Monday September 27th - spread to liver!

4 minute read time.

I had prepared myself for the scan results showing the cancer was back so when I met up with Christine it didn't come as shock when she told me it was in mums liver.  Nothing in her brain and her chest is still looking good.  She asked me if I'd prefer mum not to know unless she asked and I thought about it before asking if Dr Mehta was likely to offer treatment.  Christine told me second line chemo could be a possibility but that it would depend on whether mum was strong enough.  She said this could be done intravenously or with tablets at home and that the tablets might be kinder.  My mind was in a tizz and I said I just don't want mum to suffer.  I don't want her to have treatment if it'll only prolong her life for a few weeks and the quality of life during that time is poor because of the side effects of the treatment.  I left it that she would speak to Dr Mehta and let me know what he says before he speaks to mum.

I came home and immediately looked up liver secondaries.  It appears to say that if the primary cancer responded well to chemo then it's more than likely the secondaries in the liver will also respond well.  I text Christine and have told her that if there are treatment options Dr Mehta must tell mum and let her decide what to do.  One minute I'm hoping he will offer chemo and mum will take it and the next I'm not so sure.  I feel numb to be honest.  I am going to text Christine again in the morning and ask her to let me know what Dr Mehta says before he sees mum.  Christine says it will be about teatime when he gets to mum because he has clinic.

Things are still not good in the hospital.  This afternoon during visiting mum needed the loo.  Christine was with us and I told mum to press her buzzer.  After 15 minutes no one had come.  I asked mum if she was desperate and mum said yes so Christine helped me to get mum into her wheelchair and I took her to the loo.  I didn't get her there a second too soon.  I brought her back from the loo and Christine helped me to get mum back onto the bedside chair.  About 10 minutes later a nurse came in and asked mum if she wanted something.  I had forgotten she had pressed the buzzer.  I told the nurse it was ok she had needed the loo but I had taken her as she was desperate and couldn't wait any longer.  She reset the buzzer and walked away without saying a word.

I actually spoke to Christine alone after visiting and that was when she gave me the scan results.  We had a good chat and she told me that she knew I was busy with other things at the moment but that I should put in a letter of complaint at the earliest opportunity.  We had a good chat and she told me why she had come off the wards and was now doing this job.  She said she used to love working on the ward and was a ward manager.  They then introduced the new modern matron and she was encouraged to go for the post.  She got the job and hated it.  She spent her time doing admin and responding to complaints. She said what made it even worse was that the complaints were generally well founded.  She said she joined nursing to help people and she feels that the job she is doing now allows her to make a little bit of a difference for her patients.  I told her she had made more than a little bit of a difference where mum and I are concerned.  If I hadn't had Christine to help I dread to think what might have happened to mum.  Especially with the cock up with the meds when mum was admitted.

Christine has sent the referral off to the hospice and says I won't believe how well mum will come on if we can get her in there for a couple of weeks before she comes home.  She says the care there is fantastic.  I've spoken to mum about it today and, although she wasn't keen at first, telling her I could come and go all day and even stay over with her did the trick.  Oh and the fact that she wouldn't have to wait until 2.30pm for a cig, what can you do!?!

Carol the lady I met at the hospice on Thursday rung me on Friday morning and again this morning to see how things were.  How nice is that!  She has a day off tomorrow because she works part time and says she will ring me on Wednesday morning and I know that she will.  People like Christine and Carol restore my faith in humanity.

Finally, my aunt and uncle are heading back to Scotland tomorrow as they look after their grand daughter whilst her mum and dad are at work.  They have been such a support over the last week and I know I'm going to miss them terribly.  Just hope I'm strong enough to cope on my own.

Anonymous
  • FormerMember
    FormerMember

    Hello,

         I joined this site in May 2010 , My Mam has Lung cancer and secondry liver .

     I'm so pleased you've found such wonderful people . We havent been so lucky .Our  specialist nurses are very hard to get in touch with,when you do eventually get in touch ,you feel as if your  being a hindrance.

     I  also scoured the internet for information and help , this site has been a godsend.

     Keep well xx

  • FormerMember
    FormerMember

    Caroline,

    So sorry to hear of the ongoing saga of poor care regarding your Mum in hospital. Ihave pm'd you on that.

    When asking about the secondaries in the liver, it is important to know if they are in ALL sections of the liver, or only one or two.

    My Mum had them, but, as they'd left her 5 months after completing her chemo, before doing another CT scan, the tumours had spread to every section of her liver,  making it inoperable and therefore terminal. She may not have been strong enough for more surgery, but that was not an option at that time. She did go on to have more chemo and the tumours reduced in size dramatically and she flourished through several more cycles of chemo.

    I'll not go into detail here, but there did come a time when the chemo made her feel worse than the "C" and they had to stop. However, from the initial terminal diagnosis, because of the liver secondaries, until she became ill from the chemo, she had over a year of time where she was able to be fairly active and have as good a quality of life as was possible when she was having chemo. She was 75 then and 76 when the chemo had to be stopped and then she had 5 more months before she died aged 77 years. Her cancer was very aggressive, so I'm hoping that by telling you this, it may help in some way - even though your Mum's and my Mum's cancers were different. None of this is easy Caroline and then you have the added problems with the lack of care by the hospital for your poor Mum too.

    Take care. I'm here if you think I can be of any use at all and please contact me if that's the case. I am sure Carol WILL phone you on Wednesday. I found the hospice staff to be caring and nothing was too much trouble for them. Although we were unable to get Mum into the hospice (lack of available beds at the time) we did have the "Hospice at home" and they were Brilliant, as were the Alexandra,Marie Curie and MacMillan nurses. God Bless you both. Love, Rose x x x

  • FormerMember
    FormerMember

    hi caroline....

    is your mum in a specialist cancer hospital.....they seem good to me...or a normal hospital that deals with everything..

    i found the difference amazing and never will i go in a jack of all trades hospital..

    hospices can be brilliant at getting patients back on there feet....dec 2008 i was so shattered i couldnt even get to the kitching fron the front room and i was losing weight, couldnt cook or clean or do anything...

    the specialists decided i needed to go in the local hospital.....

    but been the bolshy git i am when i was told this i refused to go in.....id have rather have stayed home and starved to death....if i went in the local hospital here id most likelly get a nasty bug and never get out..

    an hour or so later my mac nurse came round and asked if i wanted to go into the hospice...

    id spoke to a couple of people on here in the past who had told me how good hospices can be and i knew that hospice didnt mean end of life in loads of cases..

    2 weeks in a hospice including christmas day and , well here i am now....st catherines in scarborough is briliant....your own room, your own tv...bed...fancy automatic chair...a fancy big bubbling bath...and fantastic nurses who are there as soon as needed, when needed...no filthy bugs .none of the crap we can get in some of the hospitals...

    i am sure your mum would get far better treatment in the hospice...everythings so much better in those places...i even had my lap top in with me...

    i still wont ever go in the local hospital....BUT the seperate chemo dept here is really brilliant....just not going on a ward ...

    im lucky though as any treatment i go to the hospital nr hull a new / newish cancer dept....at castle hill...its ok there..if ok is the word for being in a hospital..

    i hope things will improve for your mum....i would have gone nuts when that nurse finally came into see your mum...ignoring the buzzer just isnt on is it....

    the bit about telling your mum about things...well you know your mum the best so just go with what you think is best for your mum..

    some of us patients like to know every detail.....[ not me ]

    and some of us dont like to know to much..

    allways go with your instinct as i say you know better then the docs or the specialists what your mum is like....

    and dont forget...some of the stuff we can come across when we google things isnt allways spot on....

    i never google anything to do with chemo stuff..chemicals...side effects...anything to do with hospital stuff or treatments due....what i know cant worry me....

    hopefully everything will allways go as good as possible for your mum.....

    not allways i know....but sometimes.....just when we think things wont improve they do....

    and dont forget...put your feet up at times...relax ...go out and treat yourself....when you do your mum will be pleased as well....

    for patients life is not allways about cancer as the advert says.....and it shouldnt be for carers either...

    all the best to you and your mum and your family members

    hugs  xx

  • FormerMember
    FormerMember

    ps...a totaly different thing.

    would you credit it...after hernia op i have been sleeping on settee.......

    tonight i just had a little lay down on bed while corrie was on....o yes i watch corrie now....arghhh

    anyway i fell asleep on bed and argghhhhhh turned over and fell off straight on to tummy......

    lol   lol

    o yes it hurt  like mad but it was still funny in away...

    :-)

    xx

  • FormerMember
    FormerMember

    thinking of you and your mum..

    sending ((((HUGS))))) to you both!!!!

    lotsa love

    emz

    xxxx