Looking for advice so I can help my daughter through this difficult moment

Hi , welcome to the online community, (I can see this is your first post). I am sorry to hear about your daughter, she may feel she is loosing some of her independence and have lots of emotional about her diagnosis and the changes it has brought to her life, and part of that is maybe the resentment you can feel from her, it’s probably a bit to do with losing control (as I know that’s what gets to me) but I’m sure she’s probably very grateful that you are there for her. There are so many different emotions that both carers and patients can feel. I have to declare here that I’m a cancer patient but due to my age I’ve experienced friends and family with cancer to. 

You mention that you are too scared to be invasive and to ask her too many questions, I’m wondering what you want to ask her and and what is holding you back, and is there a way round that. 

If the questions are general ones about her non Hodgkins Lymphoma, you may find you might want to join the group below for the personal experience of others.

https://community.macmillan.org.uk/cancer_types/non-hodgkin-lymphoma/discussions

Or read the information and support pages or ring the Macmillan support line to talk things through on 0808 808 0000

I found the information and support pages on talking about cancer very useful, I found when I was first diagnosed I felt numb and wasn’t feeling anything and my husband was also not showing any emotion as he was wanting to stay strong and we needed to have a long chat to be able to get our feelings out, to show that we both cared about each other and how the change in dynamic was going to work for both of us. https://www.macmillan.org.uk/information-and-support/coping/talking-about-cancer

You mentioned that she’s come back home for you to care for her so you may want to join the carers only group (where I as a patient can’t post) https://community.macmillan.org.uk/cancer_experiences/carers_only/discussions

Your 23 year old if she is anything like mine were want to feel very grown up and coming home they want to feel they’re another adult sharing the house but with the advantage of all the love a Mum can give. I haven’t had to cope with the cancer of a child though just the return from university for a year before moving on with their lives miles away and overseas. 

In general, I drive to the appointments and my husband drives home, we’ve agreed that I don’t want to remember a hospital day for just going to hospital so we arrange to go to a National Trust place for a walk and lunch depending on the timings. He hates blood and fainted when our children were born so he comes in to the chemo ward to see where I’m sitting then goes for a walk to get a paper to he misses the cannula going in, and I get to read the paper when he gets back while I’m sitting there, and he fetches me cups of tea. Lots of people go into chemo on their own and there’s usually a volunteer if they want a conversation or a cuppa, but younger people I have noticed like to often listen to their own music or read something on a tablet and might prefer going on their own. 

Im in a 3 weekly routine, I want my husband to wait on me for about 3 days and then we are back to normal but I am 4 years into this and with a different cancer and different treatment. We plan what we want to ask before each appointment take a list with us (if we remember) and my top tip is to ask who you can contact if there is anything you forgot to ask in the appointment, it’s usually the specialist nurse who will answer or liaise to get an answer from the consultant. I hate control being taken away from me but I can gladly delegate if that makes sense. I hope you find a happy way to talk things through as I find it’s important to be open but with an outlet to talk things through with others as well.

i don’t know if I’ve out of place with what I’ve said and I’ve just thought of another group for you that is probably going to be more help than my rambles

https://community.macmillan.org.uk/cancer_experiences/parents_of_adult_children_with_cancer/discussions

But if I can help further press the reply button and I hope others join in with what experiences they think might help you.

Hi,no you are not out of place in what you have said at all .I need to hear people’s opinions and suggestions and am grateful .

I know my daughter feels like she has lost control of her life ,she definately has been Miss independent up until now ,Living abroad for two years and then moving to another part of Italy .She has had to be very dependent on me due to her dr telling her she needed to be assisted at all times and me be being the one who is always present .

She has chemio every 15 days and it is usually 8/9 hours .We have a full day as we need to be at the hospital by 7:30 am and we are lucky if we are home before 9 on the evening .Im not sure how it is in the Uk but here it is like this .The only support she has is the two girls she met during her stay in hospital and they compare symptoms ,laugh and chat together whenever they meet or online ,her sister suggested she joined  the group here on this site .

In the last few weeks we have started to have little outings in the evenings ,these  can become more once the weather becomes a bit cooler we are stillin the mid thirties every day and although this is cooler than July/August she  finds it too hot .I like the fact you drive to your appointments ..good for you ...and a nice lunch out as well .I will try this with Sofi when we have our appointments for bloods and other tests .

thanks 

Hi , I can only imagine what it’s like to be at the hospital for that length of time, I’m only there for 1 to 2 hours max, as my treatment just takes 30 minutes plus saline solution either side to go through. I think I would run out of things to talk about, how do you cope with the time? !

Evening outings sound a good idea as some chemos make you very sensitive to the sun as well. I’m a melanoma patient and am a shade seeker, a live near a bird reserve which has lots of trees and shade and is lovely in the evening for being cool, the bird song and the occasional deer that wonders out when they think they are alone. I’ve never been to Italy where it sounds like you are posting from, I can imagine you having some beautiful places to visit and make a positive experience for each day.