Mum - Just Diagnosed

Hi Ruth,

I think Didge's advice is spot on.

In terms of the holidays, I would advise cancel nothing. We had 2 holidays abroad booked before Jonathan was diagnosed and we did both of them.

Thinking of you.

Cathy xxxx

Hello all - just wanted to update those of you who have been kind enough to give advice, with the surrent situation.

Spoke to Mum last week and she said she had recently seen the oncologist again and he has told her there is nothing more he can do for her. basically he wants her to increase the liquid morphine but she is adamant for the moent, she would rather live with the pain than me 'doped up' as she calls it. She hasn't seen the palliative care nurses for nearly 3 weeks!

She is also suffering from an extremely swollen & distended belly. Coupled with the fact that that she has lost so much weight and has nothing to fit her, she is very depressed. She admitted they had to call the doctor out last week, to examine her stomach, but he could shed no light on what might me causing it & has referred her for an ultrasound - although how long she will have to wait for the appointment, is anyone's guess.

Mum is still struggling to eat and has good days & bad days. She gets frustrated that she has little energy and often has to go back to bed. It's difficult to know what to say or do especially as she won't talk much about how she feels.

Ruth

Hi Ruth

Why hasn't she seen the palliative care nurse? It's up to your Mum of course about the level of pain killers she wants to take but she could slowly increase her uptake of morphine to a level where it is helping her and doesnt make her feel doped up. Certainly our expeerince of morphne was that it didn't do that. Could you ring to get a nurse to visit who perhaps could have a gentle word with her about the benefits of reducing her pain and how that would improve perhaps her feeling of wellbeing and possibly heer appetite.

It sounds like your Mum possibly has ascities (fluid on her tummy) which is caused by the cancer. I'm surprised the GP didn't suggest that. An ultrashound will detect this so worth chasing up. The fluid can be drined if it is causing problems.

Best of luck

Cathy xxx

Hello again. Mum had her ultrasound at 7:30pm on July 14th. Diagnosis was confirmed as fluid on the stomach but because her appointment was so late she had to wait for the results to be sent to the GP and then went in for the procedure to drain the fluid on Wed 22nd. They took 3 litres! Unfortunately mum's stomach didn't go as flat as she would have liked even after the draining.They have said that this will build up again and the procedure will have to be repeated. It's a very exhausting process to go through especially as it's a 40 mile round trip to get to & from the hospital.

Another problem for her to cope with, is that she is suffering from a build up of bile which has caused her to become extremely jaundiced. She says even her scalp is yellow and not just pale. Her whole body is very yellow and she now doesn't want to go out and be seen in that state, as she calls it. The hospital says that she could have a stent to help the jaundice but she's refused saying she just doesn't want to be 'pulled about' any more.

The hospital were very supportive in as much as they have given her a contact number which she or my stepfather can call 24/7 if they are worried about anything.

We will be going up to see her in 3 weeks time, and I've suggested that my husband take my stepfather out for a pub lunch whilst I stay with mum; as he has no respite from caring for her.

As for the palliative care nurses - they have been to see mum a few times but don't seem to be able to offer and constructive suggestions re pain, other than increase the morphine.

I guess we just soldier on - as mum said to me this morning 'It's no fun, this dying business!'

Ruth

Hi Ruth,

It's tough watching someone so poorly too. I don't think the stent is a big op and I believe can be helpful but ultimately it's your Mums choice of course.

If your Mum gets very poorly then she could have a syringe driver which would give her pain relief more gradually and also mean they can adjust what is given more quickly. Depending on what the pain is can also mean there might be other procedures that can be used. I suggest contacting the nurses here. My partner used hot water bottles too (I know it's not really hot water bottle weather) and I gave him back massages, both helped.

All the very best

Cathy xx

Hi Ruth,

I suppose these things do have an inherent risk but when I had the stent put in I slept through the whole thing. I was sedated of course but it did seem a relatively minor procedure. It was a great benefit as I couldn't sleep because of the itching.

Ruth

Having the stent made a massive difference to my dad, he felt quite a lot of relief almost immediately and then continued to improve from it. Being jaundiced can make you feel very ill. The actual procedure was fine, he was in and out of hospital in a day. I would recommend that your mum reconsiders this.

My dad also has lots of fluid build up on his stomach and has so far been drained twice, 7 litres the first time and 6 litres the second. This too gives him some relief but does make him feel nauseous the next day. They have told him that they will fit a permanent drain next time and that he can drain it off himself.

Hope this helps x

Hello. Things seem to be going downhill now. Mum went into hospital again last week to have the fluid drained again but they could only take about a pint as it was very painful for her and they were unable to get any more due to the cancer site making things difficult - at least that's what I've been told. Mum is spending most of the time in bed now - and although I've only spoken to her briefly, there is a despondency and weariness in her voice now.

She is spending most of her time in bed now, being cared for my my stepfather.She hardly eats anything and is very depressed about the jaundice. I did try and suggest that the stent would give her a degree of relief but because they would have to 'freeze' her throat & she has a huge problem with gagging, she can't bear rthe tought of going through it all.

Also I believe the GP asked whether DNR forms had been signed, they hadn't so mum has agreed to take that step. We are travelling up on Saturday this week, staying in a cottage nearby for the week, and I'm preparing myself for a shock when I see her, as I know she has lost lots of weight, coupled with her describing her colour as 'like a banana', I know it will be difficult.

We have also the added stress of having a holiday to South Africa booked, departing on September 1st - whether we are insured if we are unable to go, I can't seem to find out in the small print at the moment. We are living day to day, wondering when we'll hear the phone call that says the end is imminent. Until then we have to carry on with life.

Ruth

I know exactly how you are feeling. It is such a difficult time. My precious mum lived for 11 weeks after her diagnosis. Take care and stay strong, thinking of you . Cate xx

Hi Ruth this is such a hard journey. My mum was only diagnosed in May but it is awful! Make the most of your week with her and I hope you are not too shocked.

Just wanted to say stay strong and take care. Sue x

Hi Ruth, just wanted to add my support, and let you know I am thinking of you, as Sue says just make the most of your time together take care sandrax

Thanks for all your kind wishes. Am frantically rushing around getting ready to go to Norfolk this morning.

Spoke to my brother a couple of days ago - he went to see mum last weekend and stayed for 4 days ( all his work commitments would allow at the present)he said I should be prepared to see a drastic change in her, his actual words were (she is skin over bone, like a skeleton albeit a yellow one - from the jaundice!)

I haven't slept much since he told me and am bracing myself to be strong for mum's sake.

It's SO hard when there's nothing you can do - being impotent makes you frustrated and angry - but negative energy is fruitless I know - just have to try to be supportive & loving.

I'm hoping that mum will feel up to talking about funeral arrangements whilst I'm there - my brother was shocked to learn that nothing has been discussed between her and my stepfather. I know mum is a humanist and wants nothing religious but as to whether she'd preferred cremation or burial she hasn't said - in fact when we briefly touched on the subject a few months ago - she said she didn't want either!! I have done some research into humanist ceremonies, and there is a celebrant in the area but as for anything else - it's all to be decided.

Thanks again

Ruth

Dear Ruth,

I am thinking of you. I wish I used this site before my mum died 3 months ago. Try to enjoy your mum if you can it is a very precious time. I said to my mum ' I know you are not going to die mummy but what songs would you like to hear at a funeral' - my parents had nothing planned - her reply was 'I don't know I haven't died before' - bless her. She did proceed to tell me and was all sorted. Take care and lots if love Cate xx

Hi Ruth, I hope you got to spend some nice time with your Mum and got some plans made, we have been away so I am just catching up, take care sandrax

Writing this from Norfolk.

We made the trip a couple of weeks ago and things were tough. Mum was still quite lucid and even feisty however! I was shocked at her physical appearance. So so thin, skin over bone & the yellow skin tone looks dreadful. She was in bed for the majority of the time as she was too weak to get downstairs. She got me to cut her hair though, insisting on getting out of bed and sitting in front of the cheval mirror. We were able to chat albeit for short periods about her time as a telephonist in the GPO & when she was in the WAAF in 1950, training as a Fighter Plotter. We looked at lots of old family photos too. It was very hard to leave her & go home.

Last Sunday my stepfather called to say that there had been a rapid deterioration over the previous week. She was suffering much pain & misery with acute constipation even though the community nurse gave her an enema. She wasn't taking any food or medication now apart from a little water.She was also sleeping/drifting for longer. My step dad said he was having to sleep on a mattress in mum's room as she was waking up anxious & confused during the night.

Luckily he has been able to arrange alternate night care so has been able to get some respite. There has also been some mild sedative left to be injected by the nurse if she needs it.

We have cancelled our holiday as we were due to fly to South Africa on Monday.

The GP visited yesterday and thinks that it will probably only be a few more days as her breathing is becoming more uneven. So today we drove up from London, as did my brother from Gloucester.

Phew - it's so hard to see her now. Apparently she has lucid periods but hasn't been aware of us since we arrived this afternoon. She is amazing us all with her strength of mind though - we heard a clash upstairs and rushed up to find her getting out of bed to use the comode!!!

We're all hoping for a swift, peaceful & painless end for my lovely mum. An end to her suffering and closure for my wonderful stepdasd who has been her sole carer for the last 6 months as this dreadful disease has done it's worst!

Ruth

I hope your mum gets the passing you'd like for, I'm sure she will.

Its so hard at this stage, not wanting them to go but also wanting the suffering to stop.

Take care of yourself.

Julia x

Ruth, I am sure the fact that you and your brother are there will be a tremendous support to both your Mum and Stepdad, and it was lovely that you got to spend some quality time with your Mum. I sincerely hope that your Mum just drifts away, thinking of you all take care sandrax

7:15am

Writing this from mum's bedside. My turn to sit with her so my step dad, who's been with her all night, can get a couple of hours sleep.

Mum was incredibly 'active' last night from 9 - 11pm. She was insisting she get out of bed, without help, just so she could stand up. She tried once, I don't know where she got the strength from, then managed to stand for a few minutes unaided. It's incredible that someone who appears so frail and near death can find such strength and fortitude. Once she had been helped back into bed, she slept again. My brother arrived from Gloucester yesterday afternoon and is sleeping in the caravan! He has agreed to share the 'minding' duties with me.

No health professionals due now until GP visit in Monday afternoon, though we have numbers to call if we should need someone. Night care assistant due at 9:30pm tonight.

I have a feeling that if mum can show so much determination, the end isn't going to be as near as the GP led us to believe!

Ruth

Hi Ruth I feel so sad we are all witnessing this dreadful disease. Thinking of you. Stay strong. Sue x

Ruth, will be thinking of you over the weekend x

Ruth, thinking of you and your family at this time and wishing you and your amazing mum peace. Fiona X

Hello again. Still in Norfolk.

Situation much the same apart from less lucid moments, spending longer 'sleeping'.

She still has an amazing level of understanding at times. Wanted to sit up yesterday, managed with help to stand by the bed and indicated by touching the handle of the chest of drawers opposite the bed.I opened the drawer and she pointed to a comb - I realised she wanted me to comb her hair.

We had a night care assistant last night who sat with her from 9pm to 7am. Apparently mum tried again to get out of bed twice around 5am!

She hasn't eaten for over a week and we give her a few drops of water with a straw, dripped into her mouth now and again. She hasn't taken any oral medication either and just has her morphine patch. She doesn't appear to be in any pain thankfully.

GP visit due again tomorrow afternoon. We're not sure what to do, whether to go home briefly (3.5 hour drive) for a couple of days to deal with the post, get clothes etc & then return or to stay. No one can tell how long this situation may last.

Ruth

Hello Ruth. difficult one not knowing whether to stay or go. Maybe you could nip back for a shorter period to deal with post and get clothes - perhaps an overnight stay? I am thinking of you and am glad that your mum does not appear to be in pain. x

Hi hope everything is ok x

Update: After a difficult weekend for us all - the GP & palliative care nurse both agreed that mum should be given a syringe driver with a low dose of sedative & morphine. This was set up on Monday evening.She was given an intravenous sedative first, as the driver takes 4-6 hours to kick in. This was hard to witness as it was obviously painful for her, given how little flesh she had.

The sedative enabled her to be calm and peaceful and she continued like this, appearing asleep until, last night at about 11pm, when she slipped away, painfree at last. Mum was given a year from her diagnosis in November but didn't quite make it.

We called the number we had been given, and waited until 12:30 for a nurse to come and remove the syringe driver. We finally got to bed at 1:45am, having sat talking and supporting each other, my husband, brother and step dad.

We spent the day so far beginning to get things organised. My step dad is happy for me to deal with people on the phone & organise things. It's all too raw for him.

We are as organised as we can be at the moment. Spoke to the GP this morning who said we could speak to a funeral directors and have mum taken there. They came to collect her about 12:30. The gp will sign the medical certificate at the funeral directors and we will collect it from there tomorrow.

We have taken all the excess drugs she was using to the local surgery, and booked the earliest appointment on Friday at 9:30, with the registrar to register the death and obtain the death certificate.

Have also spoken to Occupational Therapy to come and take away the mattress base, commode, & other equipment etc on Monday next week.

My husband will be going home to London, tomorrow to check things are ok, pick up the post etc & will come back on Sunday, as I am staying here to help my step dad with the arrangements. My brother is also going home to near Cheltenham, tomorrow, he had already booked a caravan for 5 days in the locality from next Monday so will be back then with his partner.

At some point before the funeral (Mum wanted a humanist ceremony) we will go back to London to get ourselves organised for it and come back to Norfolk again. It was 2 weeks after my FIL died before they could have the funeral - depending on the 'slots' available at the crematorium.

We also have to speak to a humanist celebrant about the order of service & what we want and make sure they can attend on the date the crematorium has available.

So yes lots to do - we've already started to clear some of mum's things away - doesn't seem any point in waiting & it's giving us something to do.

Feel a huge relief mixed with sadness and am very numb. Can't even cry

Am very grateful for all the support I've received since I first posted last year. So pleased that mum's misery has ended.

Ruth xxx