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CurlyLittleMiss
Posts: 23
Joined: Fri Apr 01, 2016 12:25 am

Re: Dealing with Mum's diagnosis...

Postby CurlyLittleMiss » Thu Apr 14, 2016 7:00 pm

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
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Dealing with Mum's diagnosis...

Postby Dandygal76 » Tue Apr 19, 2016 10:15 pm

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 ... +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
Last edited by Dandygal76 on Wed Apr 20, 2016 7:38 am, edited 2 times in total.

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: Dealing with Mum's diagnosis...

Postby sheena » Tue Apr 19, 2016 10:17 pm

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
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Dealing with Mum's diagnosis...

Postby Dandygal76 » Tue Apr 19, 2016 10:35 pm

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
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Dealing with Mum's diagnosis...

Postby Proud Wife » Tue Apr 19, 2016 11:48 pm

Hi CLM,

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

CurlyLittleMiss
Posts: 23
Joined: Fri Apr 01, 2016 12:25 am

Re: Dealing with Mum's diagnosis...

Postby CurlyLittleMiss » Wed Apr 20, 2016 10:22 pm

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
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Dealing with Mum's diagnosis...

Postby Dandygal76 » Wed Apr 20, 2016 10:49 pm

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
Posts: 23
Joined: Fri Apr 01, 2016 12:25 am

Re: Dealing with Mum's diagnosis...

Postby CurlyLittleMiss » Thu Apr 21, 2016 7:50 pm

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
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Dealing with Mum's diagnosis...

Postby Dandygal76 » Fri Apr 22, 2016 9:29 am

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-c ... tic-cancer

xxx

PCUK Nurse Chris
Posts: 17
Joined: Wed Jan 14, 2015 4:03 pm

Re: Dealing with Mum's diagnosis...

Postby PCUK Nurse Chris » Fri Apr 22, 2016 12:44 pm

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

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Dealing with Mum's diagnosis...

Postby Dandygal76 » Mon Apr 25, 2016 2:09 pm

How is your mum hun? I hope everything is okay. x

CurlyLittleMiss
Posts: 23
Joined: Fri Apr 01, 2016 12:25 am

Re: Dealing with Mum's diagnosis...

Postby CurlyLittleMiss » Thu Apr 28, 2016 7:18 pm

Hi all,

Mum has been extremely up and down this week. The morphine is helping with the pain but the hallucinations are there now instead. She knows she's talkin nonsense so then gets frustrated and keeps apologising which then upsets us because she's upset.

She hasn't had such a great day today, dad ended up taking the day off as she was sick while getting dressed this morning and didn't want to leave as she'd scared herself. She's finding it hard to eat because she's feeling queasy so much, so we sre trying to encourage her to at least keep drinking and hopefully she'll start to be able to face food soon again.

Her boss came to see her yesterday (she was of course on her best behaviour!) and a couple of her brothers came which wore her out but did certainly cheer her up, especially after hearing that a former colleague had passed away from breast cancer at the weekend.

I think for all of us it's just been one of those weeks where everything's just been a bit crap!
CLM x

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Dealing with Mum's diagnosis...

Postby Proud Wife » Thu Apr 28, 2016 8:54 pm

CLM. Snap, know that feeling in terms of one of those weeks!

I am really sorry to hear that your mum's been up and down. As everyone says, it's such a physical and emotional rollercoaster. You are doing amazing but please don't forget to take care of yourself too.

Lots of love
PW xxx

CurlyLittleMiss
Posts: 23
Joined: Fri Apr 01, 2016 12:25 am

Re: Dealing with Mum's diagnosis...

Postby CurlyLittleMiss » Mon May 02, 2016 2:07 pm

We've been told now that mum has moved on to the next stage. Even though we'd already come to that conclusion, to hear it from someone in a professional capacity was still hard to take in.

Mum is in bed most of the day and takes her a long time to do anything, which she finds frustrating. Dad said it took nearly an hour to get her ready for and in to bed last night. She also thinks he's lying to her which upsets him. He knows she doesn't mean it, but it is still hard to take. I can't imagine what it must be like to watch the woman you've loved for 40 years fade away in front of you like this, it's hard enough dealing with it myself.

It's just so frustrating knowing there's nothing I can do. Sadly at times like this, it's when you see who your real friends are. The vast majority of mine are falling over themselves to help me and my family, while with others, I wonder sometimes if I've even told them. I know some people find it difficult to talk about and I don't want mum's illness to be the only topic of conversation, but I'm starting to see those who are there for me and those who are just there for themselves. I had a text (more of an essay!) from a friend yesterday who had been through something very similar with her dad last year. She just has a way of knowing what is going on in my head and putting it into words that make so much sense and don't leave me feeling guilty.

Tomorrow the hospice nurse and social worker/counsellor are coming to see mum and dad. There was some discussion today when the nurse phoned about getting dad some extra help with carers etc. He's very proud and told me he took his wedding vows seriously and intends to look after mum as much as he can. I can understand that point of view, but I also need him to look after himself too. I did threaten to move back home for a bit and soon said he'd consider the extra help available!
CLM x

Fifi

Re: Dealing with Mum's diagnosis...

Postby Fifi » Mon May 02, 2016 2:30 pm

Hi CLM,

Sorry to read about your Mum. It is nice to read just how much your Dad loves her though, which makes it all the more sad. I hope he does accept some extra help, even if it is just bits round the house. He sounds a very proud man though, so I can understand his thinking.

As wit regards to your friends. You really do know who they are at times like this, sadly it doesn't always tend to be the ones you expect to care. When my Dad was diagnosed, and since he has passed away, my mother has been absolutely terrible towards me. She has been the most unsupportive person I could possibly imagine. I also had 2 colleagues at a previous job who I thought I was close to. One of them wanted me to paint her nails just after I poured my heart out to her, the other just told me she didn't want to hear it.

I know these kind of people can make you angry and bitter, but they aren't worth bothering about. All that matters right now is your Mum. I really feel for you and I wish I could take it all away.

We are all your genuine caring friends here.

Leila xx