Life after treatment advice

[Hopes77]

Hi I am posting this for advice as a carer for my mum.

She has Neuroendocrine cancer in her lung with Mets to her liver.

I've posted before and have been given sound advice.

My mum is 78yrs next month.

She's had 4 rounds of chemotherapy which finished in Feb and we were told for a 2nd time after a repeated cat scan her cancer has shrunk further. Good news.

She is to commence bone chemo injections on the 13th of April, one a month for 6 months.

She has a cruise booked for early July and her Oncologist told her she can go on it. More good news!

Her balance has been off since Oct and 2 weeks ago she had a very nasty fall which resulted in 20 stitches to her forehead.

She was admitted to hospital who confirmed again her tumour in her lung had shrunk further but they had found a small blood clot in her lung which is very common with undergoing chemotherapy.

They started her on 28 days of fragmin injections and her Oncologist wants her to commence tablet blood thinners when they finish . She has been referred to a haematologist.

They surmise that her fall was due to having very high blood pressure which is being monitored.

I got the Dr out to her on Wednesday who said her blood pressure was high and commenced her on a low dose bp tablets at 2.5mg to commence with.

The fall has knocked her confidence greatly, she's very depressed but won't talk to anyone.

I've wrote down the Macmillan Nurses number on 3 separate occasions for her to talk to them in confidence she refuses.

I'm at the end of my tether.

I'm her only carer and I have health issues myself with I'm on a concoction of medication for.

I feel like I'm going under with the strain of it all especially as even with such good news these past 2 weeks it hasn't had any affect on my mum.

I'm looking after 2 homes, do all her shopping and cleaning but also being moaned at as it's not good enough.

I've been in contact with our local council who have arranged an OT assessment later this week to have some adaption put in place, they are also going to discuss with my mum a community care package for help with bathing etc . I know my mum will refuse this.

I am waiting for lifeline to be installed and she is being referred to a social worker at long last.

I've been reading about life after cancer treatment and I know for some people thus is harder than having the cancer treatment.

She is complaining of feeling very hot like a flush. But her bloods have been checked and there is no infection.

Her appetite has gone again but I think that this is a result of the shock of her fall.

She is also on ensure drinks.

How can I continue to offer support and try to get her further advice and support from the professionals when she refuses?

All I can see is her dipping further into depression.

I've offered to purchase her books to read on the matter..again she refuses.

I'm lost!

[kitcath]

Dear Hopes77,

My thoughts go out to you as the sole carer for your mother. Thank God for her good response to treatments. I can understand how she has lost hope and confidence in midst of her physical weakness. I myself is a stage 4 NSCLC patient undergoing treatment. I have been able to remain hopeful and joyful because of the Lord Jesus Christ in Him we have eternal hope, His grace and compassion. Jesus has restored hope to many very sick patients. A chaplain at her hospital or Christian counselor may be able to help her.

God bless!

[Hidden]

I understand how you both of you feel ,I have had treatments surgery initially then chemo then radiotherapy for brain Mets ,seizures .I feel that I struggle on a daily basis, pain fatigue and generally slightly down .I am 58yrs and my family helps me to keep motivated they need me so I keep going.My mother also had lung cancer but not diagnosed until her 60's ,I had no idea how much she must have struggled she lived a 5hr drive away and had help from local services she also went to a hospice once a week where she did art therapy and I visited for long weekends once every 6weeks.I too visit a cancer centre run by McMillan which I have found very useful talking to others in a similar situation helps and also helps relieve my family as I can let it all out in there if I want too.Perhaps that's something your Mum could do getting out on a daily basis is key to feeling better and putting cancer aside for a few hours.Its hard for both of you and I wish you both well .Diane

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Hopes77,

I am sorry to hear about all the concerns you have about your mum.As a carer you should have a carers assessment yourself see carersuk.org/help-and-advic...

You should ask the social work department about arranging this in order to provide you with any help that may be available to you to help you with your caring role.

It might also be an idea for you to speak to the lung cancer nurse specialist involved in your mums care and ask for their advice.They may contact your mum and suggest a home support visit from a Mc Millan nurse or district nurse to assess her symptoms as part of her ongoing care.She might be less likely to refuse help if it comes from a professional.This may take the presure off you.

Kind regards,

All the team at the Roycastle Helpline.

[Hopes77]

Thanks everyone but the early response team where brought in yesterday and she will have 4 carer a day alone with physiotherapist to get her on her feet.

It's a relief for the both of us after 10 months of struggling to finally get some help as the following months have taken a toll on my health also.

[Mariabanana]

Hi Hopes77

I also have pulmonary neuroendocrine cancer and mets in liver that have responded to chemotherapy (etoposide and carboplatin). I too get night sweats and the odd hot flush. My docs think that may be down to early onset menopause in my case (I am 40), though this has yet to be confirmed. My feeling is that the endocrine system is all about hormones, so it would seem fairly logical that endocrine cancer would mess up the body’s hormonal balance in some way. If your Mum would like to have contact with someone who has the same cancer (it is pretty rare) please let me know how she would prefer to communicate and maybe we can help each other. If we get to the point where we need scientists to develop a bespoke treatment for us, we will both have double the chances of persuading them to do that if we can offer them two candidates instead of one.

I really hope she will talk to me.

All the best - you are doing a very difficult job. I have also found my relationship with my mother is the one that has been the most profoundly affected by my cancer. It’s a horrible disease.

[Hopes77]

Sorry I am just responding Mariabanana but I've had a very stressful 10 days.

The permanent carers are now in situ and are a big help as I'm trying to recover from my virus.

My mum has been up and down and is in a lot of pain with her lower back.

We seen the oncologist on Friday who will be referring her to palliative pain management team to get on top of her pain.

They have given her 10mg of amyltripline to take before bed, 8mg of co codeine, and lidocaine patches.

She's only been on them since late Thursday and is adamant that it's not helping.

The oncologist is arranging and mri early May to check on her back.

She did have a cancer lesion on her spine which they said had been killed off by the chemotherapy treatment and she's due to commence in 2 weeks bone chemo injections which they said will help.

I asked the oncologist if he was happy with the way my mum has responded to the treatment and how the cancer has responded.

He said he is more than happy as the cancer has shrunk.

He said there is no cure for this type of cancer but they can manage it.

The bone chemo injections are targeted therapies.

Some how I'm not convinced that the pain is due to her fall and I'm concerned that it could be the cancer?

I've spoken to her nurse this morning who advised that my mum has not given it enough time for the medication to get into her system and if she's still bad on Tuesday to contact the Gp.

It seems that there is never any end to this.

I will read my mum your response and I'm sure she will be happy to make contact with you.

I'm wishing you well with your recovery.

Take care x