mum finally diagnosed.

[louiepc]

Hi all

Mum had her first bout of chemo yesterday, it's an iv drip for 1 hour. For the first hour after she was fine and felt really good. She then felt very nausous and extremely tired. She has pretty much slept most of today and not eaten anything.

Dad popped round and I'm trying to cheer him up, but its very hard to do when he's almost breaking down, with worry.

I just hope that this is a small side effect and she will be back to "normal" soon.

I hope everyone is well, have a lovely weekend and try and enjoy the sun.

Louie xxx

[CFF]

Hi Louie -

When my dad went for chemo I had a strange sense of relief (and hope) I think because it feels as if 'something' is getting done that should make a difference. Think chemo can be stressful all round though managing expectations, worrying about the side effects - with my dad it was very up and down so take each day as it comes.

My dad is quite poorly at the moment and is having a short spell in hospital so they can monitor his pain better and do some more tests. Yesterday I spoke to work colleagues and friends about perhaps needing some support in future and it does take it does help to let people know more about what's going on and that you'll need some help. Good to reach out - can be all too easy to try and take everything on.

Keeping my fingers crossed that the chemo does some real good for your mum.

x

[louiepc]

Hi CFF

Sorry to hear your Dad is in hospital, hopefully they can give him something else to help manage the pain. I've just read all your posts, crikey you've all been through so much. It is a terrible illness, it makes you feel so helpless watching someone you love go through it.

Good idea about asking for help, I did that last week, made a list of phone numbers and emergency childcare, stuck them on a cupboard door, come the time I need them, I will probably forget how to use my phone.

Anyway, on an up note - spoke to mum this afternoon and she felt better, she can't believe how much she has slept, and she's managed to eat a little, which is good, so hopefully, this side effect will be only for the first day of treatment and then she's ok. fingers crossed.

Take care, hope your Dad comes home soon.

Louie xxx

[CFF]

Thanks Louie -

Really good news your mum is eating and sleeping x

Speaking of side effects we have had a very hectic weekend at the hospital. They've started dad on ketamine for the pain which has resulted in a number of side effects and had a distressed call from him at 2am this morning which involved a trip to the hospital to settle him (fortunately I'm not too far away) and then he called again at 6am to complain that they wouldn't let him have a shower! Not surprising when he couldn't work out he was still in hospital.

Spent most of the day with him and the good thing is the ketamine seems to be helping with the pain and the weakness in his legs. Hopefully the side effects will improve. It's so hard to see him so confused.

Must remember there are as many good days as there are bad, we've just had a couple of bad ones!

Am having glass of red wine to recover and early night.

Take care - hope you have a good week

xx

[louiepc]

Hi everyone,

How are you all?

CFF how's your Dad? Is he still in hospital?

Mum has now had her second bout of chemo, it's awful, completely wipes about 2 days out of her life. She had slightly different symptoms this week, extremely high temp, 40 plus, hallucinations, 36 hours continual sleep. Is there anything that we can ask for the symptoms not to be so severe?

I feel so helpless, I have not been able to see either of my parents as have been poorly again and cannot risk Mum catching anything. I hear my Dad crying on the phone saying that he doesn't know what to do, when Mum says she's dying (this is during the period of high temps), or when she is so fast asleep and still he is actually checking whether she is still breathing. It has crossed both our minds, whether the chemo is any good, what if she goes through six months of this and then still find that its no gain?

I had been very strong, and then 2 nights ago it started again and have spent most of the last 48 hours in tears. It didn't help when someone at the church said (and I know they meant well), but they said that God will hear all our prayers and answer them. Well, I don't think he's heard mine, I feel like he's giving it to me with both barrels at the moment, what with my Dad being poorly too.

Sorry to ramble - all I seem to do at the mo, and to be honest this is the only place that I can really talk about whats on my mind, as no one else really understands.

louie x

[jessica5x5]

hi louie,my thoughts are with you and going thro these emotions too. my mam was diagnosed in may, eventually after having to go private, as been ill since last sept, the usual ibs and diverticulitis was diagnosed, but not happy with this as my mum was in agony plus 4 stone weight loss. we got referred and within less than 2 wk it was revealled there was a 3cm mass on head of pancreas and spotting to liver. my mam went in for liver biopsy and in this routine proceedure they managed to puncture her gall bladder and she was left rolling in agony for app 3 min before any pain relief. my mam has not got over this trauma which then the results came bk negative so she had to go thro it all again, to be handed somebodys notes after by a nurse, her face lit up at the thought of not having cancer and they were the wrong persons! since then undergone chemo and another ct scan, revealling tumour same size. i too have a daughter who is 3 and its so hard to keep things normal and try and keep her semi calm when we go round, as wanting to spend as much time as possible with my mam but she is exhausted alot of the time. love to you and all of your family, this is such a horrible disease. take care xxxxx

[lynbo]

Dear Louie

I think you need to speak with your mums oncologist, and or palliative care Dr?

When my Andy was told he could have chemotherapy, they explained that, it might make him worse, as in, all the symptoms he was experiencing, could be heightened, ie, sleeping all the time, hallucinating, etc,we thought, what have we got to lose? So decided to try it, unfortunately they faffed that much Andy was too poorly to have it in the end.

What I'm saying is, maybe, your mums pain could be managed better without chemotherapy? If it's only for pain, and to slow the tumour down?

It's hard to know what to do? We will try anything to help our loved ones, and it's heartbreaking when they are wiped out, I know how you and your father must be feeling.

I'm not an expert, but maybe talking to the oncologist and expressing your feelings may give you a better picture.

I hate thinking of you crying all the time, I also know that feeling.

Sending love to you all

Lynne xxxx

[louiepc]

Update today - Mum got called back in yesterday for another blood test - the results of that is low - so she has gone into hospital today for a blood transfusion.

Other news is my Dad saw his cardiologist yesterday, and he has to have more stents put in his heart, this will be done in the next 2-3 weeks, they have given him very strong drugs for chronic angina.

I popped round this morning, just on the off chance, and when he opened the door he was as white as a sheet (my Dad is olive skinned), silly old goat refused to let me take mum to hospital even though its plain to see that he's poorly too. Grrrrrrr why is it when something bad happens, even more rubbish seems to come your way????

Thank you both Jessica and Lynn for replying, honestly most of the time I'm being very strong and not getting too upset, although for some strange reason I think this is partly due to I sort of block it out and try not to talk too much to others about it, but when all this happened this week, I can't really block it out anymore. bad week. I'm sorry to hear about your Mum, Jessica. It really is an awful disease. So difficult on everyone involved.

How are you doing Lynn, you are an incredibly brave woman, to have already lost Andy through this and then still come on this site and relive it.

Lots of love

louie x

[PCUK Nurse Jeni]

Hi Louie,

Just been reading up on your mum's case. Louie, a high temperature post chemotherapy is a very serious condition. This should have been explained to both your mum and dad when she went to have her chemo (or at pre-chemo assessment?) Basically, chemotherapy can lower the immune system and sometimes a person can pick up an infection whilst this is low. A sure sign that something is amiss is when the person gets a high temperature. Your mum should have been instructed to check her temperature if she felt unwell, and to call the chemo unit, or chemo ward, if it was high. This is very important after chemo care, and one of the most basic things to inform the person of. Do you know if your dad rang the hospital when she got the temperature? If not, then he should let them know that it happened, so your mum can be screened for infection.

Occasionally also, a person can get a flu-like reaction to the gemcitabine. This is not very common, but can happen. So, the high temperature may have been this. Whatever caused it, it needs to be reported as soon as possible to the oncology team. If your mum ever gets a temperature post chemo again, please ask your dad to ring the team straight away. They will give him instructions about what to do.

Jeni.

[louiepc]

Hi Jeni

Thank you for replying. I spoke to Mum tonight when she got home. She was given 2 pints of blood, apparently her blood count normally hovers around 10.5, but it was down to 8. She has been told that she may need another tranfusion in a few weeks, depending on her count. She mentioned to the nurses about her high temperature etc, and they have now told her that they have to be called if it goes over 38.

The thing is when she's had her chemo she literally drops off to sleep and its hard to wake her, except for toilet breaks etc, and Dad had been ready to call the hospital when her temp reached 40, but she was insisting that its side effects. Hopefully, if does happen again, then they now know what to do.

Thanks Louie.

[lynbo]

Hi Louie

Hope yr mum is feeling a little more 'with it' and that your dad is ok, all the rubbish does just seem to come at once.

Glad Jeni helped with the chemotherapy issue, so at least you know what to do.

I don't know about being brave, I've just sat and cried my eyes out, I'm going on holiday tomorrow, to Spain, with my friend - Rachael.

Were both on our own, and the only 2 in our group not to have children.

I never thought that my trip to benidorm in April 2010 would be my last with Andy?

I've never been on a girls holiday, and now I suddenly feel frightened/anxious/excited all in one?

I find this site very helpful, and if I help anyone along the way, great.

You take care

Love to all the family

Xxxx

[louiepc]

Ah Lynn, it must be so difficult, I honestly cannot comprehend what you are going through. I'm devastated at the thought of losing my mum, but if I lost my husband, Chris, I don't know what on earth I would do.

You are brave, strong and courageous, yes you are going to have plenty of times when you cry, that is natural and it is part of the healing process. I'm so pleased for you that you are going on holiday, you deserve it. I hope that you have a lovely time, you will probably have lots of tears, but Andy will be there with you, and would want you to have fun and enjoy yourself.

take care - chat when your back x

[rachelqt]

Hi Louie and All,

I have just dicovered this forum last night and for the first time this week I feel I am not alone. I feel for you, your mum, and family. I feel for everyone on this forum who is dealing with PC.

I have been in the living nightmare of PC for just 5 days. My father has been told he has a tumor on the head of his pancreas last Thursday. He is 60 and has never been ill in his life until this last 5 weeks, where he has had jundice, weight loss and tirdness. He was told it was Gallstones after an ultrasound and to come into hospital a week later to get them removed but then we were delivered the shocking news of pc cancer. He has had a CT Scan on Friday past but nobody has got back to us yet to let us know if he can have surgery.

We feel left in limbo and nobody seems to be moving quick enough. The communication in the hospital is really bad,nobody seems to know whats going on. He is going into hopital on thursday to have a stint put in to help relieve his severe jaundice. Needless to say I got on the internet and was devastated to read the statistics. I am thankful my dad does not know how to use a computer. I have never had an ache like this in my heart. My dad is so quite and unable to open up about his feelings. My mum is in bits. I can not believe how bad this cancer is. Im so sorry for going on. In a strange way it is a comfort to read and follow stories about everyones loved ones. I do hope we can all get the strengh to get through this difficult time. Rachel x

[louiepc]

Hi Rachel

I am so sorry to hear about your Dad's diagnosis. I remember how awful it was just after Mum was diagnosed, the complete shock of it and not knowing what is going to happen. It is something that I never want to experience again. Hopefully, you will see a marked improvement in your Dad after Thurs, be aware though, that the plastic stents do need replacing after about 6 months, so hopefully they will use a metal stent. I completely feel for you, the hospitals seem to go on a go-slow, it felt like pulling teeth when we were waiting for mum's diagnosis.

A few months down the line, fortunately, on a good day, things are "normal" - well our "normal" anyway. I popped in an saw Mum this morning, she had chemo yesterday, and fortunately she hasn't reacted the same as last week, but she was in bed, she looked tiny. It looked like a child's shape, seeing her so tiny and frail makes me so worried for the future, she hasn't been told a timescale - and I'm not sure if she has asked.

Mum was diagnosed with Stage 2, in the head and wrapped around the vascular vein, but also in 2 lymph nodes. She cannot have the whipple operation - because of the lymph nodes. I am just hoping and praying that the chemo will do some good and give her a bit of life.

It truly is an awful cancer, watching your loved one go through pain and waste away with not very much that can be done. Something you wouldn't wish on your worst enemy. I'm pleased you have found this site, I have found it so helpful, whether for information or just for me to rant and cry when I can't do so infront of friends.

Take care, hope to chat soon

Louie xxx

[rachelqt]

Hi Louie,

I so hope the chemo works out for your mum. How long does she have to do it? Would there be any chance she could get surgery after the chemo?

My dad took very ill last night, he was in a great deal of pain (this is the frist time he has had pain) and vomiting. He was admitted into hospital this morning and given another CT scan. Thankfully he is on good pain relief. Feel so sad for him. I managed to track down the head nurse tonight on the ward, I wanted to know why we have not had any news on how bad the cancer is from the CT scan on friday. She has reassured me that not even the consultants would have the answers to that question yet. They have to do more scans and tests. That day will not be too far off. That day I dread.

Im shattered and was glad to enjoy some time this evening with my two little girls. Feel so bad as i have not had a lot of patience for them.

Hope you had a more uplifting day xxx

[louiepc]

Hi Rachel,

Oh I am sorry your Dad has been poorly tonight, I hope the pain relief they give him manages to get him back on track.

It is so difficult for all the family, I have three children ages 7, nearly 5 and 2 1/2, my eldest knows that Nanny is not well, we have told him the basics and he is so upset about it, but he keeps things quite close to his chest, it's normally at bedtime that he gives me a big hug and cries into my shoulder, but he can't talk about it, we have given him a feeling box and he can draw pictures or write down what he's thinking/feeling and put them in the box. He got very upset at the thought of my Dad being poorly with his heart, but we have made sure that he knows once he has op he will be a lot better and be able to play with him. My younger two know that Nanny is poorly but not the full extent.

I remember snapping at the kids and my husband (still do for him), and trying not to cry in front of the children, it is so hard. I am now trying to make lots of happy memories, we were fortunate that Mum managed to come to my eldest's birthday last month and we all had such a lovely time.

Hold onto the special memories, try and make sure that you all have a good day, and you have something happy to think about, there will be times when you find that so difficult, the ache inside you just seems suffocating, and it is hard, so hard to find happy thoughts when you know the end result.

Mum's chemo is once a week for seven weeks, then one week break, then another seven weeks. That should take us to just before Christmas, she will then be rescanned, and it starts over again till about March. She cannot have an op, because it's spread to the lymph nodes, the aim of the chemo is to try and contain it and make sure that it doesn't spread any further. It is pallative, but we are now hoping that as she is stage 2, she will hopefully have a bit longer than we initially thought.

I hope your dad can have the op, and that is it hasn't spread. My thoughts and prayers are with you.

Louie xxx

[rachelqt]

Hi Louie,

That is such a lovely idea for your eldest, It is amazing how sensitive they are and also what they can pick up on. My two are 2 and 5. My 5yr old also knows that granda is unwell but its heartbreaking telling her she cant visit him in hospital, this due to the fact that they have him on a stroke ward and no children are allowed. My 2yr old is a bit miffed that her mummy is away alot other than that she seems happy!

How is your mum doing? Does she get sick much with her chemo sessions?

My dad is getting his results tomorrow from his multi-disciplinary meeting, im thinking positive in the hope for positive things to happen!! He seems to be quite well in himself, no pain from that night he took bad, they said that was caused by colic. He is still very jaundice after almost a week of trying to drain the bile out. My only concern is that he has not eaten in 2wks. He is drinking milk and plenty of fluids this last week.. So fingers crossed for some hope tomorrow.

I hope you, mum and family are keeping as well as you can

Rachel x

[louiepc]

Hi Rachel

I hope you get some positive news today. It took prob just over a week for my mum to stop being jaundiced after she had the stent put in, I suppose it just takes a bit of time to get out of the system.

Luckily mum was only sick the first time she had chemo, someone then mentioned to me that if she takes her anti-sickness the night before she has chemo is should kick in and help her, and it has. Tiredness is a major factor with mum, I spoke to her today for the first time since Mon, she just sleeps the whole time. Her manner is changing too when she's on chemo, she can get very aggressive, down and depressed. She is also hiding a lot from us and only telling us when she wants to. I don't know if these are normal side-effects, or whether its something else that is going on. Her stomach has got really big again and she needs it drained again, and she has also had a rash on her tummy (this is what she was hiding from us) the nurses told her off on Mon, and she now is seeing her oncologist doctor on Monday, will have to wait till then to see what's going on.

It is very draining, and I feel completely exhausted through all the worry of both of my parents, my dad is having his heart op tomorrow, so will be pleased when that is all done and dusted. one less things to worry about.

Take care

louie x

[rachelqt]

Hi Louie

Your poor poor mum, she really is having a hard time. Sometimes you would love to get inside their minds too see how they are feeling. My dad is so quite it pains me. If only there was a magic wand!!

My dad never got any results today, my mum and I built ourselves up for today only to be let down.. Instead they want to see us at 12pm tomorrow to discuss his Health Care (not sure what they mean by that term) The doctor could only tell me he is very unwell, which annoyed me as I felt he was picking up and someone will speak to us tomorrow. So another restless night for me again.

I suppose all you can do is be there for your mum for the good and bad days. They are truly brave for what they are going through. My dad gets very irritable for nagging him to eat, he hate when we bring him different things to try so we have backed off now. I hope they can get to the bottom of your mums rash and its nothing too serious.

Im also very sorry about your dad. I hope everything goes well for him tomorrow. I will say a prayer for him. My goodness you really do have alot on your plate at the minute. Remember to look after yourself also, I know this is easier said than done but the last thing you want is for you to run yourself down.

Take care Rachel x

[louiepc]

Hi Rachel

How did the meeting go today? I hope you got some positive news, it is such a worry for all isn't it? I would like to know what goes on Mum's head, I think it must be a mixture of stubborness and being scared and that she needs a bit of control in her life.

My Dad is now home from the hospital, it is not great news, the docs are meeting next week and he has been told, he will be lucky if he just has to have stents put in his heart, but he is highly likely to have a double heart bypass. I don't know when this is likely to be. I cannot believe both my mum and dad are seriously ill at the same time. I am now concerned how on earth we are going to juggle looking after both of them at the same time. Apparently recuperation for Dad's op could be anything up to 10 weeks.

Mum has been booked in for next Thurs to be drained again, they had been concerned that as she is having chemo, it could cause an infection, but I think they have decided that it is the better option than to wait until her chemo has a break.

I will try and get to spend some quality time with them both this weekend. I really do hope that you get some good news, try and have a nice weekend, and make lots of lovely memories with your Dad.

Take care Louie x

[rachelqt]

Hi Louie

How is your mum and dad tonight? I hope you get some type of good news to give a bit of hope!

I have had a nightmare... Went to meet the consultant yesterday and they said that Dads tumor was inoperable, like your mum it has twisted around that artery. Although the positive was that it had not spread and he was fit and well to go ahead with Chemo. He asked for some melon last night and ate it all, we were delighted!! So we went home quite positive that we were going to have dad for another while and hope that he would take well to the chemo.

6am this morning we were called for. My dad started to vomit blood and then collapsed to the floor as he tried to go to the toilet. They worked with him on the floor and managed to get him round. The doctors took us in and told us he has not much time left (days) as they thought that main artery had burst. We were floored, as i have said before he seems so healthy considering. They said there was nothing they could do now. We had an emotional day and talked with him all day. He is very alert, knows the situation he is in. He is so brave and strong. Im so proud of how he is coping. As the day went on his blood pressure had stayed good. Although he was getting some blood transfusions, not sure if this helps the blood pressure. They then said he was eligable for the camera thingy to go down and investigate the bleed. Now they say that the procedure went reasonably well, they are not sure were the bleed is coming from now.

I have had the saddest day of my life.. Mum is staying over with him, I will be standing by my phone...I hope and pray my lovely dad will get through the night, so afraid to get my hopes up!

Please say a prayer for him..Love Rachel xx

[lynbo]

Dear Rachael

I feel for you, I truly hope things take a better turn xxx

[rachelqt]

Hi Everyone

Went first thing this morning to see Dad and he had a good stable night. A doctor was around this morning and said to him, they are pleased with him and they now think the bleed could have been old blood in his stomach, but they are not sure. The bleeding seems to have stopped now. They are still giving him small amounts of blood transfusions but not as much as yesterday. They have put him on steroids also. As it is skeleton staff on at the weekend, I cant get talking to anybody who can tell me that the artery is not bleeding and my dad has not days left to live.

So afraid to get my hopes up. I never cried so bad yesterday and last night thinking my lovely dad was leaving us. I felt angery with the doctor from yesterday morning for making the situation so grim when thinking back he just presumed it was the artery, he told us to call the family and priest and nothing could be done. I feel he never gave Dad time or a chance to see how he would turn out. But you know what, life is so precious to waste my time to be angery with him! We sat around his bed saying goodbye and now today I feel that the pancreatic cancer is only minor as my Dad has hope back and we could maybe have him for longer! They were also taking about going ahead with his permanent stent next week. Why would the doctor say this if my dad had days left..I doubt someone has messed up!

What a rollercoster of emotions...Really not sure how im feeling today!

Wonder if my positive thinking is now working. Im heading back up shortly to see him, hoping he is still feeling positive too

Love to all...Rachel xx

[louiepc]

Oh Rachel, I am so sorry for you all. What an awful weekend you have had. I truly hope the doctors have got it wrong and that things get better, I will definately say a prayer for you, my heart goes out to you as what you are going through is so close to what Mum will at some point be going through.

My love and prayers are winging their way to you.

Take care.

Louie xxx

[louiepc]

Hi Racheal

How are things with your Dad? I hope he has improved and the news is not so dark for you all.

Take care,

Louie x