mum finally diagnosed.

[rachelqt]

Hi Louie

Thankgod my dad is now in a better place, a little weak but getting better everyday. We had such a frightening wkend. Still cant believe what we were told that Saturday morning. They are still unsure as of where the blood came from. He also had blood in his stools. After a number of tests nothing has been found. He is now on steriods and this has helped his appetite and is starting to eat. The planned permanent stent is going ahead in the morning. We are hoping we can get him home next week, he is so browned off at this stage! So i think the next step will be to meet the oncologist and get the chemo started. He has great support from the Marie Curie and Macmillan nurses, they seem to pick his mood up. I think he opens up to them rather than us. He still cant mention the word 'cancer'. So fingers crossed we are on the way up!

How are you Louie? How is things with your mum and dad? I really hope things have eased for you, I know you had a very hard week last. Rachel xx

[louiepc]

Hiya,

Things had been "ok" this week. Mum didn't have chemo on Monday, because she was booked in for another procedure to drain her tummy tomorrow.

Unfortunately things have got quite bad in the last few hours. She started getting a temp this afternoon, flu like symptoms, hot/cold etc, Dad rang me about 6 this eve and I said to take her temp, when he rang next it was between 38-39, he then rang about an hour later, he has called the ambulence and they were rushing her in.

He has insisted that I don't go, and he will keep me updated throughout the night It has come on so quickly, we are shocked at how quick she's gone down hill again.

I am glad things are looking a lot better your side, so pleased your dad can have his stent put in tomorrow, he will pick up a lot better once he has that done. What a horrible weekend you had, such a rollercoaster of emotion, it's so draining isn't it?

Anyway take care, If I get a chance I will try and post an update on mum tomorrow.

louie xxx

[rachelqt]

Hi Louie

Just to let you know im thinking about you all today. I hope your mum can get some medical treatment to get the temp down and is more stable today. Your poor dad must be feeling it after all he has been through. Your right its draining, its almost now you expect something to get in the way of things once its all going smoothly! Have your mum in my prayers. Talk soon Rachel xx

[louiepc]

Mum had a rough night in hospital, she was in a great deal of pain and distress and had to have an emergency draining procedure again. They have seen the consultant today and apparently the amount of fluid in her stomach is due to the size of the tumour. She is on an iv drip for fluids and antibiotics, and looks a lot better than she did during the night.

They have said that the chemo should make it less frequent, and if it still is as frequent with the same amount of fluid coming out each time, then the chemo isn't working. She will probably miss next weeks dose, to recuperate. Also the fluid that came out is the wrong colour, so that has been sent off for analysis.

We've been told this will happen again, apparently she can get an infection through the lack of mobility and all of a sudden her body reacts to something and will go into an instant infection. So worrying. Thank god Dad rang the hospital when he did. So on top of making sure that no one is around her who is poorly, her own body can suddenly infect itself. Argghhhhh.

I am going up the hosp now and will be with her most of the afternoon.

[rachelqt]

Hi Louie

Any update on your mum? What about the colour of the fluid, have they got to the bottom of that yet? Suppose with most hospitals it always seems forever waiting on results. It is just unreal for your body to infect itself. Although with this cancer nothing would surprise me. I really hope its not the end of the chemo for your mum.

Think of you all...Rachel xx

[louiepc]

Hi

the antibiotics that mum is on have kicked in and she is definately looking better. We got some results of the fluid on her tummy and it was a bug that was in it, they don't know at the moment what type of bug, but they have also taken bloods and trying to culture that so they can see if her blood has got infected or if it is contained to her tummy.

It hit me like a tonne of bricks last night, she is so tiny, my son is 7 and she is not much bigger than him now, I got her dressed and her ribs are showing now, it is painful to see. I love her so much and hate to see her like this. My Dad asked me to talk to the local church today too, they have been talking about burial plots etc, not the nicest of jobs to do, but at the moment I can deal with it as Mum is still here. A bit surreal really.

I spent this afternoon with her, and the Eleanor people turned up, very nice people, the doctor was really informative and helpful. Mum will be in all weekend, and she's seeing her oncologist on Monday, I'd be very surprised if she has chemo on monday, because they need to make sure that the infection has completely gone. Until she gets a scan they wont know if the chemo's working - so finger's crossed it is.

I am exhausted, going to go and chill out, kids are in bed - phew, need a cuppa and then got to get ready for the morning as we are all off to Legoland with the beavers, something that was booked earlier on in the year, will probably regret going, but the kids are excited.

How's things with your Dad Rachel? Has he had his stent op? Is he home from hospital yet? I hope things have improved and that your life is a little bit calmer.

Love and prayers to everyone,

louie xxx

[rachelqt]

Ack Louie, your mum is having a bad time of it. My heart is truly breaking for you as i know where your coming from, I know what that ache in your heart is like. Lets just hope and pray its only a set back and she can get back to her chemo. That must be so awful for you to see your mum so frail. I know last saturday when we thought dad was going, it just was the most horrendous feeling ever. Its the sense of helplessness and having no control over this illness that is the hardest for us all. We just have to take day by day.

I live in Northern Ireland and I pursume the Eleanor people are like the Marie Curie Nurses over here. These people are so good, not only for your mum but for you too. Honestly if you feel things getting too much, lean on them for emotional support.

My dads stent went really well, so the doctors are hoping to let him out on Monday! They had him climbing stairs today to see how he manages. He got up them just about and he was exhausted after. So he is still quite weak. I feel were lucky as he was usually 17 stone but now 14 stone. So he has still got some weight to stand by him. Like yourself i also feel sad as he is not the man he was 3 months ago. It is sad to see them deteriorate.

Go and enjoy your day tomorrow with the kids! It will probably do you the world of good to have a change of scenery and something to take your mind off everything for a while.

Look after yourself and chin up.. Rachel xx

[rachelqt]

Hi Louie

How is things with your mum now? Hope she is ok.

Take care Rachel xx

[louiepc]

Hi Rachel

Mum's not very good. I saw her this morning, she is very dehydrated, I have requested that she have an IV drip put back in to hydrate her. Her tummy is enormous again, she had 6 litres taken from it last Thurs am, and she is having it re-done again either today or tomorrow.

They found out that the bacteria that was in her tummy is normally only located in the bowel. They said this was very unusual because this would normally indicate a perforated bowel, but that she was not showing the signs of distress or acute illness of a perforation. Which, horribly, leads me to suspect, has the cancer spread to her bowel? I am going to contact her consultant tomorrow, as I want to request that she be re-scanned.

I am so desperately sad, I look at her and she is so frail and ill, and I honestly feel that she is fading away from us. I am holding it together in front of the kids, and feel that if I start crying I am not going to stop.

I even think that she is giving up now, she has said she was in so much pain last week, she could have quite easily given up.

God I hate this bloody disease, she has gone from a beautiful, young looking, independent woman to a little old lady who is very ill, in the space of a few months.

Thanks for your thoughts, and please prayer for her as she needs a heck of a lot of strength at the moment.

Louie xxx

[rachelqt]

Hi Louie

Im feel so sorry for you Louie, your going through an awful time. I will definitely pray that your mum gets over this hurdle and it has not spread anywhere else. I can understand why you would think the worst, but try not to give up hope. We were at rock bottom just over a week ago and feel like all the prayers we got has given us dad back for another while.

Your mum will always be an amazing and wonderful lady in good and bad health, she is the bravest of us all for what she is going through! I can only imagine how weary she must feel with this battle. Thankgod she has wonderful family like you and your dad to be by her side!

I hope you can get this scan done today and hopfully get some answers.

Im thinking of you all and sending prayers your way...

Stay hopeful...Rachel xxx

[CFF]

Hi Louie,

Gosh you really are going through the mill aren't you.

I agree with Rachel about not giving up hope - try not to second guess too much about the cancer spreading as it will give you more to worry about. And do try and get a few moments how ever difficult it may seem have a big sob, it might be a small release to get you through the next bit.

I completely understand what it's like to live with the never ending anxiety and worry and fear of it all. You're being really brave and doing all the right things by requesting scans etc.

Stay strong, thinking of you

x

[louiepc]

Mum has been drained today, Dad said she had deteriorated since yesterday.

I have emailed the contact that we have and she agrees that a re-scan would be the best option, and she has also given me the consultants contact number, he is on holiday this week, but she seemed to think that we could meet with the consultant and have a chat about mum's case.

I am finding it very hard to be positive tonight, I have cried so much, I feel like throwing up. I have an absolutely awful feeling that I'm losing Mum, and I don't know what to do, there's nothing that I can do - I have lost people before, but I have never had this ache before, I hope and prayer that a miracle happens, and maybe she will be sent home for the weekend - but I honestly don't think time is on our side anymore.

I know you are all going through or have been through the same thing, and I am sorry to burden you with what I am feeling, but I don't know who else to talk to.

[lynbo]

Hi Louie

Well, I think you should ask for the scan to be done straight away? Never mind waiting till the consultant back from their holiday.

They will have someone who can look at the results, as this is making you ill with worry, it's understandable your upset, I feel for you, but the waiting and worrying is the worse part.

Get a good rest and go to the hospital and ask to speak with wherever is in charge with your mum at this time.

Thinking of you

Xxxx

[louiepc]

We got the worse news yesterday.

The cancer has suddenly got very aggressive and spread rapidly.

All chemo is to be stopped. All treatment, apart from pain relief and pallative care is to be stopped.

I asked the nurse, should I get my brothers down. She said sooner rather than later.

My mum is dying before my eyes, and there is nothing I can do to help her.

I'm going to be spending today with her, my brothers are on call, one is coming tonight and one tomorrow. I feel so sick, the ache is horrendous. I bathed her yesterday, made her feel really comfortable, and I think she really appreciated it.

I'm already missing my hour long phone calls with her, how on earth do you go the rest of your life not talking to them again. How on earth do you deal with this?

My kids know that nanny is really poorly now, and my eldest has asked to see her, but he's only 7, I think he is too young, and I want him to remember his lovely nanny the way she was and not now. Am I wrong?

The only thing I can keep doing is pray and hope to god, that she doesn't suffer anymore, please god make it quick for her and as painless as possible.

[rachelqt]

Louie I am so sad for you, I cant help crying reading this.

Your mum will find comfort that she has such a wonderful daugther and family who will be by her side. You will get the strength from somewhere to carry you through.

Im sure the ache is horrendous, a mothers love is special, it will never leave you and you live her love with your own children.

I pray she will not suffer, im sure the hospital will make sure of that.

When we went through the trauma of thinking dad was leaving us, I asked him if he would like to see my two girls and he said no, he did not want them to see him sick. So maybe it is best your son remember his nanny with all his lovely memories of her.

Love Rachel xx

[lynbo]

Hi Louie

I'm sorry to read your news, I know you will do everything you can for your lovely mother, because something just kind of kicks in, and really, your the best person for the job, you love her, know her, and she loves you and trusts you.

I think your right with your decision about your children, my brother in law let our niece (then 9) see my Andy and she's having counselling now.

You are doing a marvelous job, it's hard and very sad, but you are.

I'm sending lots of love to you xxxx

[PCUK Nurse Jeni]

Hi Louie,

So sorry to hear about your mum deteriorating so quickly. It is very difficult to deal with the rapidity of this diseases sometimes.

Regarding your son, then I would talk with your Macmillan nurse about this. You can ask to see the hospital palliative care nurse, who will help to speak with your children, and counsel them about the death. I am not sure whether keeping them away helps? He has, after all, asked himself. Children are very resilient, not like adults. they do not dwell on images in the same fashion a grown up would. I have dealt with children who have lost parents, and they get on with life, and find a way of coping. Talk, Talk, Talk -it is very important. One thing children do remember is being kept away or shut off from what is going on, when really, they have their own reasons for wanting to be around. Very small children will not remember much, or understand much. At 7, your son may very well have his own thoughts, like wanting to say goodbye. In my experience, it is not necessary to "protect" children from death and dying. it is a part of life that they learn about somehow. As long as it is balanced, and not an unhealthy focus on death, and that you keep communicating to them, he should be ok.

Hope this helps,

Jeni.

[CFF]

Hi Louie,

So so sorry - I know it's so so scary and distressing and devastating.

The most important thing is to make sure that your mum is as comfortable as possible.

Can understand the difficulty with your son. My father passed away 2.5 weeks ago and my nephew was right there with us (11 years old) when he died in my arms and he's been so strong and brave and I think it has helped him to spend so much time with his grandad even when he was poorly. I agree with Jeni, and from my own experiences when my grandmother died when I was young and I felt very 'shut out' in the last few days (although of course I'm sure my parents were thinking about what was best for me), when I was so close to her and had spent so much time with her.

It will mean and feel something different to your son than it does to you. My youngest niece ( saw my dad less when he was poorly but still spent alot of time with him in the days before he died and I think this has also helped her come to terms with it and give him a hug even when she didn't know what to say. They have been brilliant and all wrote tributes and poems at his funeral and my dads grandson was even able to read this out himself in front of 200 people.

There is no easy way to do this. But you are there for your mum and she will know you are there and that you love her.

it's amazing the strength we find when we need to.

Sending you love, email whenever you need to feel like people understand.

xx

[louiepc]

Thank you so much everyone for your kind words of support.

I have spent all day with mum. I have spoken to the Ellenor Hospice nurse - she is lovely, and - away from mum I asked to have it straight.

Basically things are like this - mum has weeks, not months, she has deteriorated so much that unfortunately the end is in the not too distant future.

We have requested that she go home as soon as possible. All the procedures are being put in place for her to be cared at home, that way she has the love and support of her family around her 24/7 and she is in her own home, everything that she wants.

She is having a scan on Mon, but both the oncologist consultant and the pallative care nurses, know what to expect.

My Dad is in pieces, he has now been told he needs a heart bypass - he has decided that he is not having this operation until after mum has gone, as he feels she will go whilst he is in hospital. What a complete nightmare - I cannot believe that my lovely mum is going downhill so damm fast, but my dad has to have major surgery on top of this.

I think I am running on auto at the moment - tried to eat - I know I need to keep my strength up as my kids and my dad and mum need me to be strong, but this is the hardest thing I have ever had to do. I feel like i have aged 10 years in a few days and on the other hand I feel like a little girl who needs a cuddle from her mum.

once again thanks for the support - you are the best!

xxx

[CFF]

Hi Louie,

Of course there's no great timing for any of this but it is especially harsh for your dad to be expecting surgery too.

All you can do at the moment is be there with your mum and dad and do everything you're already doing. You're doing the right thing in getting your mum home as soon as possible and she'll take comfort in the fact that you're with her. All I can say is say everything you want to to her. You mentioned you have brothers travelling to see you - hope this gives you some comfort I know it can be difficult when it feels as if you're carrying the 'responsibility' on your shoulders.

I haven't got any other advice other than you are being so strong and brave in such tough times and you will be ok.

xxx

[laura]

hello louie, have been away for a week, and just catching up on posts, so very sorry that your situation has deteriorated so very quickly, x

you have so much to deal with, and my thought are with you and your family,i hope you get the help and support you need at this time and that mum gets the comfort and support that she deserves.

i see that you haven't posted for a while, obviously hoping you are ok?

look after yourself, hugs to you all, laura

[louiepc]

Hi everyone,

Thanks for your support and thoughts.

Mum is still in hospital, she is getting more strength each day, which is great. We have started taking food in to her as the hospital food is dia.

She is having a permanent drain put in tomorrow, which will be a big help, and finger's crossed she will be able to come home on Saturday. The results of the scan is that it has spread into her stomach.

All the equipment that she will need is now in place at home, the carer's are ready to look after her morning and night, which will give my Dad a bit of a break, and I will be there as much as I can.

Mum has had a big blip tonight - one of the other ladies on the ward came over to mum saying that she will be able to be treated and get over her cancer. Mum is now in tears as it has hit home that nothing can be done for her. I feel so sad, I have cried heaps this week, and am absolultely exhausted. Lots of people keep saying how well I'm doing and I'm being very strong, but I honestly don't feel it. I shut the front door and just crumble.

My son saw Mum on Sunday, and he has asked some questions, but is really pleased that he saw her. In fact my youngest and I had lunch with mum today and she didn't seem at all fazed. Hopefully with mum being home, the kids can pop round and see her at home and it will be better than the hospital.

Chat soon

louie xxxx

[rachelqt]

Hello Louie,

Glad to hear from you. Im sure it is an emotionally draining time for you all. Glad your mum is gaining a bit more strength. Thankgod you are also getting some support for her at home. Im sure the spread into her stomach was the reason for the fluid build ups.

Its such an awful illness and i dread the day when it takes hold over dad.

You are doing a great job holding it together, letting it all out is normal and can be a good release.

Your in my thoughts..Look after yourself.. Rachel xx

[louiepc]

Hi everyone

Mum had her drain fitted today, and it went well. Unfortunately, though, she is not allowed home until possibly Wed next week - grrrrr.

The care/nursing staff that are going to be treating her at home need to be trained on how to change the bag, and I think we need to be trained too. I understand this, but it's nearly 3 weeks since she's been in hospital and we are just desperate to get her home.

We all had lunch together yesterday, which was wonderful, Dad has managed to take her to the hospital canteen for the last few lunch times, so my youngest daughter and I met up with one of my brothers and mum and dad and had a really nice lunch. Quality times together.

I hope you are all ok.

It is now half term, so pleased that no school runs for a week, and we can hopefully have some fun times with the kids.

Take care.

louie xxx

[rachelqt]

Hello Louie

I will have my fingers crossed your mum gets home on Wednesday! The running to the hospital can take its toll.. Delighted you all had some quality time, it means everything. You take care..Rachel xx