My mum had a stroke now terminal cancer

I’m 27 years old. My mum recently turned 60. On the 29th April she had a stroke while walking home and developed global aphasia. She has been in hospital ever since. Initially she was on the acute stroke ward, then moved to rehab a week later where she lost her appetite and developed jaundice, then the respiratory ward to drain off 4.5 litres of fluid from her lungs. She had an MRI and they found a tumour blocking her bile duct. On 13th May my dad, mum and I were told by three doctors that she had terminal cancer of her liver or bile duct and was likely to be on palliative care and they’d get her home ASAP and put us in touch with the hospice team. The same day, a gastro-intestinal doctor told me they weren’t sure she even has cancer and we were told prematurely. As you can imagine, a very horrific and traumatic rollercoaster of a day. She was moved back to the acute stroke ward. She hasn’t eaten anything for over two weeks and has been sick every day. She has had two failed ECRPs so no confirmation of cancer and almost went for a PTC which was decided against when the doctor realised we hadn’t been informed of the risks. Communication throughout has been excruciatingly bad which has sent our stress levels sky high. Was told today that there is a 40% chance she won’t live past 30 days if she has the PTC because the presumed bile duct cancer is so aggressive. If she survives it the PTC will extend her life 3-4 months. If she doesn’t have it, her jaundice will continue and the bile will create an infection. I’m finding it very difficult to cope with the shock of the news that I will lose my mum soon. Her inability to speak properly and lack of comprehension makes the whole situation so much worse. I’ve moved out of London to Exeter to care for her and am trying to work my job remotely while looking after my 80 year old dad. I feel under immense strain/stress and feel exhausted, can’t sleep well, have been experiencing a tight chest, shortness of breath and heart palpitations and don’t know how to cope. I feel tearful all the time. Have been on Sertraline 50mg anti-depressants since November (so before all this happened) for anxiety/depression. Most of my friends live in London so I’m struggling with not having face-to-face support most of the time.

  • Hello, sorry to hear about what a harrowing time you’ve had over the last month. It must all feel quite surreal. I’m wondering - do you have any siblings or other family members for additional support? 

    Im in a similar situation (though am little older than you, in my thirties) My mum was diagnosed with pancreatic cancer three weeks ago. It was a total & absolute shock. I’ve also moved out of London (where my friends/work was) - back to my home in Yorkshire to look after her. 

    I can relate to the palpitations and have also been on Sertraline for a while prior to this. 

    Are you in contact with the local Macmillan team? They can provide advice & support to relatives as well as patients. Perhaps an initial meeting / counselling appointment might help you manage the day-to-day. I’m arranging one for myself tomorrow, as I’m an only child and struggling to know where to turn.

    Also, I have found that talking to sympathetic friends on the phone helps somewhat. 

    For now, try not to predict what will happen with your mum’s condition, as - as you say, it’s a rollercoaster and you haven’t got enough reliable information yet.

    I haven’t found any magic solutions yet. Just facing each day as best as possible.  

    Wishing you all the best; Keep in touch if you’d like xxxx J

     

     

     

  • Am so sorry to hear about your mum 

    I went trough a similar story with my dad 

    he had strokes and recovered great to be told he had cancer non hodgekins lymphoma received treatment etc and good news it gone into remission followed by bad news they found a different cancer tumour located in the bowel this was removed surgically and again all clear after five long years off scans every six months he was giving the all clear January 2018 and discharged from clinic as it had been five full years with no change around may 2018 we noticed he had started being very paranoid and saying random things we just assumed it was his medication as they was very strong some of them and they had been doubled in dose due to pain he got one morning he woke up and said he had a funny pain in his stomach and went to A and E and was kept in for a long 3 months of seeing my dad crying trying to attack us going for mum having to be restrained by secuirty acusing my mum off all kinds calling my sisters all kinds this wasn’t my dad he was the nicest man you could meet and so over protective off my two younger sisters and my mum he was in a side ward on his own weeks we asked what was wrong  they kept telling us he had an infection and there trying to locate it and had him on antibiotics there was still no change eventually after saying we was going to pals and constant at them they brought a doctor down from the 7th floor it was a doctor we had seen before the cancer doctor he told us my dad had cancer and if it’s the first cancer it’s very aggressive and it’s pushing on his kidneys because it has spread this stopped him going the toilet and kidneys was failing after 3 gos they eventually got tubes in to drain his kidneys and everything went normal again he was better then ever no confusion no nothing during the 3 months we had been told different things and different things and. Y dad was told different to us still in hospital in the October his younger brother was found dead in bed no warning nothing he was 57 my dad had started his chemo and was doing great the cancer had responded to it and what not just before Xmas he was allowed home and has missed 2 session of chemo as he had diarrhoea and was told not to come in as it was very severe my mum rang me at 3 am my had fell and couldn’t get up we did it know what to do or who to call in the end I phoned his own doctor and he referred us to a team to help with his care he has a hospital bed brought to the house and he was no longer aloud to use the stairs anyway he went and got his December treatment and New Year’s Day a nure visit and doctor told us his blood cell count was very bad and low the. We was told a week later it was ok I noticed a change in him he looked very sick I rang him Ambulance this was January this year after being kept in we found out he had septics and pneumonia after this being treated his cancer doctor told us the could not carry on with his chemo as it wasn’t responding and he was too sick he’s immune system is too low a s8mole cold could kill him and he was last a lot longer living with the cancer and it was terminal and couldn’t e surgical removed I have never ever seen some one waste away in front of me so quick he passed away due to lymphoma on the 8 of April 2019 age 59 he was buried on the 23rd of April 2019 his 60th birthday  I feel like some times these doctors don’t know what there talking about we was told so many times he would live longer and he was ok the he wasn’t honest he lasted 2 full weeks on the driver before he passed away I’ve never herd any one lasting so long I still feel he wasn’t ready to die and it just all happened so fast hardest thing I’ve ever been trough and still is I can’t stop thinking about him every day  I will say a prayer for you and your family xx 

  • I have just been through something similar. My mum was taken in on 2nd October for a stroke. Late next day they found she had cancer of the pancreas and spread to liver.  They did say they would do some chemo when she recovered from her stroke which she was doing really well until they said she has an infection thinking chest. Took them 5 days to say no it's not on her chest it's a uti then following day they said her kidneys weren't working properly, so put her on iv fludids to help, consultant said last Friday she wasn't strong enough for any cancer treatment. The hospital then took her off the drip to dehydrate again. We were told weeks on Friday, Monday got a phone call she had deteriorated over night so now it's days rather than weeks she then passed away in her sleep early hrs of Tuesday morning. Everything has happened to fast. 

  • Louloub I'm sorry about your Mum. My Dad was diagnosed with stage 4 cancer recently.  Just getting to grips with that and he has suffered a mild stroke which will delay any palliative treatment.  Because of covid we can't visit and are finding that we are not involved or updated about his condition by staff. We are at a complete loss at the moment.  

  • Sorry to hear about your dad. It was a year on Thursday since we lost my mum. I understand what your going through, but must be 10 times worse due to covid. We were saying on Thursday we were glad everyone could visit during the just under 3 weeks she was in hospital. Most days sh had visits in the morning and afternoon. 
    I am here if you want to chat. What type of cancer if you don't mind me asking?

  • He has pancreatic cancer. Because of very recent diagnosis we haven't had a Macmillan referral yet and this has been delayed more by the stroke. We know that Hospital staff are under pressure but we are out of our minds with worry about dad. We feel like he has been abandoned 

  • Sounds exactly the same as my mum. She had pancreatic cancer and they couldn't start treatment straight away due to the stroke. The 10 days leading up the GPs kept saying she had a chest infection when infact it was blood clots on her lungs.

  • Hi louloub

    Please ask to speak to a pallative care nurse, a dietician, a GI nurse. And push for something to be done. Pancreatic cancer is not something you wait on. Not trying to scare you hopefully I havent. You and your family are your dads advocate you will need to poss be a bit forcefull without beibg rude. Ask when is his treatment starting what are you doing for pain. As you cannot sit by whilst this gets worse.

    You need to keep his weight up there are supplements the dietician can get. 

     

  • They cant start treatment because of the stroke. It is literally impossible to speak to anybody nobody answers the ward phone or ang extensions.  We

     feel totally helpless

  • Hello Lulabob

    I'm sorry to hear about your Dad's situation. Can I suggest that you contact the hospital PALS office. Their role is to offer confidential advice, support and information on health-related matters and they provide a point of contact for patients, their families and their carers.

    I'm sure they will be able to support you in getting some answers about your Dad's care. 

    Best wishes, 
    Jenn
    Cancer Chat moderator