Newbie, advice and support please?

[Sammy-Lou]

I'm new to this forum but wanted to find somewhere to discuss my current situation with people who will understand and this seems like the best place! 

My mother-in-law was diagnosed about 2 months ago with Stage 4 pancreatic cancer, for months the symptoms were confused with that of chronic back ache caused by 2 collapsed vertebrae. Since Christmas 2011/Jan 2012 she was complaining of pain in her lower back but only went to see a doctor when it persisted through to March, her GP sent her to the pain clinic who ordered an MRI and X-rays and sent her to the arthritis clinic diagnosing the collapsed vertebrae. She was told the MRI needed to be re-done as there showed a lot of fluid in her abdomen, but this would be a 2 week wait. Luckily in the meantime a consultant at the arthritis clinic saw her and suspected her pain was caused by something else and referred her back to the GP requesting an urgent 2wk referral suspecting cancer.

A blood test immediately confirms cancer as CEA levels 511, her GP ordered a CT scan while waiting for the referral, this takes us to 7 weeks ago.. 

A week later (6 days before her consultant appointment) the hospital call and ask her to come straight in, they have checked the X-rays and found masses in her lungs which are suspected blood clots and need to be treated urgently. She is taken in on that Friday and put on fragmin to thin the blood, a high dose and told she will be spending the weekend in hospital, by the Monday I went in to wait to speak to the Gastric consultant assigned to her care, we were hoping to find out which cancer and what could be done, optimistic for treatment. There the consultant explained she has pancreatic cancer and many blood clots in her lungs, he saw the immediate risk being the blood clots and although the oncologist wanted a biopsy this would have to wait until she'd had enough fragmin to take her off it for a couple of days to safely perform the biopsy, this would be done towards the end of the week. 

By Tuesday my MIL was looking more bloated than usual; she had been on a concoction of pills since March including Tramadol, Diclofenac and morphine patches (for the collapsed vertebrae) and so hadn't been eating much as they made her feel sick so she had lost an incredible amount of weight whilst had a swollen belly. We mentioned the bloating and were told this would possibly be fluid, we mentioned the MRI and the fluid (from 3 weeks ago) why hadn't someone picked this up, I guess it's just one of those things, we didn't really get an answer but were told they could put a tap in to drain the fluid, they would also test this.. Later that day they drained almost 5 litres, this made my MIL much more comfortable and we started to feel more positive that perhaps the fluid was what was making her so uncomfortable as by this point she could hardly even lie down the pain was so bad, she was almost constantly doubled over. They decided there was enough of the fluid to confirm that the cancer was advanced and so they decided to allow her to come home and return the following week to have the biopsy and see the oncologist to discuss the next step.. 

My husband and his brother attended the oncologist appointment with their mum and were told that she has stage 4 pancreatic cancer with mets in her lungs and that her prognosis without treatment would be 3-6 months. She is only 60 and so they could offer her either a less aggressive chemo which could improve the prognosis to be 6 months to a year or she could choose the most aggressive chemo, a combination drug which could give a year to 18 months.

She had decided within 4 days to accept the most aggressive and to fight for as much time with her 3 grandchildren as possible, further investigations confirmed the tumour to be quite large and in the head of the pancreas and encasing the bile duct, this would explain why the jaundice was so bad. 

Now we just had to wait a couple if weeks to get an appointment to have a Hickman line fitted. In the meantime, she'd be at home on twice daily MST and topped up with oramorph, anti-sickness tablets and diclofenac along with daily fragmin injections.

Her appointments came through, last Monday, to see the cancer nurses, Tuesday to fit the line and Wednesday to start the Chemo.

She got to the appointment on Monday expecting to be in and back home quite quickly but they decided to admit her, the fluid was clearly back and her pain not under control, she had an awful night vomiting and in real pain (She mentioned to my husband the next day that at times she didn't think she would see the morning, she's an ex- nurse and rarely complains, we knew at this point it was bad). They fitted the drain on Tuesday and delayed the Hickman line, over 8 hours they slowly drained over 8 litres more fluid and spent the next 12 hours replacing fluids with a sodium IV. 

Late on Tuesday the decided to fit a pic line instead and delayed her fragmin, they struggled with the line as she is now so thin and has no muscles, the veins kept moving. After another night in and more IV fluids they started the chemo Wednesday eve at 5pm, oxaliplatin to start and then 5FU and a polyfuser which would stay on for 44 hours, my husband left her at 5.30 when his brother arrived as he'd hardly left her bedside since taking her in on Monday. He returned on Thursday morning at 10.30 and instantly noticed her speech to be slightly slurred and she was a bit confused, he told the nurses who seemed concerned and called for the doctors, they told my husband she had suffered a TIA or mini-stroke and took her for a brain scan. It was a relief to hear that from the scan they could see the cancer had not spread to the brain and neither was there any bleeding in the brain so the cause of the TIA would be a blockage elsewhere, possibly caused by a travelling clot, they would stop chemo immediately and await a referral to a TIA clinic for advice. She was kept in hospital until the Friday and allowed home, an appointment for the TIA clinic booked for the following Wednesday (today). 

On Sunday my brother-in-law called the cancer centre she'd left on Friday to ask about her constant vomiting and bringing up blood, worried it was a side effect of the chemo and they called an ambulance straight away. She has an internal bleed and her red blood cells and white blood cells are critically low, they performed a blood transfusion on Monday and requested an endoscopy to find the source of the bleed, she has refused the endoscopy as she's in too much pain. The blood transfusion has improved her slightly but she is still in so much pain, hardly able to speak and very weak. Yesterday they started a 12hr phosphates drip and continue with constant IV fluids. 

She has told her sons that she no longer wants to continue the chemo and that she's not sure how much longer she can go on, she seems to be giving up and has put a no resuscitation order on herself.

It is heartbreaking to see her deteriorate so quickly in such a short space of time, my husband and his brother have been through so much loosing their father to lung cancer 15 years ago (my husband is 30 now). He seems to be coping well and understands his mum wants to stop chemo cos he doesn't want to see her suffer, I'm just afraid of what is still to come. We live an hour away from her and she has always been so independent, I just don't know what to do for the best to support both my husband and his mum. I'm worried about her care as we move forward, and also how my husband will cope as the inevitable draws near. 

We have a daughter who is 22 months, I know she is quite small but she is very clever and says "Poor Nanna, Nanny sick, love you Nanna" when my husband leaves to go to her and I've no idea how to help her understand.

Sorry this has been such a long post and thanks for reading, any words of support of advice about what to expect will be so gratefully received! 

I'm hoping someone else has had a similar journey...

Thank you 

[DRAD3]

Hi Sammy-Lou

I am so very sorry to hear your story and how ill your mother in law is. My heart goes out to you. You will no doubt have read other posts which tell a similar story. It is very worrying how quickly things have deteriorated with your MIL and her not wanting to continue with the chemo is understandable after such a traumatic and painful time. I guess you just need to be clear about what is going on, the prognosis and what to expect so that you can put into place arrangements for her care, especially as you do not live nearby and you have your own young family to take care of. Just get as much information as possible, perhaps ask her to authorise asking questions she may not particularly want to know but that you need to know. Ring or email the support team directly at PCUK if you need information and support specific to your MIL as I could tell you of my experience with regards to my husband but every one is very different and it may not help or only confuse you. Do get as much support as you can. So very sorry again, we are here for you to offer support and send you love and strength. I do hope that your mother in law is made comfortable as soon as possible.

love

Deb

x

[Sammy-Lou]

Thanks for your reply Deb.

I know your right and I'm scared of the unknown, I don't know what to expect and its totally out of my control. What scares me more than anything is the prognosis, if without treatment we can expect around 3 more months then I am scared for her as to what is to come, she is already in so much pain and so weak, I suppose no-one wants to see someone they love in so much pain, I just don't see how it can get much worse..

Thanks again for your response, I'm sure I'll be updating regularly as each day seems to throw up another confusing and difficult symptom to deal with along this awful journey!

S x

[laura]

hi sammy-lou, so sorry re your reason to be posting on here, we will all try and be helpful, and definateley supportive to you all, not much really you can do, certainly unable to change diagnosis, times given by drs are an average, as everyone is differant, if you get mil home have you, can you. get a macmillan or pallative care nurse in place,?. they are so good and helpful, with liasing with drs, specialist, and sorting out pain control QUICKLY !

try and be the loving caring wife and daughter in law that you are, its not easy with so much happening, perhaps you could take your daughter in to see her nanny, it will help your daughter to understand a bit, seeing nanny in a differant bed etc, do spend as much time with her and let your mil know shes loved, difficult one

sending you strength to your hubby as well and my love laura xxx

[charney]

having gone through something similar recently my thoughts are with you and your family. You feel so useless, but just being there and being supportive for your husband and MIl is the best thing you can do. I too worried how my Husband would cope but he has been amazing and has surprised me. This truly is a wicked disease.

Hugs and best wishes

cheryl xx

[DRAD3]

Hi Sammy-Lou

I think Laura is right to say chase palliative care and prioritise the pain control. The palliative care teams are absolutely fantastic not just in providing medical support but also in providing emotional support not only for the patient, but also for their families. They were completely frank with me about what to expect but in a way that did not scare me or upset me and they allowed me to care for my husband in the way he had wanted, i.e. at home. Try not to think too far ahead, as it is impossible for anyone to second guess this disease. I was in constant contact with PCUK's Jeni and she was invaluable in helping me understand what particular symptoms might indicate so I was always ready for everything. My philosophy has always been "knowledge is power" and I probably knew too much but nothing that ever happened surprised me or floored me and because of that I was always able to keep calm so that I could be my husband's rock. I hope you are coping OK with worrying about all your loved ones. Sending love and strength to your mother in law, to you and your family.

love

Deb

x

[Sammy-Lou]

Thanks so much for all your kind words, it means so much to be able to 'talk' and have someone there to 'listen'

I often feel like I'm being selfish needing support but I'll be no use to anyone if when the time comes I'm on the floor. We have had little progress today, still in pain and they are now saying that the risk of infection is far to high to do the endoscopy, visitors are kept to a minimum and gowns and gloves need to be worn. The fluid build up is quickly becoming a major source of discomfort again so they'd like to fit a drain and possibly a permanent one this time but can't until her red and white blood cells increase as they are still at a critical level. Yesterday she was shaking in so much pain, but is stuck in a position where the doctors can't even look for the source of the bleed while she's this sick, I just feel like its catch 22, how will she improve while she still has a bleed? Then it's the issue of refusing the endoscopy..

They have now started to give IV through her pic line as both cannulas stopped working, either moved or veins collapsed. Wish I knew what all this meant.. I'm the same Deb, knowledge is power.. I just wish I had both right now!

All the best to you all and thanks again xx

[yorkypaul]

Hi Sammy-Lou

So sorry to hear of your tragic situation. I am unable to offer you informed advice as I am new to this awful situation myself. I would suggest that you use this site as a support mechanism and also as a way of finding valuable information.

Sending my thoughts, prayers and best wishes to you and your family.

[Sammy-Lou]

Hi everyone, I've just spend the best part of the last hour looking back through your stories amongst other posts and have had tears in my eyes.. Such an awful awful disease. Cheryl there are so many similarities between our stories, can I ask how your MIL is doing now? And how is your husband?

Laura and Deb, you ladies are amazing and the strength you have shown in your support to everyone on here is fantastic! What wonderful women, thank you for replying to me, I'm very touched to receive such love from strangers.

Yorkypaul, thank you for your kind words, I suspect I will be using this forum more and more regularly, the last few days it has helped so much, even just to write everything down. Wishing your fiancée all the best for her treatment, like so many others you have had your share of heartache already in life, PC is so cruel and I hope one day there is a cure so nobody has to go through all this..

Love and hugs to all xx

[susikus]

Oh Sammy-Lou, this is sooo hard isn't it? You must feel helpless, trying to keep it all together at home, while feeling so far away. And while your m-in-law is in hospital it will feel difficult to know what is happening and why. Keep asking questions and giving lots of support, and take support for yourself too. I think we forget the strain on those caring for carers, it isn't just the next-of-kin. Do you have people around you who can support *you* Sammy-Lou? I think we need a group hug - you, me and Yorkypaul - everyone else welcome to join us! Lots of love, Sue

[charney]

Hi Sammy Lou

Im sorry to say that my MIL died on the 26th August after suffering multiple

strokes but everyone is different, there are some positive stories on here as well as

sad ones. My Husband has his sad moments but is coping very well, everything is a bit surreal at the moment. I hope they can finally sort out your MIL s bleed and make her more comfortable and out of pain.

Big hugs

cheryl xx

[PCUK Nurse Dianne]

Hi Sammy Lou,

I am sorry to hear of your MIL's current condition and appreciate what a difficult time you are all having. It is nice that your 'forum family' have been supportive for you. If we can help with any questions or concerns please do not hesitate to contact us at the support line (support@pancreaticcancer.org.uk or 020 3535 7099).

Kind regards,

Dianne

[DRAD3]

Hi Sammy-Lou

So sorry to hear what an awful time your mother in law is having. If only there was a magic wand. I do hope there has been some improvement today and the doctors have been able to make her more comfortable. It is a truly awful disease. You must be so, so worried and desperate to help her. Know that we are thinking of you and understand how you feel and are always here to listen. Do take Dianne up of her offer - the support line are fantastic.

lots of love

Deb

x

[Sammy-Lou]

Thank you so much everyone and I may take the advice to call the support line!

Cheryl, I am so sorry, I really should have read more posts before I fit over emotional and had to stop. I'm so sorry for your loss and hope your husband is coping ok? Even though it's the inevitable I think

That it's one of the things I fear the most, my husband not coping.. Of course I worry about my MIL and all she has to go through but I know there will come a point where I am responsible for picking my husband up off the floor and carrying him, for as long as he needs me to.. Will I be good enough and can I be all that he needs me to be?

My heart goes out to you and your family...

Today my poor MIL is worse, in so much pain and the doctors still can't do anything to help her, they are waiting for her red and white blood cells to improve and then the first thing is to look for this damn bleed.. Still no fragmin so the thought that if the cancer doesn't get her then there is every chance the bleed or the blood clots might cause another TIA or worse still a full stroke! A palliative care nurse came to see her today and said they'd speak to the doctors and ask for her MST and oramorph doses to be increased, finally looks like they are dealing with the pain! Hopefully this will be sorted in time for tonight's dose, my husband is with her now so I'm waiting to hear...

Such a difficult road and worse still to come..

Thanks again everyone and love and strength to you all xx

[laura]

hi sammylou, its good that pallative nurses are involved they can sort the meds out real quick, for mil, am sure when the pain is under control you will all feel better, constant pain drags the best of us down.

i am sure your hubby will cope, as will you, something kicks in when faced with difficult situations, you will find you are both much stronger emotionally than you think, of course your both sad for the problems mil is dealing with, let her know shes loved, just holding her hand can be so comforting for you both,

stay strong, love to you all. love laura xxxx

[DRAD3]

Hi Sammy-Lou

So glad to hear the palliative care nurses are on the ball and making sure that your MIL is as comfortable as is possible. This really will make all the difference. Do not worry about whether you will cope in being there for her or for your husband - you will be absolutely fine as you have been so far. You will realise now how much strength you have and this will see you through, I promise. Take care and love to you, your MIL, your husband and the rest of your family.

Deb

x

[Sammy-Lou]

My husband is with his mum now and she's having a real rough time with sickness at the moment, it dies seem like her pain is under control but she is vomiting lots and worse after drinking or eating (the little she is) Today she has had some cornflakes (this morning) and a cup of tea (at 2pm) but has vomited since. I have read lots about other people who suffer terribly with sickness having a stent put in to help with the bile, I'm just wondering if we should ask why this hasn't been offered to my MIL as she has suffered with nausea and vomiting since she was diagnosed? Any advice would be great, thanks x

[laura]

hi sammy, so sorry mil is having so many problems, all so very draining isnt it? talk to the pallative nurses they may suggest different meds for the nausea, or can pursue for you, the question of a stent, i know its a shot in the dark, but feel sure someone on here used sea sickness bands and found they helped!

do hope you get it sorted. love and best wishes to you all, laura xxx

[Sammy-Lou]

Just to update - my mother in-law is being moved to a hospice today or tomorrow as her bloods have finally started to pick up so she's at less risk of infection. She will be having the drain fitted for her ascites at the hospice as its been making her do uncomfortable since they took the 8 litres. She has started to look a bit better and has actually tried to eat a little over last 2 days which is amazing. Thank goodness for a great palliative nurse who sorted her pain relief as this seems to have been the turning point! We are hoping that it will be a short stay at the hospice this time and that she will get a few good weeks at home before having to go back in there as she has told my husband that is where she would like to be for her final days. I'm sad she has chosen not to continue with chemo but I completely understand her reasons and just hope she is comfortable until the end.

Thanks again for the love and support I have been shown here xx

[DRAD3]

Hi Sammy-Lou

So glad to hear the palliative care nurse has helped so much - they are truly wonderful aren't they? My husband was so anti palliative care - he saw accepting them into the house as the beginning of the end but I thought they were wonderful and really concentrated their and our efforts on the quality of life which really becomes so much more important towards the end. It is lovely that your mother in law is happy in the hospice and has expressed her wishes to you to be there when the time comes - it makes it so much easier for us carers to not have to try and second guess and worry about making the right choices for our loved ones. So loving of you to understand her choices and stand by her, difficult though this must be. Continuing to think of you and sending love and strength.

Deb

x

[Sammy-Lou]

My mother-in-law has been in the Hospice now since Thursday and I'm so relieved for her, it seems like a wonderful place where she will be looked after and allowed to relax. I can't thank her palliative nurse enough for arranging the hospice so quickly and getting her pain under control. Her ascites is very bad though and she has had terrible swelling in her legs for over a week now, her palliative nurse discussed with me the possibility of not draining it as it is reaccumilating so quickly, in a nicer way she kind of said it was questionable how worth it it would be! She has been put of a duritic to hopefully help. Her sickness and nausea is still terrible too, although shortly after her anti sickness meds she is able to manage a little to eat. The hospice is lovely, only 12 beds, each room looking out onto a beatiful garden which is great for her as she adores her garden at home, it's do much more comfortable than the hospital and at least they can manage the symptoms better there. Our little girl (22 months) has a rotten cold so we've had to stay away and my husband is staying at his mums so he can stay germ free and still visit, I'm finding things hard without him at home much although I know I can't complain and even feel awful for thinking about myself.. We have been trying for baby number 2 since before mum got her diagnosis, we spoke about maybe stopping but decided we had to carry on with life, however hard it is to think of the future, each month the disappointment I feel about but falling pregnant is getting harder, a sadness I can't burden my husband with.. I'm just sat at home alone and feeling so sad, sad for us and sad we still can't give mum the good news which may help her fight this.. I know that's not important.. I feel bad wanting that little light in our lives..

[laura]

oh sammy-lou, am so sorry your feeling so lonely, really understandable, we all have our needs, irrespective of whats going on, so please dont feel guilty, cos it wont change anything, will it?

am pleased for you all that your mum in law, is where she wants to be, cant ask for more than that, and your happy with the care shes getting, so all good there eh?

perhaps your not meant to get pregnant yet! once all the stress has gone from your life, hopefully you will be more relaxed and nature will kick in? and then you will have a new focus,

we all care about you sammmy, your not alone , and all will work out in the end im sure.

love and hugs laura xxxxxx

[charney]

I am so sorry Sammy Lou, I feel for what you are going through at the moment but your MIL is in the best place, and as Laura says I am sure when things have settled and your stress level is not so high you will have good news. Keep strong

love and best wishes

cheryl xx

[DRAD3]

Hi Sammy Lou

It is totally understandable that you are desperate for a little light - you have been so worried, sad and lonely without your husband, looking after your poorly little girl on your own - you must have felt like you were in a dark corner, what else would you want but a chink of light? Do not feel guilty - it is not wrong to hope for something wonderful to happen - and it will, Sammy Lou. I am so happy to hear how lovely your mother in law's hospice is and how settled she is there with some pretty views and good care - it seems like they have her very best interests at heart which must be reassuring for your husband and you. Do not beat yourself up - you are going through an extremely difficult time and managing amazingly well. Keep strong and keep the faith that things will turn out for the best. As ever, we are here for you.

Much love

Deb

x

[Sammy-Lou]

Thank you so much for your endless support, I have had a few dark days but your kind words have helped bring me out the otherside along with my husband coming home last night for a couple of nights. I'm feeling better about things today, funny how some days it just all gets on top of you and yet others you manage to get by ok. Anne, my mother-in-law is being well looked after at the hospice and I'm hoping to be able to visit at the weekend, I think it has been getting to me that I've not seen her aswell, feel so helpless so far away. Yesterday a consultant visited and spoke about trying to reduce the swelling in her legs, he didn't mention how and she is already taking a duritic so not sure what he will do but I really hope it helps. A family liaison nurse came to see her and gave her 3 memory boxes to put together for her 3 grandchildren.. I almost cried for her when my husband told me, that must have been really hard for her, I know she loves them all dearly and the thought of missing out on their lives must be breaking her heart! I think the memory boxes are such a lovely idea, I've been thinking of what else we could do, my parents are coming to visit today with lots of photos they have found, some of my daughter with her Nanna on the day she was born and her first christmas. I will be going through our photos too, I thought I could maybe make a memory journal for my little girl as she's only 22 months and I just want her to know the wonderful lady her Nanna is! I also thought about going to one of those build a bear shops and having teddies made for the 3 children, even getting those sound boxes to put in them, their Nanna always says 'Remember.... I Love You' when we leave her house so maybe she could record that so they could have a lasting memory of her voice so they will always know how much she loved them x