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posted by paulb
11 September 2019

CUP

Last reply: 5 months ago
Hello to all the beautiful people in this fabulous community. My wife was diagnosed with CUP June 2018 6 months after we got married. She was at the recent seminar in the Red Cow last Sat 7th September, thank you to all who gave their time she enjoyed her day and especially the choir at the end, there wasn't a dry eye leaving. One of the workshops that really has been playing on her mind "Living Life with Metastatic (Secondary) Cancer You see, my wife Davinia has been diagnosed with such CUP metastatic in her lymph nodes? We hear all these stats and figures of 5 years etc. ( I tend to stay away from Dr Google). and it all can be really confusing for her. Over the past 18months, she has been through 47 chemo sessions and 11 radiation sessions, Recently been told that the Avasten with her Chemo this time round has been good and there has been a significant improvement so she has been given 3 months break from chemo but still continue Avasten every 3 weeks. The significant improvement in her since her 3 weeks stay in hospital in June has been two-fold, energy levels coming back, being able to be a mother again dropping our sons to school and catching up with friends etc, getting massive compliments of the wigs she wears and able to pull off the different colours lol!!! Unfortunately, night time is not a good time for her.. Her thoughts run away with her.... I am up with her in the middle of the night most nights when I hear her crying and scared, we even sleep with the light on to try to give her some comfort. It is confusing for me and can be frustrating when I see her doing so well regarding energy levels and her appetite is back to somewhat normal??? I say to her she should be proud of the battle she is winning and the progress she has made this year... Gary Kelly Centre in Drogheda has been tremendous support for her as the hospital (Beaumont) I am trying to be a light of positivity for my wife and our children but can be so hard when she hears the words metastatic which she then implies she doesn't have long left to live??? I hope I can open up a conversation here with both people who are diagnosed and partners who are caring for them. Talk Soon Paul
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posted by Gersy
16 August 2019

Gbm4

Last reply: 6 months ago
Anyone reading this who is also caring for a loved one with a gbm4 diagnosis? It's heartbreaking to watch, in my case it's my husband and best friend. He's my hero. The rapid growth of his tumour in just a month left him in a wheelchair with no mobility on his left side. I am lucky to have home help, I wouldn't survive without it. The hardest thing now is preparing myself for life without him. I have some idea of what to expect as he declines, I can already see a dip in his strength and memory loss returning. He has had 6 weeks of radiation and chemo. That finished at the start of August. The uncertainty is difficult.. No one can tell you when major changes will happen. I pray for the strength to keep smiling for him and I thank God for every day. I miss him already as the disease robs more of his personality, at least he is not in pain. All he wants is to wiggle his toes, and of course stand up and walk. Maybe today I can make him smile. Small steps.
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posted by Beckswhelan
10 August 2019

Grade 4 gbm

Last reply: 6 months ago
Hi all, looking for some advice! My mum has been recently diagnosed with grade 4 brain tumors. She has just completed 3 weeks of radiation and chemo (tablets at home). We haven’t been given a timeline or any useful information from the doctors just that they’ll scan her in a few weeks time. The palliative care have been great calling to the house etc but I have no details on what to expect, how long she will live, what to expect next and when I need to get more help in. Very hard to ask the doctors any questions as can’t chat in front of my mum. We’re all heart broken and have no information or clue who to ask so all suggestions welcome!
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posted by Lmk
08 August 2018

Help/support

Last reply: 1 year ago
Hi, I was hoping that someone may be able to guide me with the following query please? My husband was diagnosed with cholangiocarcinoma last January. He was admitted to hospital literally with no warning signs and spent the best part of 8 months in hospital between chemo, surgery & complications. I was pregnant at the time & had our fourth child in the middle of it all. I have four children now, 7,5,3 &1. We all did our best to get through it at the time and things seemed to be going well. Three months ago, my husband got sick, again very suddenly, and was admitted to hospital due to complications from surgery and he was an inpatient for the last three Months. This time around it has been a lot harder on us all as the kids are older etc. I feel like we all need some help adjusting to our new lives, in particular the kids as the suddenness & uncertainty of our future seems to be having effects on us all. Where do I go for help for us? What options are available for children of their ages? Many thanks for any replies.
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posted by Theseasidegirl
29 July 2018

Steroids & pain patch

Last reply: 1 year ago
Hi, I’m new here 2 years ago my mother was diagnosed with with suspected cancer at the time she’d been in hospital & nursing homes for 6 months following a car accident she opted not to have treatment & to discharge herself. She had no symptoms other than her tummy being very swollen & pain in her lower back, until 4 weeks ago she was great. Suddenly she got unwell and was diagnosed with very high blood pressure. Over the following weeks she was treated for a UTI & was very unwell not eating getting up. The doctor put me in contact with the palliative care team. On Wednesday the breathing was raspy her body cold & she was very unresponsive she’d barley eaten or drank in 4 days. The palliative team put her on steroids & a patch. On Friday she was awake alert and totally back to her old self although a little high. Is this normal I’m scared that I’m getting false hope thinking she’s going to get a few extra months. When in fact the steroids will stop next week & she will go down help again. I’m my mums sole care provider & I’ve no other family. I lost my dad to cancer in March following only 4 weeks of illness. I’m worried I’m holding on to false hope & if it’s only the steroids I’ll be devastated when they stop
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posted by Emmaf
19 May 2018

Child has cancer

Last reply: 1 year ago
Hi there, my twelve year old daughter was diagnosed with a malignant brain cancer and I’ve been really struggling. I’m on a list to see a counselor but in the meantime and trying to live day by day. Feel like I haven’t been able to breathe since she was diagnosed in April. I can’t sleep and everytime I fall asleep I awake immediately afterwards and re-live the horror of what’s going on as fresh as the day she was diagnosed. Help
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posted by Sarah O'Callaghan
05 January 2018

Glioblastoma diagnosis

Last reply: 2 years ago
My husband has recently been diagnosed with an in operable and incurable glioblastoma brain tumor. Since his diagnosis his depression has gotten worse, I am caring for him on my own. We have no family in Ireland they are all back in the UK. I'm struggling to get the support I need my own health as decided to fail me with tonsillitis and laryngitis. He doesn't see me as some one looking out for his best interests he's had a number of incontinence issues of the last few days and gets very aggressive when i try to clean him i have no home help or carers sorted at this point they told me that they have people on there books who have been waiting since November. when I broke down and asked what am I supposed to do, there reply was 'i don't know'. I desperately need help I feel like I'm sinking. I just need someone to talk to. My husband was diagnosed on the 21st of December. But since the summer he's been segregating us from our friends. I have no one to turn to and no one to talk to. I know this may seem selfish of me thinking of my own needs and wants but I'm still only human and I do everything I can for him. Why can't I get the help I need for me. Please be honest and tell me if I'm being selfish. I understand this is hard for him I really do. I watch my caring, kind loving husband disappear and a man I don't know take his place. I know it's hard for him to come to terms with this as well. I'm only 27 and the last year has gone from great to out right cruel. I'm not sure how to handle this. I feel like I'm losing my own identity. Sarah.
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posted by CarrieD
29 November 2016

Dad just diagnosed with small cell lung cancer stage 4

Last reply: 2 years ago
Hi, I'm a little, well a lot sad today, my Dad has been diagnosed with stage four small cell lung cancer. He has no symptoms and went into hospital for something else. Unfortunately, I know a lot about the disease as a dear friend's sister has it and I've read a lot about it. I'm scared. My Dad knows nothing about how potentially serious it can be and he thinks he'll beat this with chemo. We're going to discuss his treatment on Friday and I don't know how he'll cope with the devastation if they tell him it's terminal (and my poor Mammy). Any advice on how I can help him through this? I'm being really positive when I'm around them but I'm petrified. Is there any hope for this type of cancer? I'm sick of the doctors already asking me if I'm medical when I ask them questions, they also said chemo is their only option, why can't they do radiation or immunotherapy? Any advice as well on what's ahead would be appreciated and how I can balance spending time with my own family (in Dublin), my family at home (Kerry) and work (Dublin). Obviously I want to spend as much time as I possibly can with my Dad and family. I have two young children as well who seemingly have been acting up since I've been home. I miss them terribly (and I have only been in Kerry six days). Any help would be so appreciated.
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posted by Dave_M
17 March 2017

Support / Counselling after loss

Last reply: 2 years ago
Hi all, I want to accompany my dad to some form of support/counselling but am not sure of the options available. My mum suffered from cancer for 5 years and lost her battle in November 2015. Since then, my dad has not sought any support but is ready now. Are there groups or sessions delivered anywhere in Dublin for people who've lost a loved one to cancer? Any advice would be greatly appreciated.
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posted by bchubby
03 February 2017

Post biopsy & diagnosis distress

Hi, Asking on behalf of my wife, who is strong and wonderful, but struggling with some aspects of this new world we have been thrown into. Has anyone any experience of distress when showering/bathing after a breast biopsy & diagnosis. Biopsy was two weeks ago and we now have a confirmed diagnosis. Managed to get one set of steristrips off last night but it is very distressing and upsetting and every time we are showering th emotional aspect of things is very difficult for her. Anything we can do? Or try? This seems like an amazing forum full of strong, inspirational people.
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