mum finally diagnosed.

[louiepc]

Hi, I'm new on here, I feel so sad. My mum has been ill for about 2 years, with the runs, pains etc, had so many tests, all the time coming back without a diagnosis, always being told "don't worry it's definately not cancer". Two months ago, I noticed how jaundiced she was and made her go to the docs, she was admitted into hospital and had a stent put in her bile duct. She had some biopsys taken at the same time, the following day she had to go to another hospital, on her own, my dad was refused to go with her. She was told straight to the point that she has a mass, that its inoperable, and not much point of having chemo. Mum was in complete shock, and distress, she said "am i going to die then" and the doc said "oh yes, you don't have long". My mum then had to travel back to the other hospital without anyone that loves or cares for her. I feel so angry at the way this diagnosis was given, no humility, or compassion.

Anyway this was start of a complete pendulum of emotions. We were told the next day, by my mum's consultant that the test results were not positive, that she had to have a further procedure, endoscopic biopsy, she was then discharged from hosp, and it was 3 weeks before she had this further biopsy. During this time, mum received a copy of a letter from the dr, who gave her the diagnosis that he had sent to her GP, saying she "may" have cancer. May? May? that is a big difference than the death sentence that he had given to her 3 week priors. A ray of hope, some light that wasnt so dark and grey. Maybe it could be ok?

She had the endoscopic biopsy, had to wait nearly 3 weeks, before the hospital called her and said, oh you need to have a further test, where the biopsy is taken from a needle in the tummy. They then said that the previous test was negative. Does that mean mum has no cancer. another ray of hope. maybe, just maybe, we can breath a sigh of relief.

NO, she had the biopsy, she had the results on wed. She has cancer, the mass is at the head of the pancreas and constricting the vascular vein, it has gone into lymph nodes. completely inoperable. They said she can start chemo, but this is to shrink not cure.

During this, her weight had plummeted to 8 stone, she started putting weight on, good we all thought. her tummy now looks like she is expecting a baby and her legs are so swollen. Two days before she got her diagnosis confirmed, she had blood red bands around both ankles, she went to dr, was told its a bacteria infection, but the idiot didnt give her antibiotics. On Wed eve, same day as her confirmation, she was feverish, high temp, shivering, feeling sick etc etc. She was sent to hosp on Thurs, she jaundice again, had bloods taken and told that the doc would call her in the morn, she went home slept from 5.30pm thurs until 12midday Fri. Very ill. She was rushed to hosp. On an iv drip.

I saw her yesterday and I didnt recognise her, she was a shadow of herself, like a shell, no light in her eyes. She has a bacterial infection, she cannot start any chemo until this infection has been bought under control. I am so frightened, it is happening so fast, and I don't think we will have her very long. To top it all my dad is really not coping, he has angina, he's been having bad chest pains and was up most of the night with a chest and arm pains. he didn't ring me cos he thought i have too much on my plate!!! told him at least the kids can be looked after in the middle of the night. the way this is going im going to end up losing both parents. My brothers and I are in complete pieces and are trying to be strong for each other but it is so hard.

im sorry to ramble on, i have never felt this sad., (((((

[lynbo]

Dear louiepc

My heart goes out to you, how awful and really shocking the way you have been treated, I think that you should keep a diary of your mums condition, and write all questions/answers for consultants.

I found this a help.

It's terrible the time scale of all the tests and diagnosis?

So.... From now, try and be strong, as you and your brothers need to be the voice, as it sounds like your poor dad isn't coping - which is understandable.

Be firm, ring the oncologists secretary, and find out what the next step is, because, your mum will need support in her hospital visits, the other hospital should not have said what they did, especially as all tests hadn't been done?

Is your mum in pain? As she will need that controlling first off, so, ring the hospital and don't be afraid to ask questions.

Hope it all goes ok.

Keep in touch

Lynbo

Xxxxxx

[Nardobd]

Hi Louie

Oh this makes me so angry!!! At the very least the hospital could have let your Mum have someone with her.

Hopefully the IV antibiotics will have started working by now and it won't be long before your Mum is able to start chemo. You will find you need to push the hospital (in my experience anyway) and keep reminding them of what Mum needs. A good step is to ask that she is assigned a Clinical Nurse Specialist (CNSs are nurses which have specific experience in a particular disease or part of the body and they are often a good liaison between the patient/family and the doctors). As Lyn says, make notes. Ask when things will be done and make sure they know you are noting it. If it doesn't happen on time tell them you need to know why. Be firm and assertive but not aggressive. Make sure they are keeping her hydrated - if she's able to drink encourage her to drink as much as she can.

It's completely understandable that Dad isn't coping - when my husband was diagnosed in Feb 2009 (also with inoperable pc because it was near a major artery) it was like my world crashed around me. If you can encourage him to look after himself by reminding him that Mum needs him strong and well then do.

If it's any consolation, my husband was told "months not years" in Feb 2009 and is still with us! I know that many on these forums haven't been so lucky but if your Mum can fight and the chemo is effective on her (everyone reacts differently) then there is hope.

Don't worry about rambling ...we've all been there. Ask us any questions you like and if you need more support than the forum can offer, then contact Jeni, PCUK's support nurse. Her contact details are at the top of every forum.

Let us know how Mum is getting on.

Nicki

[louiepc]

I saw Mum today, she seemed a lot brighter, moving around more, and she had a bit of spark back in her eyes. The drip has been taken out. Apparently she now has to go on either a low or no protein diet. Her tummy is enormous though, and apparently her dr thinks that her intestines have narrowed and that it is making it harder for food to pass through properly. She is in a bit of discomfort, at the top of her tummy, she was trying to stretch herself.

She hasn't even seen an oncologist yet. He came back from holiday today. We spoke to the nurse and doctor and said that we want her to be seen by the oncologist asap, so treatment can start. Apparently he is on the ward on thurs, so we said we want her seen on Thurs, and that way treatment is that little bit further along. But sometimes its like talking to a brick wall. I am going up again tomorrow eve and then wed so I will "request" the this doctor be sent to mum asap. She is not having the stent replaced now as her consultant feels that her jaundice has gone and that it is working effectively. She will be in hospital until at least thurs.

On an up note - and I know some of you may think "daft cow" but I was chatting to mum today and a tiny white feather floated in through the window and landed near us. I think its a sign the angels are looking after us.

My Dad went to the docs today and had an ECG, he needs to see his GP tomorrow as it was abnormal. He has 3 stents in his right hand side of the heart, but the ECG came back saying the left hand side is abnormal. I have told him he needs to get this dealt with as he has to be fit to deal with mum.

Thanks for looking/listening, I feel a lot calmer now, seeing a little bit of light in mum's eyes and a smile on her face is worth its weight in gold. I have been brave today and not cried at all, that is so tiring and brings me down too. Will let you know how things go on Thurs.

xx

[louiepc]

I feel quite numb today, don't know why, nothing much has changed, but I just feel very drained by everything. Mum is still in hospital, she has just had a six hour procedure to drain her tummy, they took 10 litres out of her. Is this normal? Has anyone heard of this procedure before?, and is it likely to happen again? I didn't see her today, Dad was with her most of the day, he says she is looking so old now. The thing about my mum is that she has always looked at least 10 years younger than her age, and now she is looking a lot older - she's 68.

A friend popped round today to give me moral support, but then came out with this little nugget, "oh well, it doesn't really matter how you guys feel, its you mum who's going to be feeling worse, cos its happening to her". Yes, I can understand that, but we, as her family, are watching her decline, and will eventually watch her leave us. We will be the ones left that have to explain it to three young children who will wonder why Nanny is no longer around. I don't think I should really listen too much to what people say, I spose, some people just speak before they think and then say things like "stay positive" or "stay strong", but in one sense, where's the posititivity? There is a massive black cloud hanging over our heads, and there is no getting past it. Mum is not going to get any better, at some point or another she is going to go from this awful awful disease.

Sorry feeling down, and blue today.

[endee]

Hi Louiepc

So sorry you are having a bad day. It is so hard to remain strong all the time, your feelings are normal. Friends don't always think before they speak and sometimes we would wish they said nothing but of course we know they mean well. The procedure your Mum had is entirely normal. 10ltrs is a lot of fluid and it has to be drained slowly to prevent the body going into shock but the procedure itself is nothing to worry about.

Nothing we can do will every prepare us for what may happen to our loved ones. My Mum passed away on July 26th after being unwell for only 4 weeks and just 1 week after diagnosis. I also have 2 young children and once it became obvious that Mum was not going to beat this I began to prepare my boys for this. None of us could believe though how quickly this awful disease took Mum from us. I was entirely truthful with them at all times about how poorly she was etc. I must admit because of the speed that Mum deteriorated I never actually used the word Cancer. I decided that these days Cancer can affect so many people but alot of it can be cured if caught early enough that God forbid if anyone else in the family should get a form of it I did not want them to think that it meant only 2 ish weeks to live.

I think it is very hard for anyone to understand, including some of the medical profession what a cruel and rapid disease pc can be. I suppose my positivety changed from positive that there could be a solution to be being positive that I would do my utmost to ensure that whatever care Mum needed (in our case pallative) she would not only get it but it would be the best.

There are many people you can talk to about your feelings. Sometimes talking to a stranger is easier than feeling you are being a burden to people you know.

You are all in my thoughts at this very difficult time and I hope that with the dawning of a new day your strength returns and you can spend quality time with your Mum.

endee xx

i have rattled on a bit but hope some of it at least makes sense. x

[louiepc]

Thanks Endee,

I really appreciate you replying, and I am very sorry to hear about your Mum. It's terrible isn't it?

I spoke to my eldest yesterday, he's nearly 7. I didn't say the word cancer (my sister in law had breast cancer last year, and thankfully got over it), just said, Nanny has a lump called a tumour, hopefully will have chemo, which may make her sick and tired, but I did say that unfortunately at some point Nanny would be going to heaven. We lost our nephew 5 months ago, so he understood this and got very upset. I have told him we have to make every time we see Nanny really special, lots of hugs and laughter and love. My girls are 4 and 2 1/2 and to be honest I really don't think they will understand what is going on, I have not mentioned anything to them yet, only that Nanny is in hospital and is poorly.

I have said a similar thing to my brothers about the positive note. As long as we can make her as comfortable as possible, and let her have happy thoughts. I actually do quite a good job of being positive and staying strong when i'm around mum and dad, its when I'm on my own and all the thoughts are in my head. This particular friend was asking me questions and then when it looked like i was going to get upset, she kept saying "stay strong", well on thinking about it, she obv doesn't really want me to speak to her, and probably can't handle it. I am learning who I can talk to, and some people have completely surprised me, I don't know them overly well, and they have been really kind.

It's my son's birthday on Sat and I had a family bbq planned for Sun, thinking this would probably be the last one that she would be around for, and now i'm hoping that she can make it out of hospital. I know it sounds silly, but I feel that I need to have a recording of her voice, not talking about pc or anything medical, just normal day to day stuff. I'm so worried that I will forget what she sounds like. I know it's daft, we lost my Nan 5 years ago and I remember her voice, but it's something in my head that I feel I need to get done.

Blimey serious rambling today. I am off out with a friend and the kids today, some chill out time, and happy memories for the kids. I am seeing her tonight, looking forward to that, and hopefully tomorrow she will finally see the oncologist. I will keep you posted.

louie x

[louiepc]

Saw Mum tonight, her temp back up again, she seemed very distracted and not herself. I read to her tonight. Cannot remember the last time I did that, but we both enjoyed it, even if it was my son's "Lion, Witch and the Wardrobe". I doubt that she will be allowed home tomorrow, but she is seeing her consultant in the morning and hopefully "fingers crossed" the oncologist. I asked whether she could be allowed to come home for a few hours on Sun, for my son's bbq, maybe, up to the docs, came the reply. Don't want to appear self=centred, i'm not, but i'm prob being desperate, I realise the way she is at the mo, I don't think she will be hear next year, so any special dates with the family are to be treasured.

My little girl asked today, can we go to the pictures with Nanny, watch a fairy movie and get my nails painted? Oh my love, I, and Nanny would love to do that. Let's hope she gets over this blip and can do these lovely things. Am I being daft, i feel like im trying to grasp at every possible memory, but they feel like they are being moved, just slightly out of reach every time. I noticed one thing I am doing everytime I see or speak to her, is tell her i love her. Even though we are close family and always cuddled, we very rarely told each other those little words. Now more than ever, they are so important. It is something I tell my husband and kids every single day, and I now say the same thing to Mum every single day.

Love you mum, wish to god this wasn't happening, wish things were different, but unfortunately they can't, I will try my hardest to make you laugh, smile and feel as happy and as comfortable as you can be.

your ever loving daughter - p xxxx

[RSK]

Keep your chin up, my dad is going through similar and I feel so helpless, but the lovely people on this site keep you going with their caring messages and understanding. All we can hope for is in the future medicine progresses enougth to stop others suffering. I also find rambling on this page gets things of my chest and makes it a little easier so don't worry about that! RSK

[lynbo]

Dear louiepc

Everything you have said I can relate to, I lost my husband - Andy, aug 23rd 2010, so it's nearly a year.

He was only poorly 7 weeks, I cared for him myself, he was 39. I'm 35.

I also wanted to take photo's, video's, every opportunity I got.

Most I deleted in end, as he was do fragile looking it just upset me.

But I know what yr saying, I always told him I loved him, and, I think, you are doing a great job in the way yr handling it all. There are no rules, and it's terrible, and when yr on yr own it's all you can think about.

I too found that people who I did not imagine - have been a tower of strength, and people who were our close famy and friends have amazed me at their lack of care and support.

Take care

Hope to hear how things go this weekend

Lynbo

Xxxxx

[louiepc]

hi, mum seen both her consultant and oncologist today. Was told by the consultant, that she needs to have another ercp tomorrow (fri) and maybe to have a stent put in a different place, as she started swelling again today, and feeling sick quite a lot of the time. she is also have a full body scan tomorrow. from the oncologist she was told that its in the lymph nodes, but thankfully hasnt spread to any other organ - she has to get over this illness before chemo can start. Once it starts, prob sept, it will be one lot of chemo a week for three months, then rechecked and then another three month batch. Apparently she can't have the really strong chemo as she is not strong enough for it. So we are looking at hopefully having her around for christmas, and maybe jan/feb (which would be lovely as she may see her 5th grandchild born).

My emotions are all over the place, getting angry at my husband, for no real reason, and then sitting here crying alone in the dark. i know it's stupid, but i feel like im going mad.

The doc did say that if she was well enough over the weekend she could come out for a few hrs, but my dad thinks that it will be too much for her.

I'm sorry going on about myself, Lynbo and RSK, how are you? Sorry that its nearly a year for you Lynbo, its terrible. Two months ago i had never heard of this illness, then when mum got ill, i thought it must be quite rare, but i don;t think it is, it seems a lot of people suffer with it.

will let you know how weekend goes. thoughts are with everyone out there who's going/been through the same thing.

louie

xx

[louiepc]

Mum's coming home for the weekend - WOOO HOOOO, I am so pleased.

She has a date for chemo to start - 2 Sept. Got to make sure that she is fit and well and that we have 2 weeks to do some nice things (hopefully), before it starts.

I got a slight temp, got to get over it so I don't pass anything onto mum.

[ali]

Hi Louie

I have been following your story just have not posted

Great news for the weekend--have fun.

I joined the end of june (my mum went to sleep forever on sun 12th June after only being properly diagnosed Tues 7th June ).

Cannot believe the " new people " that have come on here since then.

Most with very similar stories and vague symptoms over a period of time.

Also , some with stories of inadequate hospital care---which is a great pity in this day and age.

Anyway take care and enjoy having your mum out.

Helen

xxx

[endee]

I am so pleased for you and your family. This weekend will hopefully be fantastic and full of joy rather than sadness. It sounds like you also need to remember to look after yourself as well as everyone else. Next 2 weeks need to be for rest and preparation as well as quality family time.

I wish you all the best and hope with all my heart your Mum responds and gets to spend as long as is possible with such a loving family.

Endee

xx

[Nardobd]

Wow! Louie, so pleased for you. I hope you share a fantastic weekend with your Mum.

Nicki

[lynbo]

Dear Louie

Have a really loving weekend, talk lots, love lots, and enjoy yr time

Love to all the family

Xxxxxx

[louiepc]

Hi all,

Ahh it was a fab, fab, fab weekend. Mum managed about 7 hours at ours yesterday, which is amazing, we had all our family around, plenty of laughing and joking and no tears. Good memories were made, and lots of photos and video were taken. She's been discharged from hospital today.

thanks for all your best wishes. xxx

[louiepc]

Mum has had quite a good week, seems to have got over her infection, which is great. Unfortunately at the moment I can't see her, as I'm quite poorly as are my kids, they've all got colds and I have a kidney infection. The last thing I want is to give her another infection.

She sees her oncologist this afternoon, has the prep talk before chemo starts next Fri.

I had the most awful dream last night, and I know it was only a dream, but I have woken up feeling very sad and tearful. It was the day of mum's funeral, I remember it was for 3pm, and for some stupid reason I had to go to the shops and one thing and another I was late for her funeral, didn't get there till 3.30 and I missed saying goodbye to my mum. i know it wouldn't happen in reallife, but its another punch in the stomach to say, yep mum will be going in the not too distant future.

I was being very practical yesterday and have written out all the emergency numbers that I need, and for childcare too, I think I have probably upset some ppl, cos I asked them if its ok to put them on the list and they got all offended, saying it goes without saying. I said that last thing I need is for someone to say no, when the time comes, so i;ve given them the option.

rambling again, sorry guys.

hope everyone is ok xxx

[lynbo]

Dear louiepc

Don't worry about rambling, and your dreams, well it's normal if that makes any sense?

I used to dream all sorts when Andy was here and wake feeling so unhappy and guilty, but you somehow just snap out of it?

You will be feeling the strain of not seeing your mum at the min with you being poorly, but yr doing the right thing, trying to avoid passing on infection.

Hope you recover over the weekend

Limbo

Xxxxx

[endee]

Hi Louiepc

I hope by now you are feeling better! I am sure you offended no-one asking for there assistance. As friends we all presume that we would be there for everyone but there is nothing wrong with preparing people that your time to call upon them may come sooner rather than later.

As for your dream, do not worry we all have them. They continue afterwards as well!!

Thoughts are with you all for the journey you and your Mum are about to embark on. I do hope that she gains some quality time from the treatment.

Endee

x

[louiepc]

hi

Mum had her appointment with the chemo nurse on Friday, she seems quite happy now that she has all the facts about what will happen, when and how etc. She is going to be on gemcitabine. she has also found out that she is stage 2. Which i think is better than we all thought, although no time scale has been told, we are hoping that she may have longer than previously thought.

We were at my brother's 40th yesterday, but unfortunately Mum was quite poorly and had to go to bed for a few hours. she is looking so old and frail, I really hope that with the chemo she may regain a bit of strength afterwards, I hate seeing her like this.

Anyway she starts chemo this Friday, hopefully she wont suffer too badly from it. Will keep you all posted.

Hope everyone is ok.

Louie xxx

[lynbo]

Hi Louie

Well, I bet you can't wait for Friday, treatment begins, will it be half hour sessions once a week?

Let's hope things are on the up, and your Mum regains some strength.

Stay positive

Love Lynne xx

[Nardobd]

Hi Louie

Glad to hear slightly more positive news. Fingers crossed that the chemo helps and that your Mum suffers minimal side-effects.

Nicki

[louiepc]

hi everyone

feeling lots of mixed emotions tonight, between worry, nervousness, excitement and trepediation, mum starts her chemo tomorrow, and in one way I am so relieved that finally she will be starting her treatment, but I am also so worried about how she will take to it, side effects etc.

will keep you posted.

xx

[PCUK Nurse Jeni]

Hi Louie,

If there are any questions you would like to know once your mum starts chemo, please email the support email address, and we can help, hopefully.

Jeni.