A forum for family, friends and carers of pancreatic cancer patients

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Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: tired

Postby Cathy » Mon Aug 05, 2013 3:17 pm

Hi Marie

Fantastic news about your Mum and what a fantastic job you have done as well!! She must be very proud of you.

A few days at home for you will do you the world of good as well. A much needed break and a bit of space.

Keep on keeping on Marie

Cathy xx

karen17
Posts: 157
Joined: Sun Dec 30, 2012 8:38 pm

Re: tired

Postby karen17 » Mon Aug 05, 2013 8:25 pm

Hi Marie,
You are doing your mum proud and I'm so pleased to hear she is feeling a little better. It's a great idea for you to go home and have some well earned rest. You need to look after yourself too.
Take care xxx

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: tired

Postby marie souter » Wed Aug 07, 2013 6:55 pm

awww man scratch the home rest mom went downhill again ... new pain, possible spreading of the cancer causing new problems .. so they've upped her patches with a view to bringing her in to do some scans etc...she doesnt really want to go in hospital, cant blame her really considering theres nothing they can do other than keep her out of pain ... bah .. so upset for her that shes gone back downhill .. here we go on that damn rollercoaster again .. thanks for the wellwishes guys xxxx am keep on keeping on :D

karen17
Posts: 157
Joined: Sun Dec 30, 2012 8:38 pm

Re: tired

Postby karen17 » Wed Aug 07, 2013 10:29 pm

Never did like rollercoasters but this ones by far the worst! Sorry 2 hear about mum Marie. Keep that chin up xx

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: tired

Postby Cathy » Thu Aug 08, 2013 11:41 am

Hi Marie,

Oh how frustrating! It might be helpful for your Mum to be checked out in hospital though? At least yuo'd know what was going on (or not).

Hope the upping of patches is doing the trick?

Cathy xx

Support Team
Site Admin
Posts: 129
Joined: Fri Sep 23, 2005 3:50 pm

Re: tired

Postby Support Team » Mon Aug 12, 2013 5:23 pm

Below is a message Marie Souter posted earlier today. Due to technical problems I have had to repost this message for her.
Anna
Support Team

by marie souter » 11 Aug 2013 11:15 am
Yeah Cathy I keep trying to get her to do it, she won't even go and have her check ups with the consultants .. I keep having to re-schedule, I can't force her I guess but she just doesn't want to know if the tumours are any bigger, she also fell twice last night...feel so much for her..tryiung to get the family to help am still getting the .. have things to do ... her son visits once every 3-4 weeks for an hr (am astounded at him as hes an icu charge nurse)and her other daughter visits less now than before diagnosis..my sis is now starting to cancel her one night a week respite for me .... her reason she only does it for me and she has things to do??? I said to her...I would think you wanted to do it to spend time with mom while you can .... my god I want to spend every spare second of the day with my precious mom while shes still here WHAT IS WRONG WITH THESE PEOPLE .. can't they understand how she must feel?

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: tired

Postby Bee » Mon Aug 12, 2013 10:53 pm

Hi, it sounds like you are having a really difficult time again, without support from the sound of things.
Wish I had some answers for you, is your local hospice providing some support at all? Try and keep your spirits up and as you say treasure your special time with your mum.
Bee xx

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: tired

Postby Cathy » Tue Aug 13, 2013 11:04 am

Hi Marie

It's difficult as ultimately it is your Mum's decision but I wonder if there was anyone who would be able to chat to her so that she is aware of the options she has - someone who she wouldn't feel might force her to do something against her will. Does she have a specialist nurse key worker who could visit, or a MacMillan nurse, or even her GP? I'm thinking someone she would trust.

As for your family, who knows.. I guess people have different ways of dealing with things and some people prefer to stick their heads in the sand pretending all is ok. You could do with the support and it is sad if it is upsetting your Mum (is it?). I suppose you have to live with their decisions at the moment but they only have themselves to blame when the time may come and they look back and realise they've missed out on all those precious moments. I don't feel qualified to give any advice not having been in your position but if I did I would say try not to get too frustrated by their behaviour - who knows.. you may even end up feeling sorry for them!

Thinking of you

Cathyxx

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: tired

Postby marie souter » Sat Aug 17, 2013 2:29 pm

HI again guys,

I did get our family doc to sit down with mom to re-iterate the importance of check-ups but she had a panic attack .. so it does seem she just wants to 'stick her head in the sand and what will be will be' ... it is so frustrating and I am being very understanding of my moms needs ... I see people on here coping with chemo and getting that extra year ... but she won'r hear of it .. heartbreaking for me as I want her here as long as possible .. but .. it is her choice .. shes never been a coper .. I was on my way to intensive care last year as an inpatient myself..my mom was there visiting and I was terrified .. mom piped up .. 'well better go gotta beat the traffic'...I could've died and mom just acted like nothing was happening sooo I was left to cope with that on my own til family turned up later (who all weren't told for hours btw)... same when my dad was dying she stopped visiting ... I don;t think I'm gonna get through to her and I don;t want to force her into anything she doesn't want to do so I guess this is it..her choice..I'll support her in any way I can until the time comes, she all the info she knows what her decision means. Family ARGH ... well Y'know what I agree with you that they are going to have their own regrets ... but right now it's moms feelings that matter more as shes feeling like they don't care ... I'm so tired of making excuses for them and promising her they do care..but am gonna keep on doing that for her .. right now as moms actually staying stable I am managing to get her out and about and have noticed her sudden gambling addiction with scratch cards lol (£100 in a week) wow ... but shes having fun and I have arranged a filled week with her for now .. hope this lasts a while and you guys are doing well as well xxxx ty for all the advice it does help

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: tired

Postby marie souter » Fri Aug 30, 2013 4:17 am

Hey guys ... still at the tired stage .. insomnias kicked in big style for me .... well moms on her 3rd chest infection in 2 mths so I'm worried she might not shake it, shes been in high spirits and we've been going out a lot..she took a bit of a backslide in health last night and I found a bedsore on her tail-end, it hasn't broken yet so I'm hoping with good care I can make sure it doesnt open .. any ideas how the cancer in her lungs would represent itself (shes had PC spread to the lungs) she has a slight cough and has a temp off n on but am worried these chest infections are to do with that? She is coughing stuff off her lungs but currently its loose so at least she's able to move it.. I feel like I'm swinging from one bit of info to the other but its just tiredness and worry I guess ... I've started smoking again and I'm so mad at myself but I am so stressed out and tired I feel like I need some outlet ... Mom was worried last night and called me into the bedroom to say her bottom was sore .. thats when I checked and found the bed sore .. but she wanted to go to the loo.. when she stood up she was so upset and just cried in my arms and said she thinks she won;t get over this latest bout of the drop in her health ... this is when I find it hard to deal with my heart breaks .... I also had a spooky happening the same evening ... I was upset and I never cry in front of mom, but I went outside for a cigarette and the tears just flowed .. and I said outloud..I don;t think my heart can take losing her ... I pulled myself together and rang my sister for some virtual hugs ... as we started talking my mobile phone rang .. I picked it up .. still ringing and went to answer it BUT no-one was ringing my phone ... yet it was ringing ... I'd like to think my dad was letting me know I could talk to him when I feel lost in grief ... or the otherside of things is that maybe he was telling me to prepare myself ... GOD ... my head feels battered ... am home one night and I fall apart ... feel like I'm just babbling sorry guys ... bad time at the mo xx fingers crossed this time next week I'll bring better news

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: tired

Postby marie souter » Mon Oct 21, 2013 4:46 pm

not been on for a while as mom took another horrible episode .. I hate this disease especially pancreatic its ruthless ... so shes been in a hospice to try and get these same old symptoms under control ... so the sickness nausea and pain all this time has been a partial obstruction caused by the stent getting all sludged up .. when shes like this her stomach actually balloons up with gas ... then she vomits horrendously with masses of air coming up with it ... horrible horrible ... then cycle starts all over again .. so theyre now giving her huge doses of buscopan and levomapromazine and something to dry up the secretions in the hopes they can free the obstruction ... been 2 weeks now and they just cant get it under control .. so shes coming home again tomorrow .. shes also riddled with secondary lung cancer (both lungs) and we been told she has weeks as opposed to months left ... I would say I had a break but mom would not stay in the hospice without me so I been there all this time but my sis gimmie a break today..what scares me now is if they can't get the pain and nausea under control now what hope do we have these last weeks .. I can;t bear that her days will be filled with throwing up and pain ... I been living with mom 7 mths now am shattered ... I been offered Marie Curie help but moms refused .. my sis has taken some time off work now my moms in her final weeks .. better late than never eh

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: tired

Postby cestrian » Mon Oct 21, 2013 8:47 pm

Dear Marie

So sorry to hear of all the additional problems your Mum is suffering from, it must be horrible for her and it is obviously very distressing for you seeing her in pain and discomfort.

As I have said elsewhere I often think, as a patient, it is more difficult for our loved ones who must often feel so helpless. I hasten to add that at present I'm doing fine with no real problems so I need little assistance from my dear wife and family.

What I'm going to say now will sound a bit harsh but you say that you were offered help from Marie Chris that your mother refused. It is you that needs the help and I think this is something you and your sister need to discuss again gently but firmly with your Mum, emphasising that the help is to give you some relief. It is so important that you look after your own health and unless your sister is really going to pull her weight then it very much sounds as if you desperately need some external help. I understand this may be easier said than done but I'm sure you and your sister will find away, maybe helped by your GP or other trusted professional.

Love and Peace

Mike

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: tired

Postby Cathy » Mon Oct 21, 2013 10:06 pm

Hi Marie,

So sorry to hear this. I am so glad to hear your sister is now taking time off work and, hopefully, will take some of the weight off your shoulders. I know from previous posts you have carried most (all) of the stress and caring responsibilities yourself. No wonder you feel exhausted.

I have to say I completely agree with what Mike has said. Completely. The help is there for you. It might help to point out (gently as Mike suggests) to your Mum that you won't be able to provide the care she wants from you without back up help. The last thing she needs (you need!) is to become ill yourself.

I am sure that Marie Curie must have someone familiar with this scenario and be happy to chat to you about what they can do to help support you.

Good luck! Keep in touch.

Cathy xx

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: tired

Postby Bee » Mon Oct 21, 2013 10:18 pm

Hi Marie,
I am not surprised as the others have said that you are exhausted. Your own health is crucial and as Cathy and Mike have said you need to get some support. It is there for a reason, please take care of yourself, you are doing am amazing job but you are only human!

Keep posting and share the load with your sister

Take care

Bee x

PCUK Nurse Jeni
Posts: 1111
Joined: Mon Jun 14, 2010 1:30 pm

Re: tired

Postby PCUK Nurse Jeni » Wed Oct 23, 2013 10:44 am

Hi All,

Marie, I am sorry to hear that your mum is so unwell at this point. Although, as you say, good that your sister has come on board with taking some of the practical side of things on - I do hope it is a good help to you, it can be very difficult to have this round the clock, so you do need help.


Although I appreciate where Mike, Cathy and Bee are coming from, unfortunately, Marie's mother is the "patient" here, and it will be to her that the option of help will be given. If, as the patient, she decides to refuse this, then this is her right. Gone are the days when you would just refer folk to x and y service - now, it has to be patient choice. And, you might be surprised to know, that many folk refuse help from Marie Curie, Macmillan, etc... As health professionals, our job is to fully explain what the benefits can be, and also, try to explore the reasons why they don't want the care, without being "pushy" - sometimes, it is something as simple as not knowing exactly what they could provide, or maybe an anxiety of having a "stranger" in their home? There are many reasons, and if we can try and put their mind at rest, then we might be able to help them make the decision by being better informed.

That said, I DO agree with you that perhaps Marie might need to have that conversation with your mum and being honest in saying that you need help, in order to help her, and to give her the best care. That you need some more expertise - maybe if you have any worries about not being able to do x or y for your mum, then you can chat through this with her honestly, and hopefully, that might bring her round to thinking of you, rather than just refusing for whatever reason she might have. Do you know why she refused, for instance?

I think that's all you can do, and if she still says no, that's unfortunate.

Hope she comes round, and that you get some expert help.

Kind regards,

Jeni, Support Team.