topic I live in Australian - Terminal Mum lives in UK - Feel so far away? in Coping with a loved one's cancer

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

Jule1971 — Wed, 17 Jun 2015 07:47:44 GMT

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.

Re: I live in Australian - Terminal Mum lives in UK - Feel ...

Jule1971 — Thu, 02 Jul 2015 01:58:28 GMT

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

Re: I live in Australian - Terminal Mum lives in UK - Feel ...

little_stitcher — Thu, 02 Jul 2015 02:01:41 GMT

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

Re: I live in Australian - Terminal Mum lives in UK - Feel ...

Jules2 — Wed, 08 Jul 2015 09:01:07 GMT

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

Re: I live in Australian - Terminal Mum lives in UK - Feel ...

Jule1971 — Thu, 09 Jul 2015 03:48:06 GMT

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

Re: I live in Australian - Terminal Mum lives in UK - Feel ...

gabiwun — Mon, 17 Aug 2015 15:58:40 GMT

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.

Re: I live in Australian - Terminal Mum lives in UK - Feel ...

Jule1971 — Mon, 17 Aug 2015 21:27:33 GMT

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

Re: I live in Australian - Terminal Mum lives in UK - Feel ...

Jule1971 — Tue, 18 Aug 2015 05:55:09 GMT

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

Re: I live in Australian - Terminal Mum lives in UK - Feel ...

gabiwun — Tue, 18 Aug 2015 14:53:59 GMT

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

Re: I live in Australian - Terminal Mum lives in UK - Feel ...

Jule1971 — Wed, 19 Aug 2015 10:04:40 GMT

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

Re: I live in Australian - Terminal Mum lives in UK - Feel ...

gabiwun — Thu, 20 Aug 2015 21:29:01 GMT

Hi Jule, We do seem to have heaps in common. 🙂 My mum is also the love of my life. My daughter too, in a different way, of course, but I often have the irrational feeling that nobody could understand how much I love my mum and how much she means to me. No matter that I am middle aged, I still feel like that little kid, running into her arms when she got home from work. I don't know that they have said how many more cycles. She had 9 initially and had had one or two more before they stopped due to the numbness. She thinks that has improved a bit but it is still a worry for sure. At least for now we can be really happy with the good results. My sister and my niece and Mum posted some photos on whats ap when they were out celebrating after the Dr appointment and they were all just beaming. Here's to the good days for us all and for the good people who are there on good days and bad. All my best wishes, Gabe

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Voodoolady — Tue, 01 Sep 2015 02:33:17 GMT

Hi Jule My mother was given a terminal prognosis in July. I'm about 12 hours drive away from her so not quite a far as you. My parents and I emigrated here back in 1965 and I am an only child. My mother has breast, lung and bone cancer. The latter being the one they can't fix. My father was also recently treated for Bladder cancer and has his first review after chemotherapy this month. (Fingers crossed for that but prognosis is better). We have never had cancer in the family prior to my mother getting breast cancer for the first time 16 years ago. Unfortunately what she thought was scar tissue from her partial mastectomy turned out to be the return of the breast cancer and by the time it was discovered it had metastasized to the spine and a secondary inoperable cancer had appeared in the lung. At the moment all they can do is treat her for pain (she has just spent another week in hospital to sort out her pain meds as the ones she was on weren't doing anything for her). The oncologist says "up to two years" but in this recent visit to hospital they think they have found another cancer in her other lung. I keep asking her if she needs me to come up and her reply is always "not yet". There is no one else..her best friend died from lung cancer (and Mum nursed her) about 8 years ago. Dad does the best he can but she gets impatient and lashes out at him at times. I think more because of the pain than really being angry with him. Personally I don't know how, what to feel. Mum and I have never been close but over the past 5 years (prior to diagnosis) we have become good friends again. We talk daily on the phone now. Do you use Skype to speak to your mother? Anyway, this is the first time I have written anything here. Part of me wants to cry but Mum doesn't need that. I try to be upbeat and funny and strong for her but it's very hard. Like you I don't know when I should go and be with her. I'm in Victoria and she is in upper North NSW. I have a husband and chickens and I'm currently studying for my Bachelor of Art in Fine Art. I find this helps me focus on something other than my mother. I think it's good that your mother has "dates" to live for. For my mother it's my Dad's 80th and their 60th Wedding anniversary. We talk about that a lot. Regards Jackie

Re: I live in Australian - Terminal Mum lives in UK - Feel ...

Jule1971 — Tue, 01 Sep 2015 10:52:48 GMT

Hi Jackie Thanks for writing and sharing. I truly believe this page helped me so much by just getting it all out there and writing it down for complete strangers to read who knew exactly what I was going thru! I hope it helped a little. There is nothing any of us can say except I understand all that you have wrote. You will decide what is best for you to do.. When to see your mum. When to cry and shout and scream. When to be involved with other tasks so that you don't think about your mum. Then feel bad that you didn't think about your mum. That's what this page is, in my opinion, for the people without cancer but who are still suffering. You mention pain meds for your mum, no other treatments? It's great that you chat so much, I message my mum every day and we talk Thursday's via FaceTime or Skype. Don't beat yourself up by trying to be upbeat. I am the joker of the family. I can always make mum laugh and tried to spend our phone calls whilst chatting about cancer, treatment, wigs etc to be fun and silly and positive. I realized it was a problem when I came off the phone and sobbed for an hour straight. We are all human. That was the day I wrote here. When are the special dates in your family? 60th wedding anniversary wow! I can't wait till we go back to see mum although how bittersweet that visit will be I'm sure... Please write again even if just to keep us posted and always happy to just read/listen. I know sometimes I don't need any answers just someone to say they understand. Sending much love and blessings to you all xx Jule x

Re: I live in Australian - Terminal Mum lives in UK - Feel ...

Voodoolady — Tue, 01 Sep 2015 11:07:13 GMT

Hi Jule No no other treatment. There is nothing they can really do that will help. They can try to remove what's left of her breast and also remove part of her lung but unfortunately the cancer in her spine is aggressive and inoperable. It was decided that her quality of life recovering from these major surgeries was not worth putting her through as the outcome would still be the same. As the bone cancer is already in 4-6 places in her spine she can't have radiation therapy or chemo. They did try her on hormone therapy (apparently that help strengthen the bone which can become brittle) She's off that now and will be having weekly infusions (not sure of what) to help the bones stay stronger. Other than that it's just about keeping the pain bearable. Thank you for your reply...it does help to be able to write about things. It's not really a facebook share if you know what I mean Regards Jackie

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Jule1971 — Tue, 01 Sep 2015 11:21:41 GMT

I hear you Jackie x Feel free to post whenever, whatever... I do! Jule x

Re: I live in Australian - Terminal Mum lives in UK - Feel ...

Jule1971 — Tue, 22 Sep 2015 13:57:21 GMT

Just had one of the calls I been dreading. My mum is going to (albeit it wonderful) hospice. They are concerned with her continued sickness, lack of eating, fatigue, speech... you name it really. This ride is terrible I want to get off. I have no words actually, just lots and lots of tears today x

Re: I live in Australian - Terminal Mum lives in UK - Feel ...

gabiwun — Tue, 22 Sep 2015 20:37:16 GMT

Hi hun, I'm so sorry to hear that you are having such a sad time. I know that the thought of her being well cared for and hopefully benefiting from that cannot really comfort you for the fact that it has become necessary. It's a shit of a ride alright. Hope your people around you are holding on to you tightly through this moment. Xx Gabe.

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grrlboiwonder — Wed, 19 Oct 2016 00:51:21 GMT

Hi Julie - I am new to this site and have just seen your thread of messages and your latest news. I can relate to feeling and being so far away from my own family in the UK, albeit reversed for me as my grandmother is with me here and all our family are in England or Italy. I however remembered two years ago when I was told my father was diagnosed with terminal cancer, which spurred my grandmother and I to fly back to the UK for a final visit. Being so far away, not having support of family, not being there with them...I get that. I feel really alone despite family from the UK sending emails and phoning me, words sometimes aren't enough. I read your latest update about your Mum going to hospice. Great news for her to get that support and care she needs, but what about you - how are you feeling about all of this? No words and just lots of tears is telling enough about how difficult this is. Don't we all wish we lived a little bit closer to those we love and care about Xx