tired

[marie souter]

mom was diagnosed with pancreatic cancer stage 4 spread to the lungs in april of this year.. pain is localised in the upper abdomen but the last 2 weeks she has had several horrendous vomitting spells with severe nausea, she has a syringe driver which delivered cyclizine anti nausea (useless) and injections of Haliperidol (also useless) FINALLY after those two weeks the macmillan nurse came and kicked arse, now shes on a different anti nausea drug WHICH WORKS and morphine 40mg through the driver (not quite enough as she still takes oromorph and has morphine injections on top) docs think there is an inflamation somewhere and have also to injection an anti colic drug along with a steroid which has the knock on effect of increasing her appetite (yey)...has anyone else experienced these side effects as they can't give me an answer as to whats causing this, the pain seems to come after eating and drinking in waves and is accompanied by an almost deep ache in the upper abdomen area (almost period like pain)doc is arranging an ultrasound scan to try and find out what the deal is (god knows when that will happen)....as her full time 24/7 carer any advice given would be appreciated...she was supposed to start palliative chemo on wed this week but was cancelled due to deterioration in her health but shes picked up some now .. BUT .. also due to the severe sickness bouts this has totally put her off the chemo any further advice on that I can pass on would also be appreciated..Also as a care I am absolutely shattered having moved in with my mom to give her all the support she needs shes only 65 but terrified and also anxious and nervous at the best of times.. she gets up several times a night and I sleep very little (usually 2-4 hrs if I am lucky) I always manage to put a cheery smile on when dealing with her and her needs (*emotionally and physically) but I fear visitors must think I am such a miserable one as when they ask how I am I always say 'tired' not one person offers to give me a break or makes me a cup of tea .. how do I deal with this as I am there for my mom but just feel everyone sees me as general dogsbody as well .. bah I feel like I'm rambling and also feel guilty for daring to say I am tired when shes going through so much .. people told me I would have all this help? where is it?

[karen17]

Oh Marie my heart goes out to you. What a dreadful situation. You have Macmillan nurses so they should be able to give you lots of advice about what's available in your area for support. If mum has a syringe driver I guess district nurses come in daily and they are also brilliant at knowing whats around. I wonder if there are Marie Curie nurses that could support you as I believe they offer more paractical help also Home Hospice which is a service run by volunteers who could sit with mum and give you some precious time out. A lot of hospices offer day care which is something to think about or perhaps a respite stay to get the pain sorted out. Hopefully the Macmillan team have talked to you about benefits such as DLA and Carers Allowance which you should be entitled too. I know it doesnt help practically but may do financially if you are off work. Might be worth looking at carers groups in your area too.

Finally I would like to kick your visitors who don't offer you a cup of tea or offer you a quick break whilst they visit. Would like to make you a cup of tea myself and give you a hug. If they are relatives tell them how you feel.Draw up a visiting rota or something. You can't care for mum if you run yourself down.

Last of all make sure you come on here for a good rant! It really helps.

Take care Marie

Karen xx

[J_T]

Hi Marie, sorry to hear about your mum and good advice from Karen.

Obviously pain relief is first on the agenda and Macmillan should be able to help with that. Some of the people on here have found that when they or their partners start on chemotherapy the pain seems to go, so that might be something you could tell your mum if she's feeling she doesn't want to try it. Not that she should if she's really against it! I do know, from experiences with my husband, that making decisions when you are not in a good place is not ideal so my advice would be get the pain relief sorted and then make decisions regards chemotherapy.

As for your visitors! pft. I'm afraid I'd be saying 'sorry, if want a brew the kitchen's that way, I'm whacked!' make it a joke but don't make any effort to move, they'll get the message! I look after my husband full time so I know how tiring it can be.

Do keep posting.

Best wishes

Juliax

[PCUK Nurse Dianne]

Hi Marie,

I am sorry to hear your story. Certainly as the other ladies have suggested, some assistance would be great. I will email you independantly of the forum and hope that I can help you to sort out some issues.

Thank you ladies for the great suggestions for Marie, hopefully sharing with other forum family also helps.

Best wishes,

Dianne

Support Team

[Cathy]

Hi Marie

I can't add anything over and above to what Julia and Karen have advised but welcome to the forum. You will get a lot of good advice and support from here and the nurses (I see Diane has just emailed you as I draft this). You aren't alone.

I don't wish to make excuses for your guests but I imagine they are so focussed on your Mum they aren't thinking of what you are going through. I think the suggestion of pointing them in the direction of the kettle is a good one. You're caring for your Mum not for them. Also maybe letting down their car tyres (joke).

Feel free to vent on here whenever you need to

Lots of love

Cathy xx

[Bee]

Hi Marie,

Another warm welcome from me too. I can only echo all the advice you have been given, your local hospice service probably offer some support specifically for careers as it is crucial that you are looked after.

Also remember its ok to say no, to all the other people who are putting demands on you, your priority is only to your mum and you, take care and use the forum, it's fab! I feel like a new little world has been opened up.

Take care

Bee

[marie souter]

hi guys sorry for the late reply I only manage to get home one night a week to view this...I've had the district/macmillan/night nurses out for a while now so as with regards to medication everything seems more settled as moms now on 60mg morphine through a driver and nozinan for nausea which now seems to have sorted the vomitting and pain ... if I need anything with regards to support via mobility options then I have lots of help there so i receive equipment for mom as and when its required ... I did mention to mom about respite etc and she categorically doesnt want to go and I dont wanna force or guilt her into it...shes a very quiet person who would find it hard being in that type of environment .. so I guess for now am jsut gonna have to learn to cope with my one night off a week, its been particularly hard this week .. as more morphine .. more confusion .. as well as really high blood sugars ranging from 17 to HI .. most readings are in the high end on 20 .. so shes getting up n down the loo every 2 hrs to wee through the night ... but am so pleased pain and nausea is under control ... am scared to ask timescales ... but her tumor is 2.5 cms based at the head of the pancreas I am figuring just take each day as it comes, shes eating and drinking .. right now I feel like shes doimg so well and its hard to imagine life without her .. I did mention the comment of making decisions on chemo during a bad spell maybe isnt the wisest time to be making such a huge decision but she says she wont change her mind ..

[Cathy]

Hi Marie

Dont apologise as you have a load on your plate.

Great they have the nausea and pain sorted out and also great she is eating and drinking. It does souund like she is doing really well.

Even if you asked about timescales they may not be able to tell you as everyone is different. The important thing is that she is doing well now and not in pain and presumably keeping up her strength being able to eat and keep her food down. You haven't said but are they going to give her med for her blood sugar? It would be good if they could get that sorted out so she isn't up all night needing the loo.

Regarding the chemo - is it the sickness that is putting her off that as there are anti sickness pills that would be prescribed and sickness isn't a guarantee with chemo? A lot of us on here are lucky enough not to have had that as an experience. But, of course, ultimately it is her decision.

It sounds like you are doing a great job there. I wonder if there is any scope for some of these friends who visit to offer some respite for you? A few well aimed heavy hints perhaps.

Take care

xx

[marie souter]

Hi Cathy,

Yeah the blood sugar thing is a bug bear with me, I have been advising its an issue for a coupla weeks now and was told the dextramethazone she was on for inflammation caused an increase (however that was taken off 4 days ago) and I just shot down my moms just now cos my sis has rang me 4 times already on my night off lol ... did her BM's there and shes on 30 now so am furious .. she has every symptom of unmanagable blood sugars the doc currently has her on 80 mg glicazide which we doubled from 40mg but its still not helped...metformin isnt an option she was taken off that months ago .. am gonna have to stamp my feet tomorrow .. last thing she wants is to be hospitialised when its completely avoidable with the right meds ... The chemo yeah its the sickness cos she had 2 weeks of sickness just recently .. I have told her that it can be controlled etc and not everyone gets it .. I dont know what else to do .. I did bring her oncology appt forward to tomorrow but shes too confused (morphine) and doesnt want to go, I was hoping she would listen to the consultant ... just to sleep one night so I can replensih and recharge my batteries .. fingers crossed for tonight (if my sis lets me lol)

[J_T]

Marie, have you no-one who can at least come and stay with you and do the night shift for one night so you can get some sleep? Its not like you can catch up during the day!

I wouldn't think about chemotherapy until you have your mother stablised and more relaxed and with it. As you say, its ultimately her choice but she needs to be in the right frame of mind and aware of the facts before making a decision.

I can't offer anything on the sugars as I have no experience but understand how frustrating this must be for you!

I do hope you can get some respite.

Best wishes

Julia x

[marie souter]

aww ty am jsut venting mostly get it out my system

My sis does one night a week for me, only thing is more often than not she cant cope and i end up going down anyway..but at least she trys wish me luck tonight tho x

[J_T]

Good luck! x

[Bee]

Hi, it sounds like you are doing an amazing job, and that you need to stamp your feet about the blood sugars.

But it also sounds like everything is falling to you, as before you need to try and get some support for you. Is a rota a possibility, friends who could simply sit with your mum and give you a small break?? Or ask again about the hospice/ Macmillan team are there carers who can help at night and allow you to get some sleep??

You must be so worried and exhausted.

Here's hoping you get some rest tonight

Bee x

[marie souter]

Updating this cos its been a while, Moms doing very well after much to-ing and fro-ing we found that she couldn't handle more than 40mls of morphine without the build up in her kidneys causing huge problems...sleeping all the time, severe confusion, morphine spasms where she can't even hold a cup, can't feed herself, couldn't hold her leg weight or sit up on her own, incontinence..Oxycodone didnt agree with her...then comes Fentanyl patches .. much much kinder to the kidneys and 'VOILA' new mom ... she's doing great..shes constantly on Levomapromazine now to control her sickness which comes regularly and seems to be alongside a back up in her bowels for some reason...Creon seemed to be the issue on this one btw and we reduced the amount, as the doc gave her 40,000 when she was only having todler size portions...now on 10,000 and what a difference to her sickess...from being bed-bound .. she is now getting herself out and about and actually living, she feels so much better and we are totally taking full advantage of this period. I am actually getting some decent sleep and she is so well I am even thinking of going home a few nights this week to give her some independence back ... which I think is super important for her to not feel like an invalid all the time for her own sanity. I know i still got an awful time on this rollercoaster but while things are good I am making sure I am getting as much rest as my mom to make sure I am as strong as needs be to help her through the tough fight she still has ahead of her .. she has a chest infection atm (her second this month) I am worried as I know how this could go but she seems to be responding well to the antibiotics again so .. yep happy the way things are going... bTW big shout out the Out of Hours Team, the District Nurses and the Macmillan nurses they all kick arse and have truly restored my faith in the NHS ... I would recommend them to anyone..

[marie souter]

also meant to say, I never got any help from family..I asked for it and was told..I have a family...I work...I have things to do....totally mind boggling stuff really...as I do have a family and I have 1001 things to do considering I have rarely been home since easter sunday lol...and whoever doesnt think that looking after someone who is terminally ill isn't work??? needs a taste of reality..but anyway as posted above things are more on an even keel atm so my need for rest and sleep is much less and am able to focus on my lovely mom and having some great unforgettable times and making some much needed special days special memories .. recouping my strength for the next bout which will inevitably come but I'm ready for it xx

[Cathy]

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]

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]

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

[karen17]

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

[Cathy]

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]

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]

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]

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]

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]

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