Hi Nichard,

Welcome to this friendly and supportive site and thank you for sharing your story with us on here. It sounds like your mother is not only a determined but a very brave fighting woman. I lost my mother seven years ago to breast cancer which spread to her brain. I have also lost my grandmother and an aunt to the same thing while I have had prostate cancer and have made a good recovery from it. Just remember the estimate of three to six months is only an estimate and our parents are a tough breed and often delight in proving the experts wrong.

It's not easy watching this evil disease attacking someone we love dearly. We all try to put on a brave face and make out we're okay but the reality is so different. So often people say although they have supportive family and friends around them, they find it so difficult in talking to them as they are worried about increasing the fears and worries others may have.. It's at times like cancer imposes a communication blackout on families. Someone here in the past few day also stated, people who have not had any experience of cancer either themselves or in the family don't know how to react or what to say. That is why this site is so good for people know what to say  and how to react.

You ask, can anyone help you understand what to expect. I can only tell you about my own experience and it doesn't mean the same will happen in your mother case. My mother slowly got worse and worse until in the end, she was just lying in the bed almost unaware of her surroundings, but this was only for a short while. But it was so painful to see my mother who had always been such a fit and active woman reduced to this state.

Please keep us updated and anytime you want to talk or unload, rant or rage, this is the place to do it for people on here will not judge you and will understand what your are going through and will try to offer help and support to you.

Sending best wishes to you, Brian

Hi Brian, thank you for your message, i am very sorry to read about the way cancer has affected you and your family. Also, very well done on beating prostate cancer, I have not had this evil disease as you quite rightly name it, but i am living in fear of it now.

My mam just came out of hospital today after being in with an infection she caught due to her immune system being so low. I think i wrote in my first post that she was scheduled to start a new chemotherapy drug today, but after her oncologist came and spoke to us before she was discharged she informed us that she wanted my mam to stop having treatment for 3 weeks so she could monitor her energy levels as well as her blood levels.

She was telling us that some people are worse off when they have chemo and how some people manage to live the rest of the time they have left as well as they could if they were still having treatment. Basically she said that the risk of infection was to high if she had chemo and she wanted her to stay off it for a while. We have to go back in three weeks to see if they are going to resume treatment.

My mam didnt take it so well becaue she thinks if they stop her treatment and she isnt having anything, that she will die straight away.

It was so hard for me explaning that this may not be the case. Of course seeing her cry just made me cry with her which wasnt good.

Its hard for me because shes my mam and I have always felt like my mam was superwoman who would never get ill, now i just feel like im constantly having the wind knocked out of me.

its just absolutely heartbreaking knowing she is going do die

Thanks for reading my post

Nichola

Hi Nichola

I already see that the lovely Brian has been in touch and I just wanted to add a welcome to this forum which has been very supportive as I live daily knowing that my husband will one day be taken by this rotten cancer (he was diagnosed as incurable with lung membrane cancer in Feb 2012).  I only wanted to mention that my husband too was offered  a holding chemo but only managed half a course due to his body not being able to cope with the side effects and we followed the advice of his specialist and stopped treatment. This was last Nov/Dec.  He has since had palliative support and is on painkillers.  Though often very tired (and sleeping a lot some days) he has regained some of the weight he lost due to sickness during chemo and is still living day to day.  It is definitely not easy watching those you love suffering and it does affect the whole family but come here and share your feelings (so many understand and can listen and try and offer support though sadly we cannot change things. Never worry about crying with/without the people you care about, emotions are a rollercoaster (just like life) and it often helps to let it out - I feel like its my release valve as without the tears I feel my head would explode with the fears/worries/frustrations that the cancer brings with it.  Wishing you a peaceful day.Jules

Hi Nichola,

I have just seen your message, and wanted to get in touch as someone who is going through a very similar experience to you.  My mum is currently in a hospice, having been diagnosed back in January.  Unfortunately, none of her treatments worked, we always knew there was a very small chance as her cancer is very aggressive and only a tiny percentage beat it.  But despite the poor odds, she has had a few months of being well, but we are also know in the situation where she is trying to fight off an infection picked up by having virtually no immune system.

It's a cruel one isn;t it, that the thing that is supposed to help them has made them worse...can't really get my head around it.  But our brave Mums wanted to try everything to have longer with us, and we have to take comfort from that.

I hope your Mum is being as well looked after as mine - moving her from a hospital to the hospice was the best thing, she is still having a certain amount of treatment (not chemo) but is in a calm and restful environment, and the level of care is impeccable.  Macmillan are still involved to an extent, and they have always been wonderful.  Not sure if your Mum has contact but would strongly recommend it.

As for what to expect, I try not to think about it too much, and neither does Mum.  The hospice has shown us though that whatever happens, they will make the experience as calm and pain free for Mum, and in a different way for us.  Mum has a Palliative care consultant who visits her daily, and he has been able to calm most of her fears and worries, and again I would strongly recommend your Mum asking for this if she feels it is time.

I will be thinking of you, we would not wish this on anyone, but you will find strength to help your mum and get through this.  Please stay in touch if it would help.

All the very best,

Catherine x

Hi Catherine,

Thank you for responding to my post, it is nice to hear from someone who can relate to what I am going through. Although I wish neither of us were in this position, because you are right it is cruel knowing the thing that is supposed to make them better is making our mums worse :-(

If you don't mind me asking, what kind of cancer is it which your mam has? Both our mums are true fighters and are so brave, knowing the treatment had a small percentage of working and still trying it anyway. I don't think I would personally have the courage or the fight to be so brave! It must be a very hard time for you, knowing your mam is really ill but not wanting anything to happen to her. We tend to think of our mams as being superwomen who are never going to die, when the harsh reality is that this evil disease is taking them away from us.

Because of the cancer my mam has - inflammatory breast cancer, we have a district nurse who visits her 3 times a week at home to change and dress her breast. This cancer is just horrible, I had seen nothing like it in my entire life. Because of the kind it is, it grows outwards as well as internally, so it protrudes through my mams skin, making it exceptionally painful :-(

The nurse was the one who noticed my mam had an infection in her other breast and had her admitted to hospital only last week. We both knew it was the tumor spreading across because her breast looks just like the one did when the tumor first appeared unfortunately :-( when she was in hospital, we were told my mam had contracted a bug and thats what caused the infection, she was put on intrevenous antibiotics. The thing that shocked me and made it really hit home was when her oncologist told us that the bug was one which everyone has on there hands and is usually harmless, but to my mam it was serious because of her virtually zero immune system. My mam is home now though, still feeling a little weak due to the infection, she is still on antibiotics until the end of may, but her appetite has picked up again and she is still managing to get out and about despite being really really tired :-(

We have Macmillan nurses who are very supportive, they are always there at appointments with her oncologist for that extra support. It is good that they are there sometimes because when we get bad news my mam gets upset and cries and even though I try to reasure her and calm her down I often get in a state because seeing my mam cry breaks my heart knowing  I can't do anything to help her when she has always been there to make me better when im ill, it makes me feel very guilty :-(

Thank you for telling me about the hospice, it is something my mam has been unsure of because neither of us know about the level of care in there. My mam is very wary of going in one when the time comes because she knows she won't be able to do the things she loves like visiting friends and things, but it is something that we need to do unfortunately.

Is a hospice just like a hospital? are there proper visiting times or can people stay all day? I ask those questions because like I say I have no idea about what a hospice is like.

Take Care

Love Nichola

x

Hi again,

Thanks for your reply, and I am glad you got in touch as hope it helps in some small way.

My Mum has pancreatic cancer, which has now spread quite rapidly to other parts of her body - it is the spread to her lungs which is causing her so many issues, and that is where she now has an infection.  The stats for pancreatic cancer are very poor, so it was a massive shock when we found out, not that a cancer diagnosis is ever easy, but this was pretty much diagnosed as terminal from the outset which was hard to accept.

So many of your words rang true with me, about our Mums being superwomen, and never imagining life without them.  I have got myself into a better place now about how I think about it all, but in my bad moments, I feel myself crumbling with the injustice of it all - why my Mum, why this cancer etc.

Your Mum's illness sounds very distressing, for her and those close to her and I really hope she continues to be well cared for and is made as comfortable as possible.  I am glad Macmillan are involved, as the nurses find time to look after patient and family and are a wonderful support.

As for the hospice, the one my Mum is in is linked to a medical unit, so there are doctors on duty to continue hospital treatment but in a very different environment.  It is small, only 11 beds, but the staff to patient ratio is almost 1:1.  I had very pre-conceived ideas about hospices, but on being there a lot this last week, have seen a very different side - yes, there are some patients who are there for end of life care, but many are there for respite care, and I have seen a couple go home already this week.  There is a massive difference to the hospital - visiting times are open (they ask you to respect a general rest period for an hour in the afternoon) and have lots of family rooms/areas with books, toys andgames for children, TV etc.  They will provide meals for family (for a small charge).  The staff consists of nurses and a number of volunteers who make themselves available to help in any way required.  The hospice is set in beautiful gardens, so when the sun has shone, someone has always taken Mum out in a wheelchair to get some air.  It really has been a wonderul place to be in the circumstances.

I hope this helps a little, I will be back in touch soon, but am going to go now and get some rest as am leaving early in the morning to travel up and see Mum (we live near Newbury and Mum is in Lincoln).  As before, please feel free to stay in touch if it helps,

Take care, thinking of you and your Mum,

Catherine x

Hi Nichola

I cannot match te wonderful advice of the people who have already answered, but I do want to give you a virtual hug xx

My Mum was diagnosed with terminal oesophagus cancer a month ago, stage 4.... and we have been told we will be lucky if we have a family christmas...the heartache is horrendous isn't it.... But the not knowing makes it worse.

I'm sorry to read of your suffering too.

Hugs, Sara x

Hi Catherine :-)

It was very reassuring to read about your experience of the hospice your mam is in, it seems they are really taking care of her and making her comfortable which is all you can expect and want right now isnt it.

As well as taking care of patients, it seems they are taking care of there family as well which is lovely because we go through it with our mums as well don't we, its great that they offer that support to us as well.

It made me sad to read that you mum has pancreatic cancer, although I didn't know him very well, my uncle passed away with pancreatic cancer in 2010, he wasn't in a hospice though, he was only in a normal general hospital. I witnessed his pain and disorientation and I must say it was very very distressing, hopefully the hospice has your mums pain under control, maybe she doesn't have pain which would be great for her and a big comfort for you and your family.

It is a huge shock when doctors/oncologists tell you that the cancer is terminal, I know first hand how that felt. I felt like my whole world had suddenly stopped spinning, especially when we were initially told that my mum had a skin infection and not cancer, even though she had breast cancer in 1994!

After being diagnosed we were told after a few rounds of chemo she could have had surgery to remove her breast...but because she took so long to be diagnosed, the tumor had already attached itself to her chest wall making it inoperable.

Throughout the earlier treatment though, the word terminal never entered my mind because we were told my mam would be having a mastectomy :-(

I have so many mixed emotions about her diagnosis. She was given a 1 month course of antibiotics to 'get rid' of the skin infection and then she wa given another months course.

2 months went by without a diagnosis, no biopsys were taken only a mammogram which showed nothing.

I feel so angry at the time it took to diagnose her because I think "What if she was diagnosed earlier?" "What if she had started treatment just one month earlier?"

I could go on forever with the what ifs, nothing i going to change the outcome unfortunately. I am taking it exceptionally hard because my mam is all I have, it has always just been myself and her against everyone else.

On a positive note to end, I ran the Race for Life today :-) I'm hoping the money I raised will help research find a cure for this evil disease.

Best Wishes

Nichola

x

Hi Sazzle,

Thank you for getting in touch and thanks a lot for the virtual hug, it was very much needed!

Although this site is great for chatting to people who are in a similar situation to myself, it is still so upsetting to read peoples stories knowing that other people have the weight of the world on there shoulders also. It is a horrible thing to say but I feel so jealous and I envy the people who are getting on with there lives without a single care in the world when we are all going through this torture. I just want to scream but that would be exceptionally selfish, the world doesn't stop when we are down and out, although it sure feels like it does!

I had never known much about oesophagus cancer until i joined this site and read up on it, now there is information on it everywhere I go. I can't imagine how you and your mum must have felt when you were told it was terminal pretty much straight away, that must have been dreadful :-( i'm so sorry to see you go through this as well. You just have to cling onto that little bit of hope that your mum will still be here to celebrate another christmas with you and her family, positive thinking goes a long way so my mam tells me, she is more positive than I am! I obviously hope your mam is not in any pain or discomfort.

My brave, lovely mam got diagnosed in August 2012 and we were told it was terminal in early December just after my 24th birthday we were told 3-6 months. the pain and hurt I felt was like nothing I had ever experienced.

My Fiance at the time (now husband), pulled out all the stops to make christmas day last year very special for my mam and me because we just don't know if my mum is going to be here this christmas.

We had lots of presents to open, he made us a beautiful lunch, and we played games and just spent a day of quality time together. I got a little upset of course, but I hid it well making excuses to use the bathroom so not to make my mam upset.

You are so right when you say it is the not knowing that makes it worse. I honestly believe the not knowing is the hardest thing to get your head around. My mam is outlived the expectations of her oncologist but I am so so scared and utterly terrified of what is going to happen.

Stay strong for yourself and your mam

Nichola

x