Palliative care

Please think really seriously, about not having treatment, 

my mum has only experienced being tierd , I know this is so upsetting and heart breaking, but with out treatment my mum was told 9 months average and her cancer is only small in lung but specs on adrenal gland, which means the cancer cells are in the system now, 

the chemo is to kill all them awful Cels floating  around before they go into your organs and bones, 

the immunotherapy is targeted to your immune system so when you come of all Drugs your immune system will know to kill / keep at bay the cancer  your immune system will Mimmick the immunotherapy, 

please speak to your family about this and how you feel,your a strong non smoker, this will All Work to your advantage ,  

Think about the things your want to be around for,  xxx 

I’m so so sorry you feel like this xxxx 

I think I have the same cancer as your mum but in both lungs and in my lymph node between the lungs.  I’m waiting on another biopsy to see if I can have tablets if not  a mix of chemo  and immunotherapy. My prognosis was the same as your mums and I hope she is feeling less tired now.  I’m just in shock at the moment with a thousand thoughts going through my head and crying all the time. But i only had all the details on Monday so I guess it’s early days and you and your mum have been through it all. Thankyou for taking the time to write back to me x

I will be totally honest with you, I think we  want some one to just say it will be ok, that’s all I want is to hear them words, it’s ok not to be ok. It’s normal to cry and feel angry, I feel like this all the time, my mum is 66 still young in my eyes, but we have to be positive and believe the treatments will work, 

mum mums cancer is not cureable but treatable, 

here’s a positive story for you , my friend at work she is 58 her dad 50 years ago had lung cancer , he took a tablet once a day to keep the cancer at bay, and it worked he lived for many many years a normal healthy life, 

here if you need to say anything, it is a rollercoaster ride it really is, 

but just look at the future once the cancer has shrunk / or there is no evidence of disease , and your on maintenance treatment,  all the lovely things you can go bk to doing,

also everyone handles the treatment differenly, u may be fine with it, there so many medicines they can give you to stop you feeling poorly. Medicines have changed  over the years,  the Brain is a powerful tool please try think positive xxx

sending u love and hugs xx

Hi Nicole

had my second biopsy last week so be to wait until the 19th of July to see my consultant and get the results with the view to whatever treatments I can have. I feel so fit and well that I have a great fear of being ill on the treatment. Like your mum my cancer is incurable but treatable.  I had a visit from the hospice nurse last week she was lovely but it made me very upset.

how is your mum and her treatment going ? You are both in my thoughts.

Mags x

Hi Mags.

how was your biopsy are you feeling ok?,

my mum is ok she has had her 2nd treatment and the 3rd chemo treatment is due on the 12th July I think ,

but this week it is the 10th-14th day after treatment so she not allowed near anyone due to white blood cells being very low and more vulnerable,  once they start your treatment these are the things that u need to follow, to prevent any infections or getting poorly, 

My mum says she is frustrated as she is very tierd but she’s ok from when she gets up till late afternoon and then she has to rest, but she said she will take that as lots of people get more severe side effects,  with this whole thing is the waiting game, even while mum is having treatment it’s a waiting game to see if the treatment has worked,  I hate this disease, 

my advice is to keep as busy as possible with reading books, watching box sets, documentaries. Find your self things to do,

eat plenty and drink plenty,

get a thermometer and a blood pressure machine,

and a diary to write everything down ,

so on the 3rd day after treatment my mum is exhausted , and that’s what it’s been like both treatments,  so we have a pattern we follow type of thing, 

im Sorry about the hospice nurse, of corse it’s upsetting, hope she gave u lots of advice,  just remember there’s so many people living with lung cancer for many years,  there was this 94 year old women in the chemo chair last week, my mum said she thought she was in her 60’s , she was telling my mum she has lung cancer and stomache cancer and goes for chemo once a month and been doing this for 7 years,  she had plenty of energy when she walked in, she said it gives her more time with her family,  

believe in the treatments medicine is so advanced these days, xxxxx  

sending u lots of love and hugs xxxx 

Hi Nicole

your mum seems to be doing well under difficult circumstances and all the waiting. I hate this disease like you it’s awful for the person and their families. My daughter is so good like you but it has taken the heart out of her especially as like your mum I’ve always been so fit and healthy and my son just cannot face it at all.

my biopsy went ok and they say they have got 4 good samples just hoping something good comes from it and that I can have less invasive treatment. My cancer is incurable but treatable to try and contain it so I’m keeping my fingers crossed and for your mum too.

thankyou for the encouraging words . I live on my own and sometimes feel really anxious and afraid as I’ve never known anyone with lung cancer so it’s good to talk on the forum.

love to you and your mum xx

My mums cancer is in her lung and spotting on her adrenal gland , hoping with the chemo it will blast the cancer cells that are there and the immunotherapy she is on is called keytruda, that’s suppose to get your own immune system to fight of cancer , it’s amazing what the treatments can do, 

I feel very sad  the last couple days as we have told mum no one to go near her on there vulnerable days, to be honest mum hasn’t really gone out or seen anyone since this is going on, just for extra safe measure,  but cuz I see mum near enough every day for a few hours before work and the weekend, I feel awful today , but so glad we have mobiles and face time, people at my work tell me they see the difference in me and so does my partner, but how are we suppose to be ,, the person that gave us life and is going through this and who we love with all out heart , is dealing with cancer,  

Im Not sure if we are allowed to say what areas we live in, but I work on the railway Thameslink great northern line,  that runs between Moorgate and Welwyn garden city,  if you are local to me, I can pop by and see you if your feeling lonely xxxxxx 

sending u big hugs x 

p.s my sister the  same as your son,  I think this tehthe way of dealing with things , my sister has seen my mum twice since April when she got diagnosed,  

xxxxxx

Hi Nicole

thank you for your so kind reply. I’m afraid I’m a long way from you here in Lancashire but it’s love to hear from you.

its so sad that not only the cancer but that your mum has to protect herself from outside contact so thank goodness she has you as I feel from your writing that like myself you have a lovely relationship with your mum.

its back to the waiting game for me until the 19th of July when I see the doctor for my results and to see if the planned treatment has changed at all. If not I start my chemo and immunotherapy on the 21st.

Does your mum have a digital thermometer? I’ve been advised to get on for when I have my treatment.

I think one of the things for me ( and many others ). Is as I feel so well I’m afraid of the treatment making me ill and not being able to cope on my own as I’m usually really strong having been on my own for a long time.

hope your mum is doing ok.

love from Mags x

Hi mags.

Lancashire is quite far. Bet it’s lovely in the summer months,

I think you are doing amazing, if you make sure you eat well and drink plenty thts a great start ;),

My mum has a thermometer  that goes under her tongue or under armpits,, I got her one from Amazon and it was about £30 u can put it in your ear . But she uses the £7 one lol, 

keep a diary of your temp, 

my mum is very tierd at  day 3 after the treatment and for about a week /10 days after she is tierd more in the evening ,but she is still doing her garden and cleaning her house, we are just keeping her under lock and key while the chemo is going on. 

 my mum has been a vegetarian all her life , but to get more protein in her diet she is now eating fish and chicken, which I’m so proud of her, as it must of been hard as she hates the thought of animals being hurt / for food,

I think being positive and eating healthy and drinking plenty fluids, and still doing things around the house , but when you feel tierd have a rest and not to over do it. 

I love my mum so much, it breaks my heart,   I wish I could do more to help her, xx

xxx

It’s the unknown which is scary, and I understand that,  so keep your mind busy xxxx 

LOts of love and hugs xxx Nicole xx