Mam has cholangiocarcinoma

Hi Margaret,

I am so sorry to hear of your Mam's diagnosis. It is an indication of the level of your love for her that you are finding her illness so hard.

A cancer diagnosis and treatment is hard on the patient. But it also has a huge effect on their loved ones. Because of this, most Cancer Support Centres are not just for patients but also their family and friends. I would recommend that you find one near you and give them a buzz to ask if you could drop in for a chat. It could really help to talk about your feelings. And you may also find they have advice or services that they can offer both you and your Mam to help make this time a little easier for you. E.g. I found out that we have a volunteer group locally in Drogheda who drive patients (and 1-2 accompanying family members if possible) to and from appointments.

It really moved me when you said that you 'miss(ed) her' already. It totally understand how you feel its like you have already lost her with all that is going on. Cancer can take over your life with all its appointments, debilitating symptoms and treatment side effects. I feel it becomes more important than ever at those times to try to enjoy life - to make time to do nice things. And to laugh (impossible as that might seem). If she is well enough, maybe you could take her for afternoon tea, get some pampering done, or just do something together that she likes. Even if she is unconscious in her hospital bed, brushing her hair, or reading to her could help you both.

Please keep us posted as to how things are going.
Hugs to you. And your Mam.

Flo.

Dear Flo,

Thank you for your kind words. I have never posted before and was surprised while reading back on the post, how raw my words were. With family members I am strong and help them along. We are all at different stages of grief and wish we did not have to accept this. My mother is looking for a miracle even though she knows the harsh truth. I am unable to talk to her about it as she changes the subject and I don't want to upset her. She is my whole world and means so much to me. She has always been there for me and helped me and my children.
I went into arc, opposite the Mater hospital in Dublin and the lady I spoke to was lovely. It was far too early to speak to someone and I don't want to be upset in public. I have seen a poster locally about a group that meet monthly, maybe I will go. I am a very private person and find it hard to discuss personal feelings.
A cancer diagnosis is hard on all the family, especially when palliative and the pressure is placed on all family members. Some think they can make it better, others try to do too much to apologise for past mistakes and others bury their heads in the sand. There is no right or wrong way to deal with a diagnosis.
Special family events occur and all I can think about is that the next time or the next birthday my mother will not be present. Tears fill up in my eyes and I go off and sort myself out and come back again. The time we spend together is very precious but feels stilted and I wonder is this the last time we will do this together.
My mother is living at home at the moment but there has been a recent dip in her health. Her eyes are so black and dull. She sleeps but wakes up tired and never looks rested. I wish I could take it all away and have her for always. I am being selfish, I know and I am very grateful that I was fortunate to have her for this long but it just is not long enough.
I hope that all is well with your family. Thank you for your response.

My mum has been diagnosed with the same cancer. Just 2 weeks ago. Can't wrap my head around it. It feels like it's happening to someone else. I'm being strong for my parents but then at moments it catches me. Usually just before I go to bed. I start picturing occasions when she won't be there, then I physically can't breathe. We were told that 12 months is the average but we are obviously hoping for more. I wish I could make sense of it all.

Dear Amka,
It is terrible to hear a diagnosis of Cancer and especially when it is palliative. Take one day at a time and enjoy your time together. Try and forget about time, as if I could have it all again I would not have asked about time as I found myself waiting for it to happen. I hope you have someone you can talk to about all this. Talking helps but it is hard to find someone removed from the situation that you can talk to. I went into ARC in Dublin after the diagnosis but it was far to early and too raw, all I did was cried. There are good support groups locally who support family members also. I haven't attended myself but I hear they are good. My grief is very personal and find it hard to share. Is your Mother home from hospital and is she considering chemo to manage symptoms ? My Mother had 3 cycles of Gemcitabine, a palliative chemotherapy. I wish you and your family every blessing for the future. I still haven't got my head around the diagnosis, I talk but it is as if I am talking about someone else and not my Mother. I am trying to detach myself from the reality but you do eventually realise it is happening and there is nothing you can do to stop it.
If there is anything I can help you with I will. Mind yourself and take care. I will say a prayer for all your family at this difficult time.

Margaret

Thanks for your advice. It's what I have been telling myself. I find if I think about it too much I'm nearly planning life without her and then I have remind myself she is still here. We've been making plans to make it the best year we can. We're still hoping that she will be around much longer than that. She is starting chemo in a few weeks, Gemcitabine and Cisplatin. We won't know then until the scan if it will work. We know it won't cure it but it might slow it down. Especially as mum is not jaundiced or have any other symptoms other than the pain. I just feel my head is all jumbled. Arc is here in Cork as well but I don't know what I want to say yet. If that makes sense.

I do feel a bit detached at times. Not from my parents but like it's all happening to someone else. Sometimes it feels like this is happening and that yes my Mum is going to die but that at the back of my head I think she will still be around after. I'm probably not making any sense but it's actually good to just type it all out. At least Mum is home and we can spend time. I'm looking into reducing my hours at work so I can be there more for the 2 of them at home. I've only 1 brother and unfortunately he's in London so I'm their main support system so they really do need me but at least I feel like I'm doing something.

I'm rambling a bit now so i think I shall go now. I'll keep you and your family in my prayers.
Amanda

Dear Amanda,

I too found it easier to type than to talk. You make perfect sense to me as I too was very muddled and addled in my thinking. This is not an easy diagnosis on anyone so don't be hard on yourself as this is all very strange. You will know when its time to attend ARC if you want to and maybe you never will.
I am glad your Mother is having Cisplatin and Gemcitabine, my Mother was not suitable for that and she would have a lot longer if that had of been suitable. I wish her the very best and hope she doesn't have too many side effects. My Mother ended up having falls and fractured her wrist while on the chemo and also had a clot in her leg.

You are right to look for reduced hours now and enjoy spending some extra time now. It is very hard on you being on your own with your brother in London. The palliative care team will also visit your Mother while she receives chemo and monitor for side effects and they can also be contacted. Their service is very stretched in the community.
My Mother went on a few holidays and visited places she always wanted to. She did a lot of things and friends she had not seen in years got in contact when they heard she was unwell. I hope neighbours and friends can help out and support. I found that some people made it very difficult for my family by telling her that she might be cured and they might be wrong because she looked so well. My Mother clung on to hope and I suppose that is normal but when people told me that my Mother will be cured it made me angry. Deep down inside I want a cure but am a realist and didn't want my or my Mother's hopes dashed.

I wish for you and your family many happy days spent together and it is the simple things that count. My Mother is very unwell now and she is so grateful for every hug and for me to sit beside her, even if we don't talk. Time is very precious, so don't spend time thinking about the future and live in the present. Take care of yourself and make sure you take time for yourself.