My world just fell apart ( My Mam) Died 3rd Dec

[PCUK Nurse Jeni]

Hi Francis,

Yes, there are some long term side effects (increased susceptibility to infection, muscle weakness, especially in large muscles ie: thighs, raised blood glucose levels, mood changes, erosion of the stomach lining, thinning of the skin, or bruising under the skin). However, you have a valid point in saying that this is a terminal condition. Maybe ask again the next time you go? It may be that if you see a different doctor, they will prescribe them? If they were helpful, then it is worth asking again. Short courses should be fine. Some places will keep a person on them fairly long term, unless they start experiencing major side effects, like not being able to get out of a chair due to muscle weakness. In some instances, a person stays on a very low dose daily for much longer.

Hope it works out ok,

Jeni.

[NICOLA]

My mum has been on 2 steriods per day for a number of weeks, they took her off them and she went down hill so the Mcmillan nurse told her to start taking them again, this was 2 weeks ago, the GP came to see her on Wed and upped them 2 4per day !! She is suffering from muscle weakness but I thought this was due to weight loss ???? I think I will be asking the GP about it when he comes out next week. I think muscle weakness is better than feeling ill as my mum did.

Nicola

[Ella50]

Hi Francis,

Take care and stay strong,

Thinking of you..

Love Ella xx

[francis]

Hello all, I see there are a few new members on here which pains me to see. I now read posts and know exactly what people are talking about.

My mam had oncology appointment yesterday for the results of her scan 3 weeks ago (oncologist was on holiday) It's good news, the cancer had responded well to chemo it has shrunk on her pancreas and liver mets have gone down considerably. They also said that the cells in her lymph nodes are showing clear or good signs, I can't remember which and I didn't even know there was anything in the lymph nodes. They also said something about her bones but I did't really want to know if it has gone in to her bones so I didn't ask and neither did she. Oncologist said that she wanted to give her a rest from chemo as she is very weak and spends most of her day sitting down. How can all signs show the cancer is responding but she is deteriorating??? She is very weak but insists on doing everything for herself. She has trouble getting out of a chair and is very unsteady on her feet. She sleeps most of the time when I'm not there but manages to stay awake most of the time I am there. She seems to be quite shaky but still insists on on giving her own injection for blood clotting. She is eating more. She's been off the steroids for almost 3 weeks and is taking a low dose anti depressant which also helps with appetite. Her leg is still swollen either from the blood clot or the cancer, her other ankle stated to swell a couple of days ago and her hand is up and down from last week. Her speech is slurred like she's on drugs and she's getting muddled and indecisive. When people ask me how she is I really don't know what to say. My dad is finding it hard, I think he thinks she is being awkward. He has no clue of how to look after her really just doing the basics. We went to sainsbury's yesterday and she was in and out of the wheelchair as if to say I don't really need this chair. I thought she was going to go down any minute. She is still in no pain so I am really thankful for that. I know from reading all the different experiences on here it could be a lot worse. I hate myself for saying this but I wish she would go now before or just in case it gets worse. I hate myself even more for thinking of getting back to a normal life when she's gone. I don't seem to get upset anymore really, ive become detached. I hope she knows I care, I can't bring myself to say all the things I want to say to her because I don't want her to lose hope. I know she's not getting better and she knows she wont but I know she's not ready to go yet, she's a bloody fighter and will fight with every last breath she has.

[DRAD3]

Hi Francis

Don't be too hard on yourself. The thoughts you are having that are causing you so much guilt are completely normal in this situation - I had the same thoughts myself and the guilt. I wanted to say so much to my husband but was scared for the same reason you give. I felt I was betraying him by accepting the reality of the situation. He was a fighter too and did not want to talk about the end or accept it. He was like this until his death and it was very difficult but I had to respect his wishes and just hope that he knew all the things that went unsaid. Some things may not need to be said, they are just known between loved ones. Just be there for her, especially now she can get a bit muddled as I think that must be a bit scary. I hope you have some time to take care of yourself and that you have some support. Love and strength.

Deb

x

[laura]

hello francis, am pleased that you had some good news re scan, i exspect mums tiredness has spmething to do with the chemo, i know it knocked brian for six, in that respect, in spite of no chemo for 10 months, he still suffers lethargy, but then still has cancer.

i also understand your thoughts, this b****y disease plays with all our heads, doesnt it?

we no longer understand ourselves sometimes, or why we think certain things, again b****Y cancer.

take care of you, enjoy your time with mum. love laura xxx

[rachelqt]

Hi Francis,

Just a quick message to say im thinking of you. It really is just so hard with all these emotions. Just feel like im in the same place as you.

Takecare, Rachel xx

[PCUK Nurse Dianne]

Hallo Francis,

Sorry to hear this is a difficult time for you all and as with your 'forum friends' our thoughts are with you. As other 'forum friends' have suggested please do not be hard on yourself. Everyone copes with such difficult emotional times in different ways and it is human nature to try to protect those we love most, often this is by not saying what we really would like to say.

I am sure the combination of chemotherapy, stopping the steroids and possibly the anti-depressant have made your mother tired and weak. She is perhaps also trying to resolute things in her own mind. I can see she is a fighter by wanting to stand and be out of the wheelchair as much as possible, I am sure this is both her pride and determination. Sometimes we just have to be in allowance of this, as hard as that can be.

The fact that your mother does not have pain currently is good, as pain relief and comfort are important, and you may find that her being a bit muddled and indecisive may be related to her pain relief.

Maybe your father is trying to cope 'in his own way' and sometimes we are not aware of how that is perceived by others; but for him he is 'grieving' the lady he married and this may be the only way he knows how to cope with it.

We hope by sharing your feelings with others and the support and messages from them helps. We are also available if you wish to talk to someone or email the support line if we can be of assistance (support@pancreaticcancer.org.uk).

Best wishes,

Dianne

[francis]

Thank you so much for your replies. I don't know what I would have done without this site to fall back on. I spoke to her this morning and she told me she is feeling achy and she may need her MST upping as she finding it harder to stand. It must be bad because she's told me. She's also starting to feel sick again but says that it's the METROCLOPRAMIDE (spelling) making her feel sick. I was wondering if the stent may have moved but I have made my feelings so known about the refusal to stent her in the beginning that I think the oncologist don't like me. I did ask if they could look at the stent again but have come up against this brick wall again! I can't see what the the problem, why do they want to try different meds first when all they have to do is scan her??! By the time they try more drugs she could be dead! I thought the whole point of palliative care was to make the patient as comfortable as possible... She hasn't got time or energy to rule out which drug is going to work!! I am so angry, I feel very strongly about the procedure they follow!

Well I didn't intend to rant on here but Ive just read yorkpauls post about his partner being left a considerable time before doing anything about her sickness, its not a difficult or invasive procedure it fact the severity of my mothers sickness was far far worse!!

[DRAD3]

Dear Francis - you rant away my love - that's what we are here for! So sorry to hear how frustrated you are. Do NOT worry about whether the oncologist likes or dislikes you - that is irrelevant. It is your right to be kept informed and your mum's right to receive good quality care. Be assertive and ask for the reasoning behind any decisions they are making (ask PALS at the hospital to help you if you don't feel happy with doing it alone) - I am sure, once you feel they are doing everything in their power to make your mum's quality of life the best it can be in the circumstances, you will happier. We continue to think of you and hope that things improve for your mum.

Love

Deb

x

[NICOLA]

Thinking of you Francis stay strong ad just take one day at a time, give your mum lots of hugs. What I would give to give my mam one last cuddle x

[francis]

Thank you for your kind replies. Even though I don't post much I look at how everyone else is doing, I don't post because writing makes me reflect on my own situation and living and breathing this awful cruel disease day by day is more than I can cope with sometimes. But reading your posts helps me to cope at my own pace.

Things have progressed over the last 2 weeks. Her lip and chin has gone numb. She describes this as the feeling you get when you have been to the dentist and have had an injection. I looked it up on the internet and it's called numb mouth syndrome. It's caused by the cancer metathesizing in to lymph nodes ect. The palliative care team said they hadn't heard of it but one looked it up and said it sounded about right. Theres nothing to be done for it except maybe radio therapy or uping steriods?? She wants them to scan to see what it is but I think if there is nothing to be done why give her more bad news and put her through the the trauma of going for scans ect. She is getting muddled up with lots of things now too, she said she saw a pink cat yesterday, I'm glad it was a nice thought. Pain has been getting worse but she don't say anything about it. She is weak but still manages her own self care. I am worried that she still battles with the stairs, refuses to have a bed downstairs. I don't think she will be able to do this much longer. I have so much adoration for my mother but I wish she would just stop putting herself through so much. I hope I have inherited her courage and determination.

[DRAD3]

Hi Francis - so lovely to hear from you and to know that reading other people's posts have helped. I know how difficult it is to post when you are in the midst of it - I didn't do much myself for the same reason and totally understand. It is just so nice to know that this is here though, whenever you need it, don't you think? Your mum sounds absolutely amazing and so typical of everyone we hear about battling this dreadful disease - inspirational courage and determination. It sounds as if you are both doing brilliantly and you have a great amount of love and respect for her, helping her make her own choices which will help her feel some sense of control - I am sure she will come to agree with you about managing the stairs. Do take care - will continue to think of you and your mum and send lots of strength and love.

Deb

x

[francis]

My mam died on 3rd Dec 12.32am - I'm relieved that she is not suffering any more but will miss her terribly. I stayed with her the last week and things seemed to happen fast but slow if you know what i mean?

No one should suffer like that. I hope and pray that they find a cure for this dreadful illness soon! Lots need to be learned with regards to treatment for terminally ill. It's shocking that once youve been diagnosed as terminally ill your basically left to fight tooth and nail for everything. Funny how they say that the aim is to keep you as comfortable as possible and then you have to wait ridiculous time scales for every last comfort!

Have to wait till De 18th for funeral my children 15 and 16 want to put up the christmas decorations even though I want to my heart isn't in it. I want more than anything to live life especially seeing my mother dieing over this last 8 months. She lost so much weight I don't know how she kept going.

I would like to have a charity box for pancreatic cancer at the funeral, does anyone know how i can get one? I would also like to thank everyone on here for their support I really dont know what I would have done without it. Even though I dont always post reading other stories has given me strength. I wish you all strength to cherish every moment. xxxxxxx

[PCUK Nurse Jeni]

Dear Francis,

We are so very sorry to hear about the death of your mum.

Please accept the condolences of the charity at this sad time. Our thoughts are with you and your family.

If you email robert@pancreaticcancer.org.uk, he will assist you with regard to the collection box.

Kind regards,

Jeni.

[laura]

francis, so sorry to read of your mums passing, as you say, no more suffering, one very strong, brave, lady, am sure there will be lots of your mum in you, and your children will cherish you.

get thru christmas as best you can.

thinking of you, love laura xxx

[jenna]

Dear Francis l posted once to you a while back but have just noticed your post re mum's passing. Please know we here at the forum are thinking of you and send our cyber support. You are probably right about the posting bit as it churns up all sorts of felling when reading others stories and only you know what you can cope with right now. Bye for now J

[yorkypaul]

Dear Francis. I am so sorry that you have lost your dear mum. Please accept my condolences and be assured that you are in my thoughts and prayers. Hugs,

Paul