Dealing with Mum's diagnosis...

[CurlyLittleMiss]

This is my post from earlier, copied on to here as I piggybacked on to another thread:

Hello all,

I hope you don't mind my addition to this conversation but the title caught my attention.

My mum was diagnosed with pancreatic cancer on Christmas Eve and since then "lost" is pretty much the word that sums up how I feel.

Her diagnosis came as a complete shock to all of us, as we'd been told it was probably gall stones causing her symptoms. Looking back now, I can see that's what her GP wanted it to be, but I cannot praise him enough for how quickly he got in touch and got mum back up to the hospital when her blood tests had obviously shown something else.

Mum ended up being in hospital for a month fighting an infection and having various attempts at procedures to insert a stent to help clear it. She has now been home for just over two months and my dad has done such an amazing job at taking care of her, but it still breaks my heart every day to see them in this situation. I'm struggling to cope with seeing my bubbly and lively mum having to summon the energy to get to the bathroom and having naps every afternoon.

Yesterday we went to Guy's to meet with her consultant to make a final decision as to whether mum had chemo or was discharged back to the local palliative care team. Although we knew she had already made her mind up, actually hearing her say to the Dr that she didn't want the treatment made it all become that bit more real that we are losing her.

The selfish part of me wants her to have treatment because she's my mum and is far too young at 59 to be going through this. The more realistic and level headed part of me knows she has made the right decision for her. Although she is weak and has lost a lot of weight, through sheer bloody mindedness and determination, she has got herself back to a stage where she can do a few more things for herself and doesn't want to lose that by putting herself through chemo which she has been told will make her feel ill. This is one of the only things mum can control in this horrible situation.

We obviously all want the miracle cure and get her back to how she was before, but we know that isn't possible. We just need to be able to enjoy the time we do have together and get her out and about when she feels up to it, visiting the places that brought us all happy times as a family. In her own words, she is 'content' and somewhat accepting of the situation. I think she has handled it better than the rest of us, but as she said, it's happening to her so only she knows how she feels and it's worse for the rest of us on the outside looking in.

I just feel so useless. I know I'm doing everything I can, but it just never feels like it's enough. I am lucky I have very supportive family and friends, and my boss is doing everything he can to help me, especially as we have my elderly grandfather to look after as well after his bout of ill health. It is all just so unfair. Mum has never smoked, barely drinks (although she did say a nice G&T would have been lovely the other day!) and has generally been in good health all her life. As horrible as it is, it is comforting to know there are others out there going through similar things.

I didn't realise quite how much I'd rambled on, but it feels good to get it all off my chest again. The local hospice has been good, providing a social worker/counsellor to come and speak with us and she always gives us a lift. She manages to get all the emotion out of you but still leave you with a smile on your face when she leaves.

CurlyLittleMiss

Posts: 1

Joined: Thu Mar 31, 2016 11:25 pm

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[Guest]

Hi,

Thank you for posting. A place none of us wants to be, but is the only place where we all understand more than anyone.

I am so sorry to read your Mum's diagnosis, and so very young. My own Dad was diagnosed at 61.

Has your Mum been offered chemo? I know it her decision and that chemo is tough, and it really can buy precious time. What has the consultant said?

How is your Mum's appetite? Is she taking creon?

This disease is just the cruelest and you have to be very strong at times. We all know what you are going through, you are not alone here.

Leila xx

[Sueoliver]

Hi,

I am sorry to read of another Mum being diagnosed! My Mum, although older than yours, fought bravely for 19 months! You can read my story on the thread "Mum's diagnosis" . If I can be of any help at all I will try. I supported my Mum through the whole journey so I know how you are feeling right now.

Stay strong but look after yourself as well. Thinking of you.

Sue x

[CurlyLittleMiss]

Thank you both for your replies.

Mum was offered chemo, but they said physically she was borderline where the negatives would outweigh any positives, plus the fact that she would have to keep going to Guy's rather than to one of our local hospitals put her off. She is very accepting of her diagnosis and wants to keep herself as healthy as possible so that she can enjoy herself, so felt that chemo wasn't in her best interests. Although I fully understand and support her decision, as well as knowing I probably would have come to the same conclusion in her situation. It still makes me so angry that there's nothing that can be done apart from making her comfortable when the pain gets worse.

Mum is taking steroids to help boost her physically and thankfully her appetite has come back with a vengeance (shares in Hartley's jelly will go through the roof soon with the amount she's eating!) and has to have daily injections of claxene(?) as she developed clots on her lungs while in hospital, but she is currently able to manage any pain with something beginning with 'f' I think-too many names to remember especially with all the medication my granddad is on too!

Mum Is able to walk and bit more and is wanting to go out, even if it is just for a walk around the garden. Mum is tough and stubborn despite her short stature and will give it everything she's got. In all honesty it's the infections that she picks up that remind you she is ill. When she has a good day you almost forget what's going on.

hopefully today is a good day

[Didge]

Go with what your mum wants. If she wants to go out or do anything at all, try to support her - never say "you're too ill, weak etc." in other words put your worries aside. My partner had 2 raucous parties in the last 10 days of his life in the hospice! And managed a full day at Silverstone less than a month before he departed. I do hope she has many more outings whether it is round the garden or somewhere further afield. That is what 'quality of life' is all about! Didge x

[CurlyLittleMiss]

Didge, your partner sounds like mum's type of person!

I would also never dare tell her she can't do something, even at 29 she can still terrify me! But thankfully, she knows her own limits, she knows to pace herself and tries to have visitors every other day so she can have a 'lazy'day in between. CLM

[sheena]

Hi sorry to hear about your mum .my hubby had a relatively good 10 months of doing everything he wanted .He is stubborn and pushed himself every day to do his own thing,sadly we are close to the end but he put up a good fight for 13 months.let your mum go with the flow I am sure she will surprise x

[CurlyLittleMiss]

Hi Sheena,

I'm sorry to hear about your husband, but hopefully seeing he was able to do most of what he wanted is of some comfort. Mum is extremely stubborn and knows that only she can push herself-we know there is no point telling her what she can and can't do! She does set herself little targets for the day or week. Yesterday's was to sit at the dinner table for lunch, something she's not been able to manage since she came home. I know my dad was pleased not to have to eat his Sunday dinner off a tray on his lap!

I sometimes think because I see mum every day I don't always see any improvement (although the 'bad' days are certainly noticeable) so it is nice when we have visitors who haven't seen her for a few weeks and they say they can see the difference, it certainly makes her feel happier too.

I think having made a final decision about her treatment has been a relief. She hasn't got to psych herself up for trips to the hospital and can do her own thing. Mum being mum is still more concerned about the rest of us than she is about herself! CLM x

[sandraW]

Hi CLM,

How you mum feels about things is the most important, and as a brave lady she will always worry about you all first before herself. good for her doing her own thing and being stubborn gets you a long way.

Its good to hear she is feeling stronger and lets hope we get some nice weather as a bit of sun always seem to make you feel better.

Take care of yourself too you will need to be strong for this journey, sandrax xx

[Proud Wife]

Hi CLM

So sorry to hear your Mum's story. 59 is far too young. Your mum is so very brave to refuse chemo but I can totally understand why she would want to chose quality over quantity. Such a hard decision to make but I am sure it's the right one for your mum. All we can do is respect what our loved ones want.

We are here to support you in any way we can.

Love PW xx

[CurlyLittleMiss]

Proud Wife, as hard as it was to hear mum tell the Drs her decision, hearing them agree that it was the right one for her made things slightly easier.

Sandra, my mum is one of the most stubborn people I have ever met (can't imagine where I get it from..!) and is determined to do things her way, including cooking dinner when she can.

She has been in a little more pain this week, but thankfully she was only on a low dose of her painkillers so they were able to up the dosage for as long as needed.

Mum has had lots of visitors this week (she previously worked in a school, so all her colleagues who are on holiday have been booking in their slots!) and has pretty much told me to go out and enjoy myself this week, which has been hard, but I've managed. Although there were still those feelings of guilt afterward for enjoying myself when all this was going on.

I saw the parent of a friend of mine today, who coincidently had grown up in the same flats as my mum. We had the usual "how's your mum?" conversation and filled him in on the details since we had last spoken. I'd said that we were working together to make sure my dad wasn't shouldering the whole responsibility for everything and making sure he looks after himself, and then he asked me, "Who is looking after you?" It's one of those things, everyone says make sure you look after yourself etc, but then it struck me quite how much my best friend is looking after me right now. without him, I think I would have completely fallen apart months ago. Mum has always said you meet everyone for a reason and now I think I understand why we met when we did, so that he would know my mum before she became ill, in order to help me be strong enough now. CLM

[Jim]

Hi CLM

Saw your posts & we are in the same boat at the moment with our mum. Surprised how good her appetite is, I'd have thought it would be the other way but I'm glad as she is really enjoying her food. We are glad our mum is home now after a month in hospital.

[CurlyLittleMiss]

Hi Jim, sorry to hear you are also experiencing a similar situation with your mum. I will say as hard as it has been, it has been so much easier to cope without the daily visits to the hospital. I hope your mum is glad to be back in familiar surroundings, it's certainly made a big difference to mum. CLM

[shelda]

Hi CLM, I've not been on for a bit but definitely been thinking of you all. Everything such a rollercoaster with this cancer!!! Glad to hear you have some great support, I try to be very blinkered and focus on what mum needs, but I know I have good support if needed and this forum is definitely one of them. Love to you and your super brave mum xxx Shel xxx

[PCUK Nurse Rachel C]

Dear CLM,

Welcome to the forums, although I do appreciate its not the place anyone wants to be. It is good that you have felt able to post, and I am sure you will find this a very supportive community and can see that you have made some bonds already.

I am very sorry to hear about your Mums recent diagnosis of pancreatic cancer, so our thoughts are with you and your family at this very difficult time. My name is Rachel and I am one of the nurses working for the charity and please do not hesitate to get in touch if needed.

As I mentioned above, I'm sure you will find this forum community a great source of support and comfort.

Best wishes,

Rachel

Pancreatic Cancer Specialist Nurse

Support and Information Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[CurlyLittleMiss]

Hello all.

Mum has been very up and down the last few days. I think she is just absolutely shattered from all her visitors. She loves them at the time, but then pays for it the next day. An old friend has just popped in and two of her sisters are visiting tomorrow and Saturday. You can tell she is struggling, but most people are pretty good at only staying for a little while and she has learnt how to get rid of people politely!

She had a hospital appointment yesterday for a check up on her injections for her clots. She said she had to go to bed again as soon as they got back as the walk from door to car had wiped her out (but she was excited to use her blue badge for parking st the hospital!)

I guess I'm struggling a little more at the minute. I think because her highs are really high, the slightest come down has a knock on effect on the rest of us. She is just so weary and sleepy this week. However,, her appetite is still going strong-she's suddenly developed a craving for curly wurlys, so I think as long as we supply those, we'll be fine!

CLM

[Dandygal76]

Hi CLM, my dad was recently diagnosed at 62 and also like your mum was so healthy and fit. It is a hard place to be and I get the chemo decision - it is a very personal thing. I think if it were not for my 16 year old who relies on my dad as a father then he would perhaps have made different choices - he certainly would have told me to leave him alone with my relentlessness! It would be nice for him to see my 16 year old off to university but first we just need to get through the GCSE's next month.

I know it is not for everyone but I read a good book called anti cancer - a new way of life (https://www.amazon.co.uk/Anticancer-New-Life-David-Servan-Schreiber/dp/0718156846/ref=sr_1_1?ie=UTF8&qid=1461098903&sr=8-1&keywords=cancer+book+anti). This was written by a doctor who suffered with cancer (not pancreatic though). There is an interesting part / case study of the book where advice had been given to a pancreatic cancer patient who lived a fairly long time with lifestyle / supplement regime. I am not saying it will help but I found the book quite empowering - it was the 1st one I read and it just lifted that feeling of powerlessness. My GP, who's wife also had cancer, also swears by the book. There is no right and wrong answers on this... we are all just feeling our way around in the darkness. Good luck and keep us updated. I feel for you at 29. I am 40 now as my parents had me young... your mum is too young to have this... but 29 is also a horrible early age to lose your mum. x

Edited April 20, 2016 by Dandygal76

[sheena]

What ever she fancies then let her have .Steve had a craze for bitter lemon drinks can't believe how much he drank ,he also loved lemon sorbet so I guess he was into sharp tasting things .Steve was stubborn to and I believe that's what kept him going 3 times the Dr said he only had hours to live but proved them wrong and lasted a week now that's truly stubborn .love to you and your precious mum x

[Dandygal76]

Apologies as well... I did not realise the thread went to 2 pages and did not see your last post. I hope your mum is feeling better - visitors can be tiring. Sheena is right... whatever she wants. Take care of yourself as well. x

[Proud Wife]

Hi CLM,

How's your mum doing? Hope you are keeping the curly wurlys coming thick and fast. xx

[CurlyLittleMiss]

Thank you all for your messages.

Dandygal, the book sounds interesting and may well be worth a read.

Unfortunately mum has been suffering a lot more pain in recent days. She finally gave in and let dad call the hospice nurse on Monday who was there within the hour to check her over. Her dr phoned while the nurse was there and they agreed on morphine capsules, one every 12 hours and in liquid form in between if needed. She said it really makes a difference to the pain and her spirits, she's got the devil in her at the minute! But you can tell when it's started to wear off as she gets very frustrated and teary.

It's also making her rather drowsy, so you have to piece parts of conversations together and try and make sense of what she has said-we spent 15 mins tonight talking before we realised we were talking about two different people after she started one conversation and moved on while I was doing the job she gave me!

She just looks very weak at the minute. Even though deep down I know she's ill, because her highs had been so high and for a fairly long time, I think we all forgot how I'll she really was. But we need to deal with the new development, and develop a 'new normal' around that now. The sense of humour is still there though-I had to buy a new bottle of perfume for her yesterday. Her response to how big a bottle was: "I'm not planning on going anywhere just yet, get me the big one!" That's my mum!

CLM x

[Dandygal76]

What a fab answer... I hope you bought her the big one! I am a complete novice at this and will let the nurses on here go into any detail and say if I am speaking about something not viable but if the pain is localised to the pancreas then is there not a nerve block procedure they can do that would make your mum less drowsy but can take away the pain? I really don't know too much on it but worth an ask perhaps? If they say no then nothing changes but if you don't ask sometimes you don't get in my experience thus far. Also do tell me if the views of an amateur dr google queen are not helping or making things worse - I am not precious and would never want to exacerbate things for you. x

[CurlyLittleMiss]

From the way she is sitting with the hot water bottle, I think the pain is slightly higher up, but certainly worth mentioning when the dr comes in tomorrow, so thank you.

She's getting frustrated because she knows she's talking nonsense quite a bit (even more than usual!) and we have to try and piece it all together but at least the pain seems to be being kept at bay most of the time. She has also found that her skin is very sensitive/itchy at the minute which probably makes her grouchy as well, especially where she's spending longer in bed during the day.

But I did buy her the largest bottle of perfume the shop had in her desired scent

CLM x

[Dandygal76]

If she is itchy then perhaps she is starting to get jaundice - does she have a stent? Perhaps they need to test her blood....

http://www.cancerresearchuk.org/about-cancer/type/pancreatic-cancer/treatment/advanced/stents-for-jaundice-in-pancreatic-cancer

xxx

[PCUK Nurse Chris]

Hi CLM, Thank you for keeping us updated on your mum and sorry to hear some of the issues she has had in relation to her illness.

Some pain associated with pancreatic cancer can be neuropathic in nature (nerve pain) and is due to the pancreas sitting in front of a bundle of nerves called the coeliac plexus. Tumour growth and bulk can press or invade these nerves and can cause a dull, tooth-ache like pain or pain that is referred onto other areas of the body such as the back, legs or shoulders. Whilst morphine based drugs may help to control the pain other pain relief medications called adjuvants may be considered. These are drugs that although not originally used for pain relief have found to have pain relieving properties. Examples of these medications are Amitriptyline, Gabapentin and Pregablin. You may find it useful to discuss the use of one of these with the GP or consultant that manages the treatment and care of mum to see if it helps with the pain. An alternative maybe to explore the possibility of a nerve block as mentioned by dandygal76. If it is nerve pain from the tumour pressing on the coeliac plexus nerve bundle then sometimes a nerve block can be considered to help relieve the pain, but this is only after other therapies have proved ineffective at symptom control of the pain. The procedure involves injecting the nerve bundle with an agent, usually alcohol, which then destroys the nerve bundle and relieves the pain. You could also discuss with the consultant who manages mum’s care about suitability and effectiveness of the procedure in her case and if it is appropriate. You may also wish to request a referral to either a pain management team or a hospice for mum as both are excellent at managing pain that proves difficult to control.

The itching could be a result of jaundice, other signs that she is jaundiced include yellow skin, whites of the eyes and abdominal pain. The itchiness could also be a side effect of the morphine and switching to a different type of morphine may alleviate the symptom. It is certainly worth discussing the symptom with a specialist to determine the cause and find a remedy.

I hope this information proves useful and please phone our support line (08088010707) if you wish to discuss anything further.

Chris

Pancreatic Cancer Nurse Specialist

Support team

Pancreatic Cancer UK