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Introduction

15 May 2017 21:13

Hi all, I'm new here. My Mum was diagnosed with stage four bile duct and ovarian cancer.Shes had 2 cycles of chemo but its bn stopped due to her being so weak and they have said that she is palliative and basically there is nothing more they can do for her apart from keeping her comfortable. I feel so helpless that I can't do anything and it's killing me seeing her in pain.Is there anyone in a similar situation? I am 28 and Mum is only 51 x

Re: Introduction

16 May 2017 03:12 in response to Shabby898

 

Hi,

Your feelings are perfectly natural. I nursed my mum with cancer for 12 years. She initially had breast cancer, but in the latter stages it was in , liver, lungs, bone and brain. I was about your age at the time and had two young children, wjho adored their gran, as did I.

Watching her deteriorate before my eyes was heart-breaking. Truth is that there was nothing that I could do to ease her pain, other than ensure that she was given her medication at the appropriate times. I believe that she found some solace in the fact that I was by her side all the time. We discussed things that she wanted to do before she died and managed to make some good memories, despite the gravity of her illness.

You are better to try not to dwell on the ‘terminal’ part of her diagnosis, but to deal with her needs on a day to day basis. The enormity of coping with

A terminal diagnosis on top of dealing with her immediate needs is just too much to cope with.

Do you have any friends or relations to help share the burden? We are always here for you. Please let us know how things are going and I’m sure that someone will get back to you.

Kind regards,

Jolamine xx

Re: Introduction

16 May 2017 09:30 in response to Jolamine

The similarities between us is quite amazing.I also have two young children,my oldest is very much "Nanny's boy" and he has gone from seeing his Nanny everyday to hardly seeing her.It's hard to explain to a 3 year old that Nanny cant hold him because shes so weak.My youngest is 18 mnths.I am also doing an access course as Mum had encouraged me to gt back into education and then we literally gt the diagnosis a few months into it.We have an extensive extended family who male sure she is never alone.I do find it hard not being there as much as I would like due to not being able to get childcare all the time for my boys.I am neither here nor there at the minute.Literally was just at hospital with her until 2am last night as we had to get her admitted again for her ascites drain.Emotionally it is really taking it out of me but I am glad I have found this forum it gives me a chance to unload to someobe wgo really inderstands what I am going through.Sorry for this extra long post x

Re: Introduction

16 May 2017 17:14 in response to Shabby898

 

Hi there,

We have even more in common than you think. I too was undertaking a post grad university course at the time.

I am sorry to hear that your mum is back in hospital for her Ascites. Are they managing to drain the fluid well? We had terrible bother with mum in that the nurses couldn’t stop the drain from leaking. I visited her on several occasions to find her shivering in a cold wet bed. The nurses didn’t seem to bother about her, that is with the exception of one young nurse.

She was marvellous and, but for her, I am convinced that my mum might well have died of Pneumonia. This young nurse came in one morning and said that she had been thinking about mum’s condition and she thought that she had come up with a solution. She had and mum improved by leaps and bounds after that.

I am glad to hear that you have a large extended family to reduce the burden of visiting at every turn. My children were young teenagers at the time, but caring for a young family as well as your mum must be really draining for you.

I didn’t find this site until after I myself developed Cancer, but I have found it invaluable and, I am sure that you will too.

It is great to be able to talk to others who have experienced what you are going through without constantly upsetting family members by talking about it. Have you explained to your 3 year old that Nanny is ‘sick’.  My daughter was 2 when her great-gran died. The two of them had a great rapport despite a 92 year age gap. We didn’t feel that she would understand what was happening, so we said nothing. We went to her funeral, but we didn’t bring the children. My daughter has always said that she would have wanted to know and even to be at the funeral to say her final goodbye. With the benefit of hindsight, and, Heaven forbid, if I had to go through this again, I would certainly let her know that great-gran wasn’t very well. This might have prepared her for the end a little better. Heigh ho, we do what we think is best at the time!

It’s not surprising that you feel emotionally drained. Somehow or other you find the energy to keep going. You’re probably running on Adrenaline most of the time, but you must also be physically drained if you were still at the hospital until after 2.00am this morning. Sadly the children are still too young to let you have a lie in this morning, so it’s no wonder that you feel shattered.

I am always here whenever you want to chat.

Kind regards,

Jolamine xx

Re: Introduction

17 May 2017 04:52 in response to Shabby898

Hi Shabby898, 

I'm sorry to hear about your mom. I can relate to some of what you're feeling. My dad was diagnosed with Stage 4 Prostate cancer last summer, and I just keep hoping that one day the cancer could just disappear. I am 26 and my dad is 63, so it's difficult to know that he may not live as long as I had thought he would. I just wanted you to know that even though I'm not in the same situation, I can realte to a lot of the things that you ahve said. If you ever need to talk, I'm always here. My dad is still relatively healthy, or appears to be, but there have been some scares that we have had to live through this past year since he has been diagnosed. It seems so unfair that the ones who seem to be the most selfless and loving get this disease. My dad is the most amazing person I know, so it's devastating to think about him having cancer. I feel helpless as well, just know that you aren't alone. Sending you and your family positive thoughts. 

Re: Introduction

17 May 2017 09:27 in response to Shabby898

Hello, 

I'm so sorry to hear about your poor mum. There really isn't much anyone can say or do including yourself. I think just being by her side is enough and letting her know how much you love her and how special she is to you. They often say that the last thing to go is the brain so even if someone appears to be sleeping it is likely they can hear you. So never stop talking to her even if you think she probably isn't listening. 

I haven't quite reached that stage yet but it's heading that direction. I'm 28 too, my dad has terminal bowel cancer which has spread to his lungs and liver, it's in the pineal gland in the brain and a week ago they found a mass behind his left eye. He's deteoriated so much in the last 7 weeks. Part of him is still there but the other part is a completely different person who isn't in touch with reality. It's such an upsetting time. I feel helpless too like I should be doing more but there isn't much I can do. Sitting beside him, talking to him, bringing him a few treats that he can still enjoy...makes me feel like I'm doing something. Even making sure he drinks, propping his pillows up, helping him sit up, checking he is OK. He's currently in hospital at the moment. He needs 24 hour care. We are really worried about how long he may have as it's progressed really quick. I have a little boy whose 3 years old and he keeps me going even when I feel like giving up. It is emotionally as well as physically draining on everyone. My dad was diagnosed 2 years ago and was doing reasonably well until 7 weeks ago. Cancer really keeps you guessing. 

I'm here if you ever need a chat or even a rant x 

Re: Introduction

19 May 2017 10:44 in response to Jolamine

Hi Jolamine,

Yes we seem to have had that problem with the leakage too,at one point they were trying to send her home whilst she was still leaking and telling me that it was only excess fluid coming out.I reminded them that should it get infected at home I would be holding them responsible and surprise surprise they kept her in.

With regards to my son I have told him that Nanny is not well and she needs to sleep alot so naturally now he wont ask to go as much as he knows Nanny needs quiet to sleep but you can see in his face he misses her.

My Mum is currently back in hospital and has had a rocky few days,I have moved her to another hospital trust as the care was abysmal in the first one,but its got yo a point where she is virtuually asleep all the time and barely awake.She struggles to open her eyes but I still sit with her just to let her know she is not alone x

Re: Introduction

19 May 2017 10:47 in response to GiftThePresent

Hi GiftThePresent,

I'm sorry to hear about your Dad, it's horrible to see our parents in pain especially when we envisage them growing into their old age. The helpless feeling is the worst because you feel like you are letting them down,when in reality it is the nature of the horrible disease to rob them of their life in front of you. I suppose all we can do is just be with them and keep positive.Keep strong, anf likewise I am always here for a chat x

Re: Introduction

19 May 2017 10:54 in response to Butterfly89

Hi Butterfly89,

Sorry to hear about your Dad. My mum too has been deteriorating quite rapidly over these last few weeks.Her ascites is becoming more recurrant and theres fluid in her lungs now too. Yesterday was quite scary as we honestly thought we had lost her.I sat by her and held her hand only to be told by her brother to leave her hand because I was disturbing her.You can imagine my response to him. It annoys me how her siblings are thinking they are the only ones in pain but I know it wont help Mum bickering with them so I jyst ignore them now and like you I stay with her when I can but I feel guilty having to continually leave my kids with others just so I can go up the hospital. Thankyou for showing me there is support out there and I am not alone.I think when you first gt the diagnosis and theres nobody around you that can relate, thats when it becomes easy to become resentful and isolated.Keep strong and know that I am also here for you too. May God make this struggle easy for our parents x

Re: Introduction

19 May 2017 11:30 in response to Shabby898

Hello, I can so relate to your pain. My husband is younger that me and had his initial colorectal cancer four and a half years ago. In January 2015 we found out that it had reappeared in his brain. He has had surgery, two types of chemotherapy, three bouts of gamma knife surgery and has now been written off as 'fast track' which is the latest euphemism for terminal.

He is in a nursing home now because the local Hospice no longer do end of life care, only short term respite and assessment. Watching him die bit by bit, day by day is agonising, a kind of prolonged torture with only one possible outcome.

Re: Introduction

20 May 2017 01:20 in response to Lynne_J

Hi Lynne_J,

Firstly I am so sorry to hear of your husband. You can relate to how I'm feeling because we are both having to watch a major part of hearts and lives slip away before our very eyes and we cannot do anything.It's so frustrating and emotionally draining. I can offer you my support and say I am here whenever you need a chat x

Re: Introduction

20 May 2017 21:06 in response to Shabby898

You must have been so frightened when you thought you had almost lost her. She's your mum and if you want to stay with her, sit beside her, hold her hand or talk to her then you do so. There's not harm in it and you're not disturbing her. Time is vital now and it isn't to be wasted so ignore what others say, that's how I would be. Try not to feel guilty about leaving your kids with others, I'm sure those who are looking after them understand the situation. I always leave my little boy when I go and see my dad but I know he's in safe hands and it's more enjoyable for him than sitting in a hospital. No you're right it's hard to find people around you who can relate through the same situation. There's not a lot of support given to families affected. X

Re: Introduction

21 May 2017 07:13 in response to Shabby898
Thank you are right, it is frustrating and emotionally draining. I've been running on empty for months now and don't know how I get up to face another day, but I do. Life's a ***** and then you die so they say but having to watch somebody else die is the cruellest of tortures.

Re: Introduction

22 May 2017 01:29 in response to Shabby898

 

 

Hi again,

I am sorry to hear that you have had to move your mum to a different hospital, but hope that she is getting better care now. It is tragic that  you have to move someone who is so desperately ill yet, I am sure that you are glad that you did it.

I am also sorry to hear that you had a problem with her drain. Surely there must be a solution to such a simple problem, especially when you think of the number of people who now need this treatment?

I am glad to hear that you have managed to gently prepare your son. Children are very matter of fact at this stage.

I went through the same sleepy stage with mum. I was by her side and talking to her alll the time and I felt that she got some solace from that. Doctors say that patients who are unconscious can still hear what you say and , I felt that this was the case with mum - besides, it was all that I could do at the time and I felt selfishly, that I had to be able to give her a sense of familiarity in an otherwise alien environment.

It must be difficult to arrange babysitters so that you can be with her as much as possible. Don't feel guilty about this. I'm sure that your children are being well looked after and that whoever you have taking care of them will be only too glad to take some of the burden off your shoulders, given the circumstances. Remember that you only have a finite time left with your mum and you have no idea how long this is likely to be, so you have to make the most of it.

It is so hard to watch a loved one suffering, knowing that there is nothing that you can do to ease the pain. I wouldn't worry about your siblings at present - do what you feel is right for your mum. That way you won't have any additional regrets after she has gone.  

Isn't it strange how the doctor decided to keep your mum in hospital when you put the responsibility back with the hospital if anything went amiss? You may not feel that you are doing much to help her but what would happen if you weren't there? She would still be in the first hospital or at home and, by the sound of things neither would be the best solution for your mum.

I remember just how quickly my mum deteriorated at the end and wouldn't wish that on anyone.I hope that you find the strength to carry on for as long as needed.

Thinking of uou both,

Jolamine xx