Palliative care nurse visit for my dad.. scared.

Hi again,

 Tomorrow we have the palliative care nurse visiting for the first time. I wondered if they are beneficial with helping appetite and fatigue aswell as symptom control for treatment? I dont know what to expect, I'm scared there wont be any hope with this visit. My dad had advanced bowel cancer stage 4 as well as recovering from covid, pulmonary embolism and weight and muscle loss. It's like a rollercoaster of being between hope and despair with his illness regarding good days and bad days. 

Desperate to help and dad and not ready to give up. 

Advice and what to expect would be greatly appreciated.

Thank you xx

  • Hi 

    How are you getting on ? How is your dad doing with his recovery from covid ? Gaining any further strength .

    You might like to phone the helpline staff and they will let you know the actually role of a Macmillan nurse as they have close links . I think they would help with all that you have mentioned but I understand what you are saying . We place our hope so much on the team . I can’t remember did we talk about a dietitian being contacted ? 

    That might be an option to get the maximum calorie input without being over burdensome.

    Is his oncologist staying in contact ?

    Take care 

    court 

    PS helpline 0808 808 000

  • Hi court,

    Thanks for your reply. 

    Finding it tough still, one moment il feel strong and then the next be in bits. It's a rollercoaster of emotions between hope and despair. Iv had moments of panic at times. It's just so hard, feels surreal and you never expect this to happen.

    We had a bad wk last wk with dad, sleeping a lot and in bed reduced appetite. We had to reschedule his oncology appt for next wk where we are having a second opinion. But my dad has picked up again since friday so hoping that continues. He has been eating better again and been downstairs. Managing to shower with little help from my mum but mostly managing himself. I think he still has long term effects of covid but it is hard to tell as there are so many similiar characteristics to cancer.

    I'm wanting to ask pallitive nurse how to get liver and lung surgeon specialist involved to. We got the gp to supply juice energy drinks to help dad which he has been managing. We just need him to walk more but it's hard to as we dont want to make him do something unless he is up to it. 

    We haven't had the oncologist contact. We only saw an ocologist once and we and my dad seeing a different oncologist for second opinion next wk hopefully if he up to it. We have only had the colorectal specialist nurses contact couple times to see how my dad is doing. Not had any district nurse out yet, they said they would be out last week and never turned up which annoyed me. Only ever had auxiliary district nurse out couple time to take bloods. My dad been home since week before xmas and feel we have not had much support at all. Me and my sister are both nurses but neither specialised in oncology. 

    Il see how today goes. I have a lot of questions and hoping it is a beneficial visit and can take something positive from it for my dad. 

    Thank you for your help, 

    Cracker123

  • Hi 

    Gosh you have been left with the heavy end of trying to pull this all together .

    I am just so sad to see the normal support structures stripped away from families and patients .

    I hope the District Nurse has turned up by now . A phone call takes two seconds to do and keeps the family informed . I find that very difficult too . 

    I hope you all get a bit more clarity from the second opinion . People still need access to services and support despite the virus . We all know it has to take a different form but it needs to be there for all involved.

    Although it’s good you both have your clinical skills to draw from it’s still your dad and the pain is not lessened of the situation . You still need support and help through this .

    We are here to listen and support you .

    Court 

  • Hi court

    The pallitive nurse was really great and we all felt a sense of relief knowing she is there for us as support or to call anytime. 

    No district nurse still, I am definitely going to chase that up today. Not impressed but hopefully just a blip. Alot of pressures in the NHS right now. 

    We had my dad second opinion with different oncologist yesterday. I had prepared pages of info and questions which helped influence the doc to have my dad have repeat bloods and a ct scan then re review in 4wks for potential treatment. I put the doc on the spot few times where I didnt feel I got sufficient answer so i am going to phone bowel cancer uk this wk to advise. The doc did not really answer me about having a liver and lung specialist involved as part of my dads MDT which I think is important to have. When I asked about radiofrequency ablation for liver and lung he said that would be for patient who had their bowel tumour removed first and cause my dads is so advanced that would not be possible. I did say I'd read a lot of forums on here which wasnt the case and he said you cant always rely upon forums. 

    I also asked what mutation my dad had which is KRAS mutation. Do you know anything about this regarding treatment? 

    The doc said target therapy drugs weren't available on NHS so I'm going ask bowel cancer uk advice about that to.

    We were given some paper work about the two chemo drugs dad would have- first being 5FU and then FOLFOX via pic line or port implant. But he said we will wait n see scan. So all up in the air but happy we are having progress. Bloods came back all good and dads HB had gone to 99 from 91 originally at 83. So there no need for blood transfusion they said. 

    The doc said chemo can cause risks of heart attack, stroke, bleed, and other things that's really scary. But if read they are rare effects. I just dont get why we feel they'd just give up on my dad and we gota fight to get somewhere. 

    Hope you and your mum are safe and well. Thanks again,

    Cracker123 

  • Hi 

    My email alerts are not working and I have only just noticed your reply.  I am so sorry about that . They have the technical team working on it but it seems a mystery !

    That sounds quite a productive second opinion . The whole approach to stage 4 treatment does seem more bound by individual clinical judgements at time and that’s where it gets tricky . But that purely my opinion . 

    My mum only ever used the chemo mentioned for your dad . Biological agents were only emerging back then but to be very honest my mum felt two was quite enough for her system . I think we all felt a third was too much for her so we did not pursue it privately, It worked for her . The Kras mutation aspect I will try and get you some information on . 
    My mum started with chemo first which I think is a good plan as it let the visible spread be tackled and reign in any additional micro disease .

    I think the only one that has any impact for kras mutation is Avastin . But some oncologist don’t like it as it has a risk of causing bleeding . Also it’s not funded on the NHS but you will see discussions particularly on the Bowel cancer U.K. site where people use it . 

    So glad the palliative care nurse was helpful . So need that support right now and a bit of direction and as you say the district nurse situation may have been more of a blip ! Difficult times for sure and I think a lot of district nurses are picking up additional work just now . 

    Sorry once again ,

    Court 

  • https://www.nice.org.uk/guidance/gid-dt14/documents/kras-mutation-testing-of-tumours-in-adults-with-metastatic-colorectal-cancer-final-scope2

    Here is the Nice guidelines for Kras mutation with a metastatic spread . With your background you might find some aspects helpful . 
    Court 

  • Most explanations focus on the biology but this explanation from Vickeylynne a while back explains it well . That’s your reading for the day sorted  

    Send your day our best wishes .

    Court 

  • Hi court,

    That's ok, no need to apologise.

    I'm really grateful for your help and all this information you have sent. I managed to read which made some things bit more clearer. Although some of the info went over the top of my head. 

    How did your mum and yourself cope with the chemo side effects? Were they manageable? I'm really scared for ct scan and if treatment will happen. And also scared of treatment. 

    With my dad its one step forward n two steps back. He was in a lot of pain with his left shoulder blade yesterday which there is a lump on his back that's been there for some wks. Having the doc come out to see today. He is so anxious about every symptom. He also had tummy pains coming in waves yesterday and so fixated on it. Is this a normal symptom? It breaks my heart seeing him go through so much. I think he is still having long term covid effects to. When his tummy is causing discomfort he doesnt eat as much either and the weight is hard to get back on. We have the build up drinks but I think we need something more. Will ask doc about dietician if my dad agrees. 

    Iv been Intouch with bowel cancer uk nurse and just awaiting a reply. 

    The oncologist said it's not curable. It's so disheartening to hear nothing hopeful and having to fight and push for things. It's just so horrible. I pray and I hope but sometimes just feel defeated. 

    Thanks again for your support, it really helps hearing your experience and advice. Thank you,

    Best wishes to you and your mum to,

    Cracker123 

  • Hi 

    How did your dads visit with the GP go ? Hope he got some reassurance. 
    My mum had quite a rough time with chemo but they were all there to help her . What turned out to be best for her was actually a reduction in the dose . It found her own tolerance level her body could handle and it did a good job .

    They are very experienced in dealing with the side effects . They also gave my mum a slow infusion over six hours to reduce the side effects .

    There is so much anxiety surrounding a cancer diagnosis but it is amazing how you can get into a routine with treatment and develop some skills in managing it . That I am totally confident you will manage.

    I hated hearing my mum was not curable . It ate me up inside that she had missed her opportunity for surgery. But then I slowly got round to thinking about it more as a chronic condition , reducing the tumour burden and focusing on her wellbeing. That helped a bit ,

    Hope today was ok  

    Take care ,

    Court