Another 'Mum' falls victim

My mum was diagnosed early October 2011 and it has been a hell of a rollercoaster ride since then, going from being inoperable to a possibility they could operate before eventually deciding it's definitely inoperable. It has taken 8 weeks to confirm this and in that time she seems to have gone downhill very quickly experiencing all the symptoms i read other's loved ones going through, jaundice, sickness, loss of appetite, weightloss etc. On top of all this She has asthma and has just been discharged from hospital after suffering a bad chest infection. While she was in there the consultant told us she is too ill for chemotherapy.

So what now?

I'm scared of asking questions because i don't want to hear the answers. I dont talk to anyone about it and i don't know what to tell my children when they ask how grandma is. No one else in our family is as weak as i am, they all seem to be able to face up to things so why can't i ?

Hi Mistipop

You are not weak at all, this is a lot to take in so dont' beat yourself up. Your Mum needs you to be courageous right now and fight her corner for her. From what I have learnt about PC and what I learnt supporting my Dad through this, PC is as unique as the person it affects. There are lots of us on here that have been where you are now, dont give up, there are going to be set backs, unexpected hospital visits etc It is very uncertain time. I am a Project Manager at work and I approached it just like a project, lots of lists, questions, a plan of action that was re-written many times - and whilst my Dad called me bossy boots, I know he loved the fact that we were organised and always went in prepared.

So forgive me for bossing you around now but I mean well, you need to get yourself a list, write down questions, things you are worried about - anything and take them with you to the next appointment. Chances are they will cover all your questions for you but there will be some that they dont and remember there is no such thing as a stupi question. I asked everything from what can he eat to, was there any herbal remedies that would help - loads of stuff.

The consultant said your Mum isnt well enough for Chemo , so when will she be, what does she need to achieve before chemo can start. When will they do blood tests prior to startinig chemo. In the mean time can she meet with a palliative care doctor? Be assertive with the care givers dont get brushed aside you need to feel supported.

Jeni is also a great help on here plus everyone else that is going through this like you. I have had so much support, love and learnt so much from people that replied to my messages because we have all been there. If you are in touch with your community Macmillan team, they are also a great help and get you nutrional advice, physio session.

So I will look forward to hearing how you got on with your 'list' very soon. Don't give up, you have much to do and I feel sure you can do it!

Lots of love

Helen

Hi Mistipop,

Im sorry about your mum. The waiting around for answers is a nightmare at times. In your situation it must be hard to be given and answer only for the consultant to change it, im sure you wanted to scream!! I understand how your feel about asking questions but I have learnt with my dad who was diagnosed in Sept 11, that knowing answers gives you direction. I too was frightened about asking questions and felt as if I was banging my head against a brick wall and going around in circles with 'What If'.

I agree with Helen it is a good idea to have a list of questions you want answered. This advice was given to me and has really helped. Also this forum is a great place to get advice if your worried about anything. There is usually someone on here to help or offer comfort.

Hopefully if your mum builds up some strength after her infection they may consider her for chemo? Its worth asking.

Take Care..Rachel xx

Hi Mistipop,

So sorry to hear about your mum. You mentioned several symptoms your mum is suffering from - jaundice, sickness, loss of appetite, weight loss. With her recent hospital admission, were any of the above addressed, or did they just concentrate on her respiratory side of things?

There are several issues here. The jaundice will need to be sorted out by having a stent inserted, if she has not already had one. This is something which needs addressing with the hospital team. Does your mum have a nurse specialist? If so, you can contact her.

Sickness and nausea can be well controlled by giving her the right type of anti-sickness tablets. There are several available. Is she already taking some? If not, the GP can prescribe them for her. Loss of appetite is very common with this cancer. Eating small meals often is the key, or healthy snacks. She can also have nutritional supplement drinks, which are a substitute for meals, but can also be taken on top of small meals. These are available on prescription. It would be good for your mum to be seen by a specialist dietician who can help her to find ways of adding extra calories to her meals. You can ask about this the next time she has an outpatient appointment. They may be able to get the dietician to see her there and then.

If she still struggles, she may have some dexamethasone - which are steroids. These are also good for nausea, but will help to make your mum feel hungry. She may also need some pancreatic enzyme replacement capsules which will help with the weight loss. When there is a problem in the pancreas, it can affect it's ability to produce enzymes. These enzymes are necessary for the digestion of food, so the body can absorb the nutrition from what is eaten. if these are insufficient, then the person will continue to lose weight, have abdominal bloating, and can have pale, fatty or oily stools, which are difficult to flush. if your mum has any of these symptoms, then she will need enzymes, such as CREON.

I hope this helps? If you need more help, please contact us at the support line, either by phone or email.

Kind regards,

Jeni.

Hi Mistipop

You're not weak at all. It just goes to show how stongly you feel for your Mum. We all find it tremendously difficult but we cope - sometimes it's a struggle but we don't really have any other alternative!

As and when you are ready to ask questions, do, but don't push yourself too quickly. For me, knowing more helps but not everyone is the same way. My hubby (who is the one with the disease) doesn't want to know really and blocks it all out. If that's what helps him to cope then that's fine with me.

The most important thing is the one that you are already doing! Love your Mum and show her how much you care. The practicalities are important but not as important as that.

Please keep us updated as to how Mum is doing.

Nicki

Heh Mistipop

Please stop beating yourself up. You are not weak, you have taken a very strong step in trying to find answers, nothing weak in that hunny.

I am truly sorry to hear that you mum is poorly. This disease takes hold so quick, that a lot of the time you don't really have time to prepare yourself for the varying turns that take place.

First things first, you need to find out if your mum is not having chemo at the moment because of her bad chest - or for other reasons. If the doctors are waiting for her infection to clear, which is a probability, because the chemo is so strong and takes all the immunity, you are open to infections far more easily than healthy people.

My mum is ill, I don't know if you have read any of my posts, but my earlier ones are very similar to yours. Mum was eventually diagnosed in August after about 2 months of ifs/buts and maybes. She was very poorly in August and had to wait for her infection to clear before any chemo could be started.

Amyway, if you are unsure about anything, please please ask questions on here, there will always be someone either gone or going through a similar situation. I have had some fantastic advice, and made some lovely cyber friends, and when your situation is feels so bleak, it is really comforting to know that there are people who understand.

Take care, Louie xxx

Hi everyone and thanks to all who replied to my post, it helps knowing i'm not alone in this c*** cancer world. Louie i had read all your posts and could relate to them so much, it's what prompted me to write my own. It's comforting to know other people are going through the same. Is it wrong to feel that way?

My mum is on a cocktail of drugs...anti-sickness, painkillers, steroids, constipation relief, anti-depressants etc, sometimes i think they're all fighting each other! I've not heard of the pancreatic enzyme replacement tablets though, maybe it's something i should ask about.

I went to the doctors Thurs because i'm not coping very well at all. The not knowing anything is slowly driving me mad. The doctor has signed me off work and said i need to make this christmas with my mum a very special one. I went home and plucked up the courage to ring my mum's macmillan nurse, she explained that my mum was way to ill for treatment while she had the chest infection and doesn't know whether she will ever be fit enough because of all her other symptoms. I asked whether she had come home to die, she said sadly this will be her last christmas and their job is to make her as comfortable and pain free as possible. (cry cry cry)

My mum lives alone, I want to be with her all the time but i am a single parent and my situation makes that impossible.

x

Hi

I'm so sorry that you're having such a tough time. My thoughts and prayers go out to your Mum, you and the little one.

Nicki

hi misti, sorry your having such a difficult time, xmas makes things so much worse i think, havent you got anyone else to support you, even emotionally? everyone on here will try to help/support you, anytime. just do what you think is right for you and mum and your little one and it will be right.

love and thoughts are with you laura xx

Hi Laura, I have a sister who lives close by and she's as involved in my mum's care as i am. I don't really talk to anyone about it because......well i don't know really, i'm quite a private person and in certain situations i tend to push people away and deal with things on my own. This seems to be one of those situations. Not good i know x