I live in Australian - Terminal Mum lives in UK - Feel so far away?

[Jule1971]

My apologies firstly if this is not the correct way to introduce yourself etc but I am struggling and just wanted to write it down. My darling mum was diagnosed with terminal small cell lung cancer, which is inoperable, in January 2015 with suspected brain tumor. I live here she is back in UK with a partner and my sister lives about two hours from her. Aside from being upset I felt so very far away. Treatment started in March, five cycles of chemo, three of radiotherapy. From the outset it was tough on her, she is a fit 72 year old but after the first circle it basically destroyed her. I flew home to be with her for the second cycle, which in turn destroyed me. Mum deteriorated so much after this second cycle - she lost half her body weight, the left side of her body stopped working, she couldn't eat, couldn't speak without stuttering, can't walk, you all proberly get the picture. Drs have now confirmed she can not have any more chemo as ironically it is killing her but they want her to undertake ten more sessions of radiotherapy to the brain. She has had five brain scans which appear clear but the Drs want to be preventive. I just wondered if there was anyone out there who can relate to being so far away? Any advice or just someone who understands what I am going though would be appreciated. Blessings to you all.

[Jule1971]

Well although a fair few have read this post I gather no expats are dealing with this, I am thankful for that, but still wanted to update it as writing it down makes me feel better. My mum has just completed ten more sessions of radiotherapy to the brain and after a consultation with her Dr he does not want to see her for eight weeks for a scan followed by six week wait and then another scan, I gather to check how tumor in her lung is, it has shrunk, which is wonderful news! She is holding her own still but she has been warned that the next month will be tough. She did manage to go with my sister to see her wedding dress today, my sister getting married in January so very happy and hopeful at the minute that she will get to see it again at the actual wedding. I will continue to write here with updates as I stated mainly cause it helps me. x

[little_stitcher]

Hi Jule, thanks for updating us. I'm really glad to hear about your Mum! I hope you have a good day. Emily x

[Jules2]

Hi Julie Expat here but not in your situation, although I can appreciate how tough it is for you. Julie xx

[Jule1971]

Thanks Emily and Julie x comments appreciated x wait and see game at the minute x will post updates when I can as like I said this makes me feel better x

[gabiwun]

Hi Jule, I'm Gabe. My lovely Mum who is also in her 70s is not as far away as yours, but still 2000 km away from me. My sister is with her but I feel so sad and weird to not be there. She was diagnosed in March with uterine cancer, that seems to have escaped all over the place . She has had 9 weeks of chemo and just started to have problems with numbness in hands and feet. Some tumours have shrunk but some have grown and they have found something now on her spine. Tomorrow she gets results of a scan to find out more about it. This is my first time here. I can't sleep tonight. Every time i try, I think about it and have a big bawl. It must be so much harder to be on the other side of the world from them. I think about chucking in my job or applying for long service leave, but don't know when to do it. Feels like being in limbo. I have been in denial and telling everyone i am ok. Just this week I now feel I am not ok and really alone and messy. Feel better just typing this out though. I hope you have good news and good supports around you. I hope it is ok for me to tell my stuff to you here. I know I should read up on etiquette and do the intro section and all that, but am in boo hoo, 2am mode and just needed to make a connection to someone who understands.

[Jule1971]

Hi Gabe I understand exactly Hun. Almost every word. Have your seen your mum since the diagnosis at all? What support do you have, partner, cool boss, close friends? Who have you really spoken to, doctor, your sister, anyone? Unfortunately I need to go to work but will write back later. Hang in there Hun Jule x

[Jule1971]

Hi Gabe Please feel free to write how you feel or PM me its ok. I found by just writing on here it somehow felt better, real, being honest how I feeling not just how my mum is/feels. Sending much positive thoughts to you and your family xx

[gabiwun]

Hi Jule, Thank-you so much for your replies. Just writing to you last night helped get the feelings out of my head and I got off to sleep for a few hours. How hard does it feel to get yourself up for work when you have a bad night? But then once I get into a class room and get teaching it really sort of puts me right again. I do have some good friends and a supportive boss and my 22yr old daughter has been pretty amazing as well. Having her close has helped us both in the past few months. But in the last few days, since we heard they had found a tumour on Mum's spine, I have felt so scared and sad that I realise I have been keeping things at bay a bit and not thinking or talking openly about how big and terrible it is with anyone except my daughter, and even we don't talk about it all the time. We have road tripped to see Mum twice since the diagnosis and that has been really good, though the particular kind of hardness of being at a distance is replaced with reality of the constant anxiety about how she might be feeling all day every day. I respect and feel so grateful to my sister who has moved back home to care for Mum and our step dad who is ten years older. When we come home I do feel a bit in the dark sometimes though Mum and my sister really try to keep us in the loop as much as possible. And then, after a bad night, fearing bad news today, it was good news! Doctors say that all the tumours, including the one on her spine, have shrunk a lot and her marker levels have dropped right down. I don't really understand what it all means in technical terms but everyone is much happier tonight. They are keeping on with the chemo which has its own scary issues (she has developed numb feet and hands so far) but at least it is doing the job on the cancer right now. When she first got the news in March/April that she had multiple tumours including in lymph nodes we were all feeling so bad and finding it hard to maintain optimism or to know what we could reasonably hope for. That fact that she was already having pain was so confronting. One thing she was determined to do was to go on a planned family cruise (first one ever for us) in New Zealand in December, and her doctors had remained fairly reassuring that she would be able to come. Today she got that hope back after being feeling pretty shaken last week. I am so thankful for that. I just so want her to have that to look forward to and enjoy, whatever next year might bring. I turn 50 in December, and the trip started out as my big birthday plan, but has become so much more now. It was wonderful that your Mum got to go with your sister to see her wedding dress. My heart goes out to you Jule, that big, big distance is so tough, along with all the other really tough things. Do you have the good supports around you? But I agree, writing here is in itself amazingly helpful. I am glad you have found comfort in it. I hope you have a good sleep and a good day tomorrow. Thanks again, so much, for your kindness. Take care, Gabe

[Jule1971]

Hi Gabe So glad you feeling little better. It sure is a roller coaster for all involved. What great news re tumors, how many more chemo cycles will she have? My mum suffered side effects too and ended up in a wheelchair, but she is slowly learning to walk with a stick and has loved attending the hospice (not a final death hospital) which is full of positive people and energy and they help with her speech and breathing too. How strange our roles and situation is very similar! I felt better after visiting mum in March and too thought I was handling things ok but lost the plot completely really. I do have wonderful friends and a cool boss in my school too (!) but I think unless you have personally dealt with cancer in your immediate family it is hard to understand and even then, it's my mum, my greatest love. As I said writing here and visiting my doctor, no pills, but just to chat has been great help and like you we have so many positive days but I do need to remember the facts. Your wonderful birthday/family holiday sounds amazing and is the goal to focus on I feel, as my sisters wedding is for us. Well I won't go on and on but anytime you need to vent - not even for a reply - here is the spot. We all got through today, and our mums know we love them, I am thankful for that Take care Jule