What great news, Wacky! So pleased for you all, but you must all feel a bit knocked sideways, from the stress beforehand. Love to your Mum and hope your OH is doing well too.
Lavender
xx
Thanks everyone for your kind words as always.
Will keep you all posted on mums progress.
Thankyou all.
so where do i start… Mum has been back to the hospital to check on the rash that she had on her chest and back. The hospital gave her cream to help with it, this did not work. Apparently the rash is connected to the Lymphedema and damaged lymph nodes. Mums arm has now got very large due to the build up of fluid and has to rest it on a cushion as it is very uncomfortable, her forearm is the size of my thigh and she is unable to now wear her sleave. The fluid is now building up in her neck and face on the same side. I was supposed to be taking my mum and dad out in the car this morning but got an early call from dad to say that he had had to break into the bathroom as mum had been to the loo and locked the door but had not had the strength to get off the loo. This is the first time this has happened. Mum looks really ill and bloated. so worried about her. Mum has to go for a bone and body scan in 2 weeks time. She was put on Capecitabine and Domperidone tablets 2 days ago.
I had a phone call from dad today asking if i could go and have a chat with mum. when i got there she was in bed. she looked terrible. She has not eaten for 2 1/2 days. She is being sick. She refuses to take her Medication. She is hallucinating. (seeing things on the ceiling that are not there) She does not have the strength to get the the bathroom and my dad struggles to help her. (he is 78) Mum looks like she is filling with fluid, her neck and face is swelling on the same side as her arm, really bad. the swelling in her face is making her voice sound different, like someone talking with something in their mouth. She is still as stubborn as usual. If we mention hospital or Macmillan she gets very angry and upset. Dad and i dont know what to do for the best. HELP! : (
Hi Wacky,
I saw your comment on one of the other threads, and tracked you down.
That all sounds very disappointing after your news last month.
Although she looks angry if you mention hospital or Macmillan, things are not going to get better without getting help- if you have a Macmillan nurse contact I would phone them saying your Mum is not happy about it- but you cannot leave her the way she is or your Dad left feeling helpless too. You could maybe phone and ask to speak to her GP too or instead. Or phone the Helpline here?
Lavender
xx
Will also try and post a duplcate somewhere so people know to look for you here
Hi Wacky
I have posted a new post with a plea for people to find you here in “Undergoing Treatment for Breast cancer” How it got into Complementary therapy, I don’t know! Will try again.
This is what i wrote:
http://www.breastcancercare.org.uk/community/forums/undergoing-treatment-breast-cancer/about-wackys-mum-having-trouble-treatment
Poor thing this is horrible for all of you. Personally I would get in contact with Mcmillian. Your Mum needs to made comfortable even if she isn’t keen on having them- from my expereince they are very tactfull and used to dealing with difficult situations. Try getting her some fourty sips drinks (from the chemist) they contain all the nutrients one needs , try to get her to suck ice lollies or take small sips of fluid. She may be halucinating due to dehydration? Can you make your way to the lympodema thread (good luck with trying to find it!) but the ladies on there might have some more useful advice.
Hang in there
Caroline
Hi Wacky Racer,
I’m sorry to hear your mum has taken a turn for the worse, as well as the suggestions other users have put forward, have you phoned the helpline here? The staff are here to support you and your mum and will, I am sure point you in the right direction to find the help you both need right now. Unfortunately the helpline is closed until tomorrow morning at 9am, but do please give them a call, calls are free 0808 800 6000.
Take care,
Jo, Facilitator
Hi Wacky, so sorry to hear your latest update, you msut be very worried.
Thank goodness Lavender Lassie found your post or we might have all missed it.
The advice from the others is good. Fortisip and Forticream (not absolutely sure of the spelling) are what they use in hospitals for people who are very weak. Deydration can cause hallucinations, as can water infections (which can also have symptons that mimic mild dementia) - hopefully if she can get her fluids back in balance she will be more like herself.
Hopefully the hopsital can help clear the fluid from her lymphodema - she may have to be admitted if it’s very bad. I think phoning macMillan would be good, also does your mum have a specialist breast nurse - you could phone her.
Thinking of you - please come back to tell us your updates. Remember always what a great son you are and how proud the Mum you love is of you.
Thanks everyone for your kind words and advice. Mum was better this morning and has been out of bed today. Still very frustrating as she is SO against getting professional help. had to be very blunt with her today for her and my fathers sake. Told her she needs help, not eaten since Sunday not taking tablets. Memory is now herrendous. She asked me today why my son was not at work. He has anxiety and agoraphobia. He is unable to work. She had forgotten. Dad was out walking around our estate this afternoon in a daze and not at all himself. VERY concerned for him! When i tried to tell mum today she needs help and that dad needs help she just shouted and told me to go home. I didnt ! I think it may be best if i just ring for help and not my dad. If she was to know that we are going to get help she would go NUTS at dad. He gets everything in the neck from her all the time, so its hard not to upset her because after i leave , dad gets yelled at from mum! My son has been to see her today and has come back very distressed (he’s 18) it is affecting him more than he lets on, which is not good for his own mental health. Mum wakes dad up all through the night and says " oi you fallen asleep again" through out the night. He is exhausted!!! Im going to go back over later but i can feel the anger inside me towards my mum growing which i hate myself for. I know it may end in a huge row but enough is enough!!! i still love her : (
Well done, Wacky,
You go right ahead, it is better if you do it and not your Dad. We had a situation like that once with my Mum and Dad, where my Dad said “Do not call the doctor” We said “call the doctor or we will when we get there and we are coming over now” He thought there was no treatment for what he had but there was, and he forgave everyone.
She is too confused to be making good decisions and I don’t think you will find any doctor will criticise you for doing it, or your son or Dad.
keep going, we know you love your Mum and so does she really
Lavender
xx
Hi Wacky,
I really wish there was something I could say or do to make things better for you and your family.
If you haven’t done so already, I would ring the BCC helpline who may be able to guide you in the right direction with getting some help. There does come a time when you have to think of the needs of the whole family and not just your Mum. Hopefully, with the right help in place things will be easier for you and your Dad.
It’s quite normal for you to get frustrated with the situation but try not to get angry with your Mum, I’m sure if she wasn’t so poorly she wouldn’t be like this. Believe me, I know it’s difficult I have an 82 year old Mum and lost my Dad to cancer nearly 20 years ago.
Take care
Axx
So this is what happened yesterday. Me and dad decided to go to our hospital to see the Macmillan staff. We sat in a very quiet area that was very relaxed, offered tea or coffee and spoke to a very nice lady who made us both feel a little bit calmer. We discussed what had been going on and how ill mum was. She advised us that it would be good to get our GP to come out to see her to see weather she needed to be admitted to hospital. Our GP surgery closes at lunch time on a Thursday so there was not answer. The lady rang NHS direct to talk to them , they took our details and they would get someone to come and see mum. So we went home to wait for the call. We got a call from an emergancy out of hours service but they could not guarantee a time that we would be seen. So as adviced my Macmillan as opiton number two, i rang for an ambulance. So mum was taken into hospital A&E where they did urine and blood samples. Mum was kept in and is now in a ward. Now, i found out how bad my mum really is yesterday. They recieved, in the post, a copy of a letter that was sent from her cancer team to her GP. I was shocked at what i read. I have never been to an appointment with my mum and dad as mum is a very private " old school" person and didnt want me to go, so i have had to go along with what mum and dad have told me after they attend the apointments. The rash that is covering my mum front ,back ,neck and now left arm is infact not a rash but Inflamatory breast cancer. Dad says he was told " we cannot cure the rash, but we can slow things down" what they were really says was the cancer is incurable but be can slow it down! I dont know if its the way it was worded to mum and dad or as sometime happens, doctors explain things and you missunderstand what you have been told. so to bring things up to date, mum has grade 3 (or it was a few weeks ago) Wide spread Bilateral Inflammatory breast cancer. She has open wounds the size of 10p pieces between her breasts and the hole of her back and fornt is weeping and bleeding. I now know i should have insisted to my mum that i go the the appointments with them. Will keep you posted how she is.
Hi wacky racer
Just to say if you need some extra support or to talk things through during such a tough time please don’t hesitate to give the BCC helpline a call. The staff on the helpline are there to offer you emotional support as well as practical information. The number is 0808 800 6000 and lines are open Monday to Friday 9 to 5pm and Saturday 10 to 2pm.
Best wishes Sam, BCC Facilitator
Wacky, I’m so glad you got help but sorry that you have found out things are worse than you thought, it must have been a shock for you.
I know with my Mum either myself or my sister in law go to appointments with her now, she hasn’t got cancer but gets very confused! Sometimes they just hear what they want to hear.
My thoughts & prayers are with you
Axx
Wacky, I am very sorry that the news was not good but very glad that you got help for your Mum and Dad.
Thoughts and prayers with you all.
Lavender
xx
Hi Wacky,
I am sorry that things are worse for your Mum than you thought but you did the right thing in getting in the professionals. It is soo hard with elderly relations -finding a balance between letting them be independant and then them not copeing. They want to retain control but sometimes they just can’t manage - don’t beat yourself up about not going to Drs appointments you did what you thought was right and what they wanted. Hopefully your Mum will get the help she needs now and they may also be able to offer your Dad some support too.
best wishes
Caroline
Thanks everyone for your kind words and advice, it means a lot to me.
Mum has now been in hospital since Thursday afternoon. Yesterday she had an ultrasound on her arm and neck. The results on her arm (with the Lymphoadema) came back inconclusive but her neck showed a blockage in the main artery , probably clots. Late last night mum was moved to the cancer ward and is to undergo a full body scan this morning. Hopefully find out more later today.
Hi all.
Mum is still in hospital. She had various scans, xrays and ultrasounds last week.
The results came back ok ( puzzled after what we had initially been told) apart from the pain in her back. We were worried that the cancer had spread to her spine when we were told she had a compressed vertebrae.
Turns out this is caused from osteoporosis. So they are trying to sort that out and have Confined her to bed.
All seemed to be going ok, the swelling in her arm, neck and face had improved But then last Friday mum started thinking that the hospital was a hotel in Cornwall. Mums memory had worsened massively in a couple of days!
Mum was transferred to st George’s brain hospital at one in the morning Monday. They are to do a head scan Wednesday. They are concerned that the clots that they were treating had broken up and travelled to her brain.
We have been told to prepare ourselves for mum having brain surgery Thursday or Friday.
Can’t believe what’s been going on with mum. One minute we have bad news and we are all worried then it’s good news then bad Again!!
Hi Wacky,
Goodness, I’ve just shared that roller coaster ride with you - up, down, round and about. Thinking of you all - your poor Mum, hopefully they can sort the confusion (I’m assuming they’ve ruled out an infection as I know some infections can cause all sorts of weird hallucinations and confusion).
Reallt releived it’s not the cancer back. Osteoporosis is not something I know much about, but I think it can be managed quite well.
Hopefully some of the other ladies will spot your post and be along soon.
Take care and stay strong, you are one special son to your lovely mum.