My mum's story so far....

[ali40]

Hi to everyone, so glad to have found this site, had not really heard of PC or known anyone with it so feel like we've been thrown in the deep end and it's nice to get both sides of what can happen, to be prepared.

Mum's story started in Aug 2011 after several visits to gp for constipation,heartburn and pain in her right side she was given an ultra sound scan, gall stones diagonesed and 3 weeks later her gall bladder was removed by keyhole surgery (now wondering if they had opened her up would they have seen tumor?).

Op went well she didn't feel much better and when she went for her 6 week post op check she was starting to get jaundice, scanned imediatly and a roaming stone was seen, ERCP following week couln't find a stone but a temporary stent was fitted as mum was quite yellow by now and feeling quite ill, weight falling off her as she was struggling to eat.

I think she started to suspect all was not well, but luckily in one way has no internet to google and scare herself.

We were now in November and a couple more ERCP's were done one with ultra sound and a biopsy was taken.

December 2011 - CT scan was done and late December we saw a doctor who told mom biopsy was fine and she'll still be here for next new year, but were sending biopsy for second opinion no mention of CT results.

Jan 2012- stent replaced with a metal one and following the procedure once home mum vomitted with blood was advised to go to A&E I took her where she had lots of tests and was admitted, next day she was told by a random doctor she hadn't seen before she had a mass on her pancreas and he couldn't believe she hadn't been told! She was on her own and that was all he said, next day different doctor mentioned it was in-operable again when she was on her own. Not pleased at all how this was done. Managed to speak to mum's doctor at visiting time the next day and this was the first time cancer was mentioned and he thought we had been told, he was her doctor don't know who else was supposed to have told us.

Feb 2012 - another ERCP taking it up to 6 at a specialist hospital for another biopsy. 14th February definite diagnosis in the head of mum's pancreas can't be operated on and we were given an appointment for 22nd Feb with oncologist.

Oncologist realy lovely doctor very informative didn't need to ask many questions as she was so thorough. When we asked as mum was very anti chemo she said withoutt chemo mum would have 6months, with if it works 12-18 months both are quite scary. luckily mum has agreed to chemo and starts tomorrow.

At the moment she seems really positive and i'm a bit scared if the chemo makes her feel worse she'll lose hope and i'm thinking keeping a positive attitude helps a lot. She has no energy to go out only places she has been in last few months are doctors and hospital appointments, best thing the oncologist did was give her a week of sleeping tablets she's only taken a few but they have made such a massive difference as she hasn't slept properly for months.

Anything in particular I should be aware of or look out for after chemo? I'm sure we wil be given lots of information tomorrow but don't know what questions to ask. She has to have it once a week for 6 weeks then a scan.

Best wishes to eveyone out there dealing with this awful disease.

Alison.

[louiepc]

Hi Alison

I am sorry to hear about your Mum.

Your story is so similar to my Mum's.

My mum sadly passed in December, but she had chemo in September, and the thing I would definately mention, which wasn't mentioned to either my mum or dad, is watch out for the temperature. Mum became very ill, very rapidly, with a high temperature, she put it down to chemo, but it was in fact an infection, and very serious. After this episode we made sure that mum's temp was taken a few times a day, just to make sure and keep an eye on it. She also was extremely tired, it would not be strange if she slept 36-48 hrs after chemo. Her mood also changed, she was usually such a placid, mild mannered person, but she got very snappy and irritable.

Unfortunately my story is not a nice one, I have written quite a lot during the time of Mum's illness, but the November/December stories are not very nice, just a warning, everyone is different with their pc, there are some wonderful stories on here, where there is hope.

Positive thinking is the best way to go. Mum was very strong and determined up to the very end.

Good luck tomorrow with the chemo, I hope your mum, copes well with it. Is it Gemcetabine?

Keep in touch, you will get lots of good advice on here, I have made lots of friends on here, of people who know exactly what you are going through.

louie xxx

[rachelqt]

Hi Alison,

Welcome to the forum although it is unfortate the circumstances its under. Sorry to read about your mum. Its has to be the worst feeling in the world when just diagnosed with PC and then when you start researching the internet it just feels like the bottom has falling out of your world.

Very fustrating also for you to get your disgnose, some people on here also have been through the mill. PC is one of those cancers that needs more awareness!

My dads story has been quite positive since he started his chemo. He was a fit and healthy 60 year old although liked his food too much! He went really down hill from janduice and spent 6/7 weeks in hospital. He was diagnosed in september 2011 He was very weak at home, and we thought he would not be fit for chemo. Thankfully he was told he was strong enough for it. He has had little side effects thankfully, his appetite came back and he managed to put back on 1 and half stone after loosing 3 stone. He has good day where he has energy but also some days where he just lies up on the sofa all day. HE is waiting for a scan after 4 months of chemo and where hoping his tumor has stayed the same or shrunk! His tumor marker have come well down since he started the chemo so were staying positive.

As Louie says looking out for a temperature/shivers is important. Dad is now in hospital on an antibotic as he has picked up a few virus but he seems to be on the mend and should be home soon.

Everybody is indivdual to this cancer and treatment. Im sure you are all very nervous about starting the chemo but stay positive! Some great people on here to give you support all the way.

Wishing your mum all the very best with her treatment.

Takecare...Rachel xx

[DRAD3]

Hi Alison

So sorry to hear about your Mum. My husband's road to diagnosis was very similiar to yours - blocked bile duct lead to accelerated jaundice, stent fitted and tumour at head of pancreas found, inoperable. Gary was given 6 months without treatment and up to 2 years with. I wanted to give you some hope - diagnosed in January 2011 and he is still fighting over a year on! He is in hospital as I write this as he had a temperature during the night. This has happened before, and is one of those scary things you learn to deal with, but the safeguard procedures for cancer patients are second to none and my husband gets told to go to the hospital straight away where they take immediate action (in this case, intraveneous antibiotics). He is fine this morning. I know this time last year, I didn't think he would make his birthday in May, but he did and then we got to go away on holiday in the Summer and then he made Christmas, incredible milestones. An achievement that is down to his absolute determination to be around for as long as possible for me and our young daughter. He is only 46 and he is just not accepting it is his time to die. Going for treatment has by no means been easy. He had very little side effects with his first treatment (SCALOP chemo/radiotherapy) and he had a mixed response at the end of that (tumour in the pancreas unchanged, but lesions found in the liver). His second treatment was a combination of 3 chemos, very aggressive and he did not tolerate this well so it was stopped. The disease has progressed but his determination to keep fighting persuaded his consultant to try another combination of chemos. He is now on Gemcitabine and Cisplatin - not a walk in the park but OK so far. The main thing is monitoring temperature and acting quick if it hits 38. You will get contact numbers and what to do, though, so don't worry. The main problem on a day to day basis throughout the time has been extreme fatigue and flu like symptoms. He still manages to maintain some sort of normality (a different one to before though - he had to give up work, for example) but he keeps busy, keeps up with friends, goes out most days. I took a lot of time off work last year, thinking he had no time left, but am now back at work. My daughter goes to school every day and we carry on as best we can with our normal routine - I now absolutely refuse to stop and wait for the inevitable. That means stopping living - that means the disease is winning. We spend lots of time together as family - quality time. Everyone is different - it can be so confusing, reading the many different stories on the forum. I have had times when I can't read them because it doesn't help me stay focussed and positive and I really do think that is SO important. Emailing Jeni and PCUK has been an absolute saving grace - she is wonderful, so helpful, if you have any questions, don't hesitate to ask her, she replies so quickly. You will need your strength, Alison, but you will find you didn't know you had so much. Stay positive (you will have moments of utter despair and wanting to give up, but give in to those moments because they WILL pass). I hope your Mum responds well to the treatment and that you have lots of time to enjoy together.

With love

Deb

[PCUK Nurse Jeni]

Hi Alison,

Welcome to the forum, and sorry to hear your mum's story so far, and the other complications which led to her diagnosis.

Good news that she can start chemo. Just wanted to pick up on one of the comments on the above posts about temperature after chemotherapy. Having worked for several years in a chemotherapy unit, and being responsible for setting up and running the pre-assessment clinic, I can assure you that temperature is very high on the agenda's of chemo units throughout the country. I am very shocked that no-one mentioned it to Louie's mother or father. This is the one piece of information which is crucial. In fact, when you are given the written information about the chemo (which everyone has to be given), then it is also clearly outlined there. There are still chemo units which provide free thermometers for the patients who are undergoing chemo, so they can check their temperature.

Chemotherapy itself does not CAUSE a temperature, but it can lower the body's ability to fight infection. If the person picks up an infection when on chemo, then the body will develop a fever to alert you that something is going on. It needs urgent attention, because the body would be unable to fight the infection without help from antibiotics. Not everyone will get an infection - some people will complete their whole course of chemotherapy with few side effects, which are manageable. It is important to have a balanced view of the treatment - it will cause tiredness, possibly some nausea, and it may cause the blood count to be lowered. These are all side effects which can be addressed. The urgent thing is the temperature.

Please contact the support line if you have any other queries.

Kr,

Jeni.

[laura]

hi alison, welcome to your "new friends", sorry to hear about your mum, my husband chemo regime was GEMCAP a two part treatment, infusion weekly for three weeks then week off together with daily tablets for the same time, then 1 week off, bri had this for 19 months!.

has a scan every 12 weeks, first 2 scans showed some shrinkage, subsequent ones were stable, this is where we are currently, having had 3 months no chemo, a scan, showing stable, starting another 3 months without treatment. he underwent an operation to do a whipple procedure, but unable to remove tumour as wrapped round a vein, [still is] so sewn up and chemo started, happily he has far exceded what any one expected him to, hes always had a P>M>A. and am sure its helped, just wanted you to hear about a different side of a story, but of course everyone is SOOO differant, regretfully no guarantees with this one.

all the best to you all

laura x

[ali40]

Hi

Thank you all so much for taking the time to reply, it means a lot to hear from people who are in the same position.

Everything crossed that all goes well tomorrow don't think I will sleep much tonight, mum is taking a sleeping tablet so she gets some rest.

It's so nice to know there's somewhere to ask questions and write where people understand and no brave face is needed.

Thanks once again and very best wishes to you all.

Alison.x

[ali40]

Hi,

Had a really crap day today, one of mum's legs has swollen up over the weekend, she has previously had both knees replaced and has been fine since.

She started chemo on Thursday and had a niggly pain in her knee on Friday it got worse over the weekend, its very swollen and painful now. She rang the oncology ward this morning and they said to come straight in.

It has taken 8 hours to find out she has a blood clot in her leg, doctor said it was a coincidence that she started chemo on Thursday, she didn't take her pain killers as we thought she would be in and out.

We got there at 11.30am saw doctor on oncology ward at about 12.30 lots more waiting around for blood tests etc. Given antibiotics for sore throat she hadn't complained of and booked in for a scan at 4.30. Not allowed to leave hospital in between. Scan was done showing a small clot back to dvt place no medics left so taken to emergency assessment unit took 2 hours to get heparin injection after, being assured it would be really fast.

She was without any pain relief for 7 hours and only got it when I asked several times. We have learnt our lesson she will carry some with her in future.

Also they refuse to give her sleeping tablets, she was given 7 at her 1st appointment with oncologist. She doesn't take them every night, but without them she hadn't slept for months, just every other 3rd or 4th night she needs some sleep.

Has anyone else had trouble getting sleeping tablets?

Hoping things pick up from here. Know so many of you are going through much more , but feel like this is just the beginning and its hard to be positive.

Best wishes

Alison

[PCUK Nurse Jeni]

Hi Ali,

There should not be an issue in getting sleeping tablets - it is something asked for a lot in pancreatic cancer, as folk seldom have a good nights sleep.

The oncologist should be able to prescribe some non-habit forming sleeping tablets. These are usually used to establish a routine, so therefore, there would be a definite end to the script ie: 2 weeks worth. Most sleeplessness is due to the pattern being disturbed, and the purpose of sleeping tablets is to re-establish this pattern, allowing the person to get back into a natural sleep/waking routine. They should not be a long term solution, however, but there are occasions where exceptions need to be made, and they need to be given for longer.

I would approach the oncologist the next time you are in the hospital, and ask for some more.

Regarding your experience with the diagnosis and treatment of the dvt, then this is not an uncommon occurrence. Things take a lot longer to organise and implement than one would imagine. Sometimes, a person would need to return on a different day to have the scan, as they are not always available on the same day. Usually in this case, the injections are started without "proof" there is a clot as a precaution. The reason she would not have been allowed to leave hospital is that the scan was booked, and if she had any further "problems" in this time, she would be in the best place. Blood clots can travel, so it is the correct and responsible thing to keep the person in the hospital until the scan has been performed, to make sure there are no complications in that time. The delays can vary from getting a doctor to prescribe the injection, to getting it dispensed at pharmacy. Again, not saying it is the best service, but adding up all the delays, this is what happens.

It is not good that she was not given pain relief - did you ask at oncology about this, as this would be the most appropriate place for this to have been given. If this was asked for at ESS, they may not have been equipped for this kind of request, and again the red tape of getting doctors etc... to sort it was probably what held it up. It is a sad fact that most health staff are overstretched, so sometimes, if there is only one doctor on call, and he is dealing with an emergency, the person who requires pain relief would have to wait for the medication to be prescribed before it is given. As nurses, we are not allowed to give pain relief of that nature without a script.

I am not trying to excuse what happened, but hopefully outlining some of the hitches which you come across when visiting a hospital environment. It is difficult when you are accompanying someone close to you, when all you want is the best for them.

I hope this helps somewhat?

KR,

Jeni.

[ali40]

Hi

Not looking forward to today, it is my mums birthday and it will be her last one she will be 66, I have been holding up quite well but today i'm struggling.

The last 3months have been ok she has been as well as can be expected her pain has been managed and hardly any hospital visits.

In the last 3 weeks she has realy gone down hill, fluid started to build up in her stomach area she looked about 8 months pregnant, I took her to hospital and we were there about 6 hours and they drained 3.5 litres of fluid off, the fluid started to build up again and I have to take her back again tomorrow her GP says maybe they will fit a permanent drain? Has anyone got experience of this?

She is struggling to eat as the pressure is so great again now and it is also heavy. she has got so thin lately.

My mom lives alone in a an upstairs flat they are fitting an outside key box today so she doesn't have to open the door to people anymore as she is struggling to get back up the stairs, she has also asked the district nurses to come in from Thursday to help her get washed this is a big sign to me of how unwell she is now. I have offered to do it but she doesn't want me to she did it for her mum and said she doesn't want to be a nuisance.

My kids are 15 and 13 they know she has cancer but have no idea how ill she is my son has written get well soon in her card which is heartbreaking i'm dreading her opening it. My daughter is a complete worrier and has been doing exams so can't tell her as she will go to pieces.

I also have a brother who is about 10 years younger he has an almost 2 year old and a baby on the way and neither he or his partner can cope with whats going on mum helped out with their childcare before she got ill and the little one loves her nanny to bits she really brightens mums days up unfortunately she doesn't see enough of her.

On a positive note I am amazed at old friends and family who have been visiting mum since she was diagnosed I don't think she would have been well for so long without these people they have kept her going.

Mum has started to talk about her funeral and wishes now, hard as it is i'm glad, as its better to know so I don't do the wrong thing.

My sister lives in Portugal and we are having the dilema of when she should come back as she lives alone and can't be away from her job for too long. I spoke to her last night and was completely honest as last time she was back mum wasn't too bad. think she was shocked.

I've got some bad days ahead, thinking of everyone who is in a similar position and wish I had time to get on and post more. My thoughts are also with all the people who have lost their friends and family.

Alison.

[laura]

oh alison, so sorry to read your post, what can i say! just try and get thru the day, could you take the granddaughter with you? children always detract from whats around and guess mum will enjoy the cuddles, spect you could do with a hug, am sending you a virtual one <<<<<<< hug >>>>>>>>,

am glad mum will accept some help, have you a macmillan nurse, [ oe similar ] they can help and arrange so much for her and you, well in my experience thats what i found.

do hope YOU can get some support, sending love and strength to you all

laura xx

[louiepc]

Dear Alison

It is so hard isn't it? Seeing the change in mum and not really being able to do much to help.

My mum had a permanent drain fitted. Hooray we thought at the time. Sadly, for mum, not the case. We were told that a trained nurse would come to her house and drain her periodically as and when she needed it. Great! What we soon discovered, that there was only one nurse who was actually trained in this procedure in the whole of our area. A number of nurses were due to be trained up, but "not yet". The nurse tried to drain mum at home and couldn't get a great deal out. this went on for a week or so. Very little coming out, but mum's tummy being huge. She then had to go to a specialist hospital, very traumatic and discovered that her drain had in fact blocked. They took the drain out and decided replacing it would not be a good option.

In theory this procedure would help not only the patients but also the doctors, with regards hospital beds, the amount of time draining takes and of course the trauma to the patient of being drained each time instead of a permanent line being placed. Unfortunately, in our area, I cannot talk for other areas, very few are trained, in fact one nurse to drain, and one doctor to fit. Utter madness! Yet another hurdle that seems to be shoved in the way of making PC patients lives easier.

It's good that your mum is getting help in, it's good that she's recognised that she needs it. It is so hard on all the family, especially when they are living far away. The only advice I can give is, be there for your mum as much as you can, chat and make memories and remember the good times. Do not regret anything, what goes unsaid doesn't matter, your mum loves you and knows you love her.

I remember people telling me to tell my mum all the stuff I needed to. I would go into a panic, and then calmly realise, mum knew everything about me, good bad absolutely everything. I did what I could for mum and have no regrets. Six months now since my beautiful mum has gone, and she's started visiting me in dreams, which is so special. I feel her presence around me and I feel safe.

Take care hunny, I wrote an awful lot in the run up to mum going, your mum sounds very similar. Some of it is not nice reading, but if you want a foresight of what may happen, it's there.

lots of love

louie xxx

[DRAD3]

Hi Alison

So sorry to hear that things have deteriorated for your mum. Things change so quickly don't they? No matter how prepared you think you are, it still kinds of sneaks up on you. Everyone is different and my husband's passing was nothing like I was expecting (I was terrified but he passed peacefully with no pain). My husband did not get any fluid build up until the very end so did not need any drain procedure (the hospice at home nurse said she didn't think he had very long left and thought it was kinder to leave well alone rather than put him through the upheaval and trauma of a hospital visit - it was the right decision). I do hope that you have access to macmillan or similar nurse at this stage. If not, start chasing this. They are absolutely wonderful in ensuring that patients are pain free and comfortable. They can also put you in contact with services that can help around the home etc. This sort of support can leave you free to give your mum emotional support and lots of love. Sending you love and strength. Take care of yourself too.

Deb

x

Deb

x

[ali40]

Hi

Thanks for taking the time to reply. Louiepc I have read about the permanent drain so feel more realistic about that now thanks.

Here is the latest saga don't know why life is so hard. We arrived at the hospital for mum's appointment at 10.30am on Wednesday it wasa real struggle to get mum there as she is so much weaker now. We saw a doctor in clinic at about 11.15 - he did not even know why we were there!!!! Mum had seen the GP the Friday before with the fluid build up and obviously it had got lots worse since then.

Clinic doctor had to go and see triage doctors to see when they could do an emergency drain, he came back and said they would do it while we were there but we would have to wait. Two hours after arriving and only due to the receptionist(who is worth her wait in gold goes way above and beyond) mum was put onto a bed so she was more comfortable. They put the drain in 4 hours after we got there and drained out 4.5 litres this had built back up in just under 2 weeks. We were there 7 hours in total unacceptable for someone as ill as mum. I was completely shocked at the nursing staff who wouldn't help the triage doctors, mums drain bag almost burst and they were reluctant to do her obs so we could leave so the doctor had to do them herself and didn't even know how to turn the machine on, but between us we managed.

I feel we are being pushed from pillar to post Gp thinks Macmillan should be doing things, Macmillan said GP and hospital if draining is needed so I still didn't know who is my first port of call.

The palliative care nurses have started to come in to get mum up and wash her they are lovely.

On Thursday we called out GP as mum seemed a great deal weaker I stayed with her over night and she said she would get on to the Macmillan team and we would look at mum going in to the hospice.

Macmillan nurse came to see us yesterday afternoon(Friday) unfortunately there were no beds at the hospice and a waiting list this was not something we had considered. Mum doesn't want to be a burden and long term I don't think i'd be able to manage but short term I would. She offered mum a bed in the local nursing home where she said there is a section of palliative care beds.

So this is where we are at, I hate it and don't want her to be there. We left her while I popped home for a shower and when we got back she said "I didn't think it would be like this " I don't think she had seen anyone whilst we were away. It was better when she was at home.

We went to put her on the comode no bucket in took 10 minutes to get the bucket. She had had no pain relief since co-codamol at 12.30pm and Oramorph at 3.45pm, we buzzed for the nurse it took 30 mins for them to give her the Oramorph. It's probably not their fault they probably don't have many staff on at night, but that doesn't help mum.

The only good thing about her being there is she has a special air mattress, they said they would change her position every 2 hours but there had been no sign of that.

I went to pieces after leaving her there and i'm dreading going back I feel so out of control and just want to take her home. I don't want her to die there.

My sister is back from Portugal and has really been thrown in to the deep end.

Wish things could be easier, think mum thought she was making it easier for us by not wanting to be at home at the end, but now for me it is so much worse.

Don't get time or to pc enough to post any more and I am thinking of all of you whatever stage of the journey you are at and thank you again to the people who post on this forum it is a big help to read your stories and know you are not alone.

Alison.x

[louiepc]

Hi Alison

Oh god this is taking me back to last year.

Firstly, with regards the draining. You need to get a point of contact at the hospital. Draining your mum is down to the hospital. Your mum's consultant is the person to speak to, ring his/her secretary and "demand" in a nice way, that what is happening is not good enough. Your mum should be admitted to CDU, which is basically you bypass A&E and the triage system. Your mum should be able to have hospital ambulance, have a bed ready and waiting for her and hopefully be discharged the same day. I do know the frustration of the "red-tape", it is so annoying. Unfortunately, it seems with most hospitals, if you don't ask, ask, ask. you will not get. You are speaking for your Mum as she can't anymore, so you demand that she is seen, get appointments, either weekly or fortnightly set up for your mum to be drained. This can be done, as I did this for my mum.

Sadly, it was explained to me, that the bigger the tumour is, the more fluid build up that happens, and the faster it happens. There will come a point, when you will have to say enough is enough, as it is so traumatic. My mum had an appointment 2 weeks before she went, and my Dad was very keen on her going, but between our GP and the hospital team and myself, we pursuaded him, that it wouldn't be in Mum's best interests, we were so frightened that she would die in hospital, she stayed at home.

Your MacMillan team, are they linked to your hospital? If they are, go and see them, chat to the doctor in charge, explain the situation of what is happening. We didn't have MacMillan, we had Eleanor Lions, but I think they are pretty much the same. My Mum stayed at home, we had all the equipment delivered to the house, bed, commode, wheelchair, bath seat, bed rest etc etc. Sadly, like I said earlier, if you don't ask, you probably wont get.

Painrelief - no one should have to go without painrelief, this was one of my bugbears, when mum was in hospital, similar happened. Made me so mad!

As for being at home or in a nursing home. Obviously you have to do what is best for everyone. I wont lie to you, it is extremely hard, emotionally and physically looking after someone who is terminally ill. The weaker they get, the harder it is to move, and like you know, they have to be moved else they get bedsores. If you feel that between you and your sister that you can look after mum at home, and you want to. Then go with it. The Macmillan team should have set up care coming in, I think you mentioned that, this can be up to 4 times a day. This is a huge help. You can get night care too. You will also be given a point of contact if an emergency arises in the night, and sadly nearer the end, you will probably get someone being there during the night for you.

My thoughts are with you and your family, I know all too well what you are going through, and it leaves me with a heavy heart. Lots of love, be strong, you are the voice, demand in a nice way and get what you need for mum.

louie xxxx

[ali]

Hi Alison

Try and get your mum home as soon as you can

I am sure you will all be glad you did

AND as Louie said she deserves the best care and attention at this time

A home care package should be in place and can be arranged quickly---be firm!

You all have enough emotions to deal with now ,so you don't want feelings of not having done the right thing--I mean afterwards

So sorry for your family as all this lack of communication from hospital etc. is the last thing you all need

BUT it seems to happen time and time again and makes me want to scream and shout

take care

Helen. Xx

[ali40]

Thank you both so much for your replies, glad to say mom is now home I broke down at the nursing home today it was awful and we got her home ourselves it was such a relief. The district nurse is coming in tomorrow we will try and manage at home until a hospice bed comes along if we have that much time.

Thanks again short post as on my phone.

Alison. X

[DRAD3]

My thoughts are with you Alison. I was where you are now at the beginning of April. I am so glad I was able to care for my husband at home. It is the hardest thing I have ever done but worth every moment and gives me great comfort now he is gone. I hope you get all the support you need. Sending your mum, you and your family love and strength. Deb

x

[ali]

thinking of you Alison and wondering how things are going at home

Take care

Xx

[ali40]

Hi all

Thanks for your replies, we managed really well with mum at home in fact we had some lovely times together me and my brother and sister reminising about old times, it was a really special time and we all felt the same. It has been quite a lot of years since we have all been together in the same room getting on, think that has been massive releif for mum. My brother has really surprised me and said himself that he has really grown up in the last week. She has had such a lot of visitors, but its so hard to turn people away at this time.

My sister took the decision to go back to Portugal on Tuesday I don't know if that was the right decision and I did point out that we may not be able to get her back in time at the end.

A hospice bed became available on Wednesday so she is there now, it is the most wonderful place next best thing to home the staff, the atmosphere, everything. She is very happy to be there and although I would have tried to manage at home I can see it is for the best.

She seems to have a good day then a bad day, yesterday she looked a bit better and was brighter but today she doesn't look so well. She stays in bed all the time and has done for the last week, she looks very thin and is continually tired. She has slept for 2 of the 3 hours I have sat with her today. I'm popping back later with one of her friends.

I was expecting the pain to be really bad by this stage but it isn't, i'm glad but very surprised.

Thinking of you all

Alison.

[Ella50]

Hi Alison,

Glad your mam is happy at the hospice, I know my mam was too, a real home from home.. She seemed to feel safer there as they are much better equiped to look after her.. loved the little happy hour lol and she had a lovely view looking out over the garden, even celebrated in a re-newal of vows with the lady in the next bed- aww

They will be able to control her pain well, and also offer any support to the family..

It still hasnt hit me that Ive just lost her..

Just so so fast..

My mam was in hospital 5 days and then had her last 5 days at the hospice..

Take care

Ella xx

[laura]

hello alison, sorry to hear of your mums deterioration, but great, isnt it, that shes where she is, she will recieve the best of care, and am sure you will get support too, at least it leaves you free to just "be" with mum without all the caring being on your shoulders,

nice that the family are pulling together.

thinking of you, wishing you strength.

love laura xx

[ali40]

Hi all,

My mom passed away on Monday morning I was with her holding her hand and I hope she knew that. I will be eternally grateful that she was in a hospice I can't express how good they were to my mum and to all our family and friends they are angels on earth.

This cancer is such an evil disease and it happens so quickly, would urge peple to talk and get everything in place as soon as they know even if they think there is plenty of time.

My mum was so brave and enabled us to cope with everything, she never cried or complained, I was there at the end and she looked so awful, have to make the decision to se her in the chapel of rest. I think I want to go she wanted to wear a red dress and I am sending a new cardigan I bought her for her birthday. It is our first funeral and feel lost.

My thoughts are with anyone in a similar situation or anywhere along this path.

Alison.xx

[louiepc]

Alison

My heartfelt condolences goes out to you and your family.

I am so very sorry that your Mum has passed. She would have known that you were there, she is so absolutely proud of you for all that you have done for her.

It is very difficult arranging a funeral, did you talk it over with your mum beforehand? I managed to sit and chat to my mum, so had a rough idea of what she would like. Luckily my Mum's local church had an excellent website which took me step by step through the different parts of the service. I found it like arranging my wedding, but not happy. Although in saying that, the service was beautiful, and everyone said afterwards it was clear how loved she was.

Feel free to email me if you ever want to chat, I'm 6 1/2 months ahead of you, but, know how you feel and what you are going through.

Take care of yourself. Lots of love.

louie xxxx

[DRAD3]

So very sorry to hear about your Mum, Alison. I know it is little comfort, but know that we are thinking of you at this difficult time.

I was also unsure about visiting Gary at the chapel of rest but, like you, wanted to check that he was looking OK and wearing the clothes he had wanted to wear. He did look OK and I was glad I went because it also confirmed what I already felt - that he was no longer with his body. I did not feel his presence there but as soon as I got home, I felt him there and continue to do so. It is, of course, a very personal choice that is yours alone. Just go with your heart with all the decisions now to come - take your time - don't feel pressure to do things that you are unhappy with and most of all take care of yourself.

Sending you and your family lots of love.

Deb

x