. Good luck with the social services and do call the MacMillian Nurses. Is there a local hospice with a day centre near you - my Mum also had carcinoid syndrome, she went once a week and really enjoyed it.

Please remember to look after yourself during this difficult time

Jacqui

Thank you all for your responses.

Jacqui - Mum has got friends but they too have to work. I have just got back from hospital and we’ve been told that they will try radiotherapy in a new spot that showed up on the mri but they are not particularly hopeful. Surely there must be something else that could be tried to stop the mets spreading so quickly!? Fermera and Megace did nothing and now she only has zometa (bone strengthener). I will try to contact MacMillian nurse on Monday but there is no one to contact over the weekend. Mets in her skull are also pressing on a nerve causing double vision and this also needs rads but that won’t begin to be sorted until Monday when all the Docs are back in. Just so worried. Thanks again for replies xx

Hi Nipper, what other treatment has your Mum had? I’m on my first chemo for bone mets, Xeloda tablets and so far they’ve been really easy to tolerate. If your Mum has only had Femara and Megace it leaves lots more things to try. Faslodex, a hormonal treatment, injection, is one. Hope the Mac nurse will be helpful…from the MRI they should be able to tell why your Mum is having mobility problems…sometimes pain in the hip comes from tumours in the spine and Lynn is quite right, sometimes you can feel worse before you feel better after some radiotherapy.
Your Mum is entitled to all sorts of aids if she’s having mobility problems…to help make life easier, make bathing easier etc…and a Blue Badge and Disability Living Allowance too.
Take Care…x

I’ve managed to get my aunt who has had strokes all sorts of help. I have people going in several times a day, a couple of times a week they take her out shopping and for fun, and I’ve had adaptions to her house. Some has been paid for, others we pay for on her behalf as she has savings of over £23,000. She needs to have a care assessment by the local authority. Carers are entitled to assessments in their own right. I received a grant of £300 which I have used to give grants of £100 each to two of my aunt’s neighbours who help her out, but otherwise I would have kept it for relaxing activities.

Carers have to look after their own needs as well.

Mole