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Looking after a loved one with cancer? This is a safe and supportive place to share your worries and emotions. Please remember when posting that this group is for Carers only.

Hi Just looking for a bit of advice and probably have a rant

jjacc
Posted by

Hi and I apologise , ive probaby not posted on here before , usually just read the posts on the different groups but tonight I felt I needed to post,

My mum has been fighting cancer since 2008, its goes away and comes back, shes had laser treatment, next it was radiotherapy and after that it was her voice box removed as there was no other choice. She said no at first but then went ahead with the op...…….operation went well but as the radio had damaged the tissue  the swallow tests never went very well so she had a nasal gastric tube for almost two years until she had another 2 major operations to sort all the damaged tissue. Finally the ng tube could come out and she was able to start a very soft diet and to this day that's all she can manage. Might as well add what happened after that, she took a bad spinal infection and lost all her mobility, it was really really serious but because of her overall health they couldn't operate so again it was back to stay in hospital for 12 weeks of iv antibiotics. There was no guarantee this would work but thanfully it did. She was transferred to our nearer hospital where she had a bleed in the brain. She got through that as well and was finally allowed home with oxygen at home to her with her copd.

we had a good few months of no health problems and were attending a routine appointment, nothing of any major concern showed up but she was sent for a scan just to be sure. Called back tor the results and the consultant said good news is there throats clear, bad news was cancer in lungs, said not sure if from original site or a new cancer.

Fast forward, she was referred to respiratory, doctor asked if we knew why we were there, we said no not really. He was very matter of fact and showed us the tumours on the lungs,he said it was mets from the larynx cancer said nothing could be done and he would see her in December for a scan or xray to see what was happening. Long story short that December appointment was changed...….it was today.

Doctor asked if any changes in health since last seen by him, mum said no , just shortness of breath. Ok he said well we will discharge you, I said what about the xray and he said who said she would be getting one. I said YOU did the last time we were here, He then said theres no point doing an xray, it wont change anything and probably wont show nothing up how ever if u want one then he would send her round. My mum just shook her head and said no, so I asked her if she was sure and doctor just looked at me. I told him I was asking because I didn't want her leaving that appointment wishing she had said yes. He seemed to have no interest in what I had to say (actually asked me if I was with her the last time).

I go to every single appointment with her as she cannot speak at all, she relies on me for everything and I mean everything, from shopping , medication, appointments, prescriptions, dieticians. I deal with it all. I am not looking for a medal, im an only child and there is no one else. My mum doesn't want carers in, she doesn't go out without me because she needs oxygen and a wheelchair to leave the house. Anyway, I just cant believe she has been discharged and was worried sick about this xray and the results for it not to happen because I know she did want it and as much as I was dreading it I think it might have helped to let us know what to expect or even have an idea of how much time is left.

I changed my job last year so that I could be about to help more but I am really struggling to just get through each day just now and I know this isn't about me and I hope it doesn't sound like it is. Just feel like our lives have been on hold for years, unable to plan anything or go anywhere without feeling guilty and then if I did what if something happened. I am on call 24/7 if anything goes wrong or if she needs anything. I see my mum every day so I can make sure shes ok. I occasionally ask my husband to go in and check on her if im on a long shift but she always shoos him back out the door lol.

Today has been so hard and I don't know what to do to help her next, she was quiet upset and said again like the first time we met that same doctor she feels like he is just sending her home to die.

I will give our macmillan nurses a call on Monday, the girls who deal with us are fab. I guess I just needed to get this out because I was so angry today. My mum did ask if and when the tumours would start causing problems...…...no advice, he just said he didn't know.

Not Helpful at all, Anyone else had to deal with this and if you did then what did you do.

Thanks for taking the time to read this......its like a book.x

Bodach
Posted by

Hi and welcome to this part of the Mac community and there is absolutely no need to apologise for anything at any time. We all need to have a rant and let off steam at sometime and you certainly have earned the right to do so 

Unfortunately some doctors have a poor bedside manner and you met one this afternoon maybe when you speak to the Macmillan nurse on Monday she might be able suggest something but as your mother has been discharged she is now under the care of your mums GP and I would have a word with him, I take it that your mum has signed a form giving her permission for the GP to speak to you, and see what his next steps are.

I'm afraid I don't know what to suggest for your mum but would say you must think about yourself, you're keeping your own house going, doing a full time job and doing everything for your mum as you say it's 24/7 and try and get some help to take away some of the pressures off you. Have you explored the possibility of getting maybe a local volunteer from The Red Cross or AgeUK to do some shopping collect medications, although the pharmacy should do this for you. Meals on wheels to bring her meals anything that you think your mum would be happy will I would explore the local area for help it wouldn't be a carer just someone to pop in and do a few jobs for her like making her a cup of tea and it would take some of the pressure off you. Help is available if you need it and for your own health and family life you do need some help.

If you would like to chat to a real person with a friendly ear our telephone support team are available every day of the week between 8 am and 8 pm and not only will they listen to you they are there to give you lots of advice on how you can get help with financial, employment and welfare things and they are waiting to take your call on

0808 808 000

Why not give them a call you have nothing to lose as it's freephone call but you may gain something from it.

Feel free to come back at anytime and have a rant and let off steam any time you want, we all need to do it at some time and there's always someone around to listen to you. 

Ian

With a Stma Care and Management Certificate 

My Groups ● St●ma Support ● Bowel ● Carers ● Anal ● Family & Friends ● Bereavement ● Diagnosed at a Young Age ● Parents of Young Children ● New to the Community

You can call The Macmillan Support line on 0808 808 0000 every day 8am to 8pm

What is a Community Champion?

 How to update your PROFILE

The Bodach is LIVING WITH A ST● MA

jjacc
Posted by

Thanks so much for your reply, My mum still sees the ent consultants thankfully, they are all really nice but we don't go back there until June now. She had all the help available told to her before and as I was working the council carers were coming into do her medications (after a bit of a problem as they don't in general do stuff like that) She was able to administer them herself but struggled to open the bottles...…..its all liquid due to the trouble swallowing so it wasn't like we could get a pill box. Long story short, she said the people coming in and out were stressing her out and I just happened to go in one night and she had wrote the girl a letter telling them not to come back. Due to the fact she has capacity they couldn't argue and plus this was only to be for 6 weeks as she is under 65 so she would have needed to pay them.

Shopping, she likes what she likes and was told about the food train who do the list, pick the shopping up and deliver it but nothing ever came of that.

As she cant speak I do all the talking for her and that in itself creates problems on phone as you can imagine, however we were both at GP during the week and I asked doctor to again put it on mums notes so shes done that. We were actually there so my mum could get DNR on her notes. She is talking about sorting out a funeral plan...………………...I am ill at the thought of it and sometimes I feel I show no emotion but its hard as im sure your aware, Ive got to carry on as much as normal for my own family. Thankfully my wee job is just part time but I did have to change from a better paying job and was offered a good few other jobs but haven't been able to take them.

Anyway, I didn't come to moan about me but that's just how I feel today and i am thinking as much of myself today, hate to sound selfish but as much as I was dreading today I did hope for some sort of information. I will phone macmillan on Monday . Thank you once again for taking time to reply.I really do appreciate it. I will pop back again soon.

Bodach
Posted by

Hi  thanks for your reply and for filling in some of the blanks for me before I looked up the Food train details I had picked up on the fact that you were a Scottie like me. I hadn't heard of the Food train before and I think it's a wonderful idea and sorry it didn't work out for your mum, but who knows for the future.

You have a lot to tell about your mum's journey and it would be really helpful to the other members if you could incorporate some of the story into the profile part of your home page, you can put as little or as much as you like into your profile but it does save you having to repeat everything everytime you make a post and I hope to see you as a regular in the future. The following will show you how to complete your profile 

How to update your PROFILE

Just click on the above green text to open up a new page

You can also click on others members names to read about them.

If I can say that although you didn't come on here to moan about yourself you have every right to do so and we don't mind, if it helps you to off load then feel free to come on and do it, everyone needs a place to release their feelings and this is a good place to do it and I hope that by coming on here you will find some new friends that you can relate to.

I used to think it was strange when my mother used to talk about having money put aside to pay for her funeral and planning the actual funeral and now that I've reached that part of my life I find that I have done exactly the same, funeral plan in place, funds to pay for it and the order of service including hymns I want and the readings. We do it to help out children and that's what your mum's doing planning to make things easier for you.

I am sure when you phone the Macmillan support team they will be able to give you some good advice and information but please remember that they are not just there to talk to you they are there to listen to you for as long as you want, they really are a friendly bunch of folk.

Please keep in touch.

Ian

 Gail are you able to add something to this, thanks Ian

With a Stma Care and Management Certificate 

My Groups ● St●ma Support ● Bowel ● Carers ● Anal ● Family & Friends ● Bereavement ● Diagnosed at a Young Age ● Parents of Young Children ● New to the Community

You can call The Macmillan Support line on 0808 808 0000 every day 8am to 8pm

What is a Community Champion?

 How to update your PROFILE

The Bodach is LIVING WITH A ST● MA

jjacc
Posted by

Thanks, I will have a wee look at updating the profile and try and work it out. Was up at my mums earlier, she seems fine just getting on with things. I got the shopping etc yesterday but was so frustrated and angry with the Friday appointment that I just needed to have some time to myself so I came home . this makes me feel worse because I couldn't be of any help to her but I knew if I had stayed around id have been ranting away and that's not what she needs from me. Just feels like a never ending tunnel with no light at the end.

Thanks again for taking the time to reply, I really appreciate it.