overwhelmed..

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I don't have a question but I feel I need to write something in the hope it may unclutter my brain from the rollercoaster which started in August 2020.  During lockdown v1 I was dropping food supplies to my dad [74] and his wife [64] weekly but of course not going inside the house given they were both shielding so I didn't physically see them other than through the window occasionally.  I got a text one day from my dads wife to say that he wasn't eating properly and hadn't been for a few months now and had lost 3 stone but that he had specifically asked that she didn't tell me as didn't want to worry me.  I wasn't sure what to do with that information at the time but thankfully she followed that text up with another message saying she had told my dad that if he didn't phone the Dr first thing Monday morning that she would tell me everything.  That spurred him to arrange an appointment of course! He went to the Dr, she took some bloods and said he would need an endoscopy for further investigation.  At this point he had to call me because they don't drive and would need me to take them to the hospital.  We attended the endoscopy in early September and the news wasn't good, a mass was blocking the entrance to the stomach from the food pipe hence why he hadn't been able to keep anything down as it wasn't reaching his stomach.  My heart sank and I sobbed walking back to the car knowing this wasn't good. When I drove around to pick them up at the entrance of course I felt I couldn't show my sadness so tried to remain positive on the quiet journey home.  Next was a CT scan followed by a meeting with an Oncologist, it was stage 4 oesophageal cancer, I almost felt my world fall apart as they broke the news.  Dad was so weak and poorly by this point that they admitted him from that appointment where he stayed for 4 days while they fitted a stent to enable him to eat to build some strength back.  Covid rules on the ward were strict, one person for a booked one hour slot per day which was difficult.  We met again with the oncologist, I had lots of questions as I need to know things to process them in my head properly.  They offered palliative chemo to extend his life expectancy even though he was weak and frail and the cancer was going nowhere, she felt that with support from myself and his wife he would manage but would keep a close eye on things of course. Chemo started quickly and Dad was a rock star, always had a little bit of banter for the nurses and seemed to be coping with it really well.  With each treatment it seemed to take a little longer to recover and although he isn't losing weight anymore because the stent is doing its job he is getting frailer by the day which again is soul destroying to watch while trying to remain upbeat and on top of everything! He has chemo every 3 weeks which started in October and the oncologist has approved another bout, its being reviewed this week in fact.  Dad is very much of the thought process that if its helping (which it is as all 4 affected lymph nodes reduced in size from the last CT) he'll keep going until they say no more. The oncologist is great, very direct which I like.  Ultimately its a balance I guess.  On top of all the above happening, his wife, who suffers from COPD was diagnosed with lung cancer just before xmas which had already spread to the lymph nodes and the liver, she is now waiting on a palliative radiotherapy session to try and ease the pain in her chest and allow her to breathe a little easier after which they may offer chemo they may not.  Dads wife was made redundant during lockdown1 and has been caring for my dad since his diagnosis but of course she is just as unwell as he is now and as much as I am doing/offering as much support as I can I feel there aren't enough hours in the day to achieve everything.  I myself work full time, I have 3 children at home (2 are adults) luckily juggling and multitasking and being organised are me in a nutshell and I do feel as though I am managing everything, hospital appointments, dr appointments, arranging bloods ahead of chemo, carers, district nurses, OH, applying for benefits, disabled badges, taking cooked meals over to save my dads wife cooking every day, to name just the things that spring to mind.  Anyway, that's all really and I do feel better for just having written it all down - thank you for listening Slight smile

  • WOW!

    You are dealing with so much and I truly understand how difficult and exhausting that must be for you, especially while trying to stay upbeat and positive for your dad and stepmum.  

    Thanks so much for offloading here and sharing your experiences.  I know it's hard but try to give yourself some 'me' time too.  You'll be no good to anyone if you become ill or exhausted yourself by constantly juggling, and it sounds like your dad, stepmum and own family are all relying on you.

    My mum has advanced lung cancer that has spread to her lymph nodes and adrenal glands, she was diagnosed 3 weeks ago so I understand the 'whirlwind' you are in.  My dad is being amazing caring for her but has tasked me with doing all the admin for financial support, blue badge etc.  I am an hours drive away from them and haven't seen them properly since the summer when, between lockdowns, I would go and sit in the garden with them.

    The helplessness to not be able to do more is awful, but at least we know our parents are getting the best care possible.

    It's SO important to talk through your fears and get them in the open though and this is the prefect forum for that.

    Thanks for sharing and wishing you and your family all the best for the challenging times ahead.

    xx

  • thank you for your reply - I am allowing myself some me time by walking when I can at weekends it allows me to clear my head completely and try to think about nothing for an hour which does help a lot.  Sorry to hear about your Mum too, I am thankful they only live a 10minute car journey away and I can be there quickly.  The whole covid situation isnt helping either but thankfully they have now both had their first dose of the vaccine which I am pleased about.  Its strange because with my dad things happened very quickly once diagnosed but with his wife it seems to be taking a long time to get any treatment started - she is taking slow release morphine to try and ease the pain but actual treatment, given her diagnosis was december 22nd isnt happening for another 2 weeks.  I think my biggest fear now is that she may actually lose her battle before my dad and as his main carer what then happens as my dad is very stubborn and wont want to leave the house he's lived in for almost 50 years.  One day at a time though I guess and dont worry about things that are yet to happen even though that is difficult in this circumstance.

    take care yourself and thanks again for replying it means a lot

    xxx

  • Hello Coco37

    I have found writing on this site a great source of release and I hope that you will be able to continue to find that release for your mind here also.

    I have a similar experience though the care aspect of your Journey is very much more involved and I hope you can continue to find the strength, and time for you as you are at present, it is so important as you say to keep in the moment. 

    My husband was diagnosed with stage 4 OC in May 20, he is coping well with chemo, my Dad has recently had radiotherapy for a cancerous ulcer in his stomach, and has been quite unwell, and my brother in law is awaiting treatment for his own diagnosis. He lives in our street with my Mother in Law and it is her that I feel for.. both her boys with this cursed disease. 

    Positivity is the only way we know how to go forwards, I know that this is difficult, some disagree that it is the way to go, but in order to face that which will eventually come to pass, we must know that we have done everything that we can.

    I am pleased to read that you have managed to apply for benefits and a disability badge, this for us has been a great support during these tough times.

    I wish you all the support and strength you need as you continue on this Journey.

    Love and Light

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Thank you for responding Lowe it means a lot, it sounds as though you too have much to deal with and I wish you family all the best at this very difficult time.  We found out yesterday that Dads last chemo treatment will be Monday which I was surprised about as no one had ever told us that there would be a maximum of 6 treatments so that was a big blow but given his diagnosis was 6months ago I do feel blessed to have had this extra time so far and he has handled chemo so well bless him given his age and frailty.  I guess the road ahead will be difficult in the coming weeks but I am remaining as positive as I can be but I do have the odd meltdown, usually when I am on my own in the car and a song comes on that triggers the tears or just my thoughts.  I'm not ready to lose him, he raised me on his own after my mum left when I was very small and although he did remarry twice more we have this bond that I cant explain, I guess he's my hero, the one that has always been there and I just cant imagine him not being in my life anytime soon.  It feels a little selfish saying that but its how I feel.  Take care xx

  • Hi Coco37

    I do not believe that it is selfish to want to keep our hero's with us, it is a right and just thought. I feel the same, I often say, I have had two men stand by me, one through my childhood and into adult life and the other as a Woman, finding her way in the world.. Without these two men, I and my life would have been a very different experience... they are my hero's.

    That said, do you know why they are stopping the chemo? Have they mentioned whether he will have scans or anything to determine how the chemo has worked?

    I am thinking of you all x

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Thank you for your kind words Slight smile

    Because its palliative chemo apparently, the oncologist has said on a number of occasions that her colleagues probably wouldn't have even put dad forward for chemo but that she felt he had a good family support and that would be important and help him through the treatment/recovery periods.  She did say he would have follow-up CT scans and still come in for appointments post CT (most of these are being done as phone calls at the minute) only. 

    Ali

    xx

  • Hi Ali

    Thanks for coming back to me, I asked the chemo question because it's the one thing that I query in my mind when reading many posts, the different treatments, given to different people. I understand everyone is different and with different yet similar diagnosis for OC, tumours are different, secondaries and age all play a part, but six treatments was a surprise to me. 

    I don't know enough about the ins and outs and the guys dealing with your Dad are the professionals, as are those treating my Husband, he has been on palliative care since May, once a fortnight, except for a two week break over Xmas. 

    Maybe there are more decisions to be made once the CT scan has been carried out? 

    We have all our consultations by phone also, for me it is beneficial because Dal would have to go on his own otherwise and I may not get an answer to any of the questions that I have rattling around my head Worried

    I do hope that there is more help out there for your Dad and I wish you both the very best.

    Lowe'  (((Hugs!))

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Thanks Lowe - i think your right, it all depends on where it is, what stage its at, the age of the patient perhaps who knows. Ive been lucky enough to be allowed to attend appointments at the hospital, i have to wait outside the oncology waiting room until they call him in and then a nurse pops to get me so I can sit in with the oncologist and for me thats great because I tend to have lots of questions - strangely the 6 treatments was never mentioned, I was of the thinking that he would keep going until either he couldn't cope with the recovery or the oncologist felt it was time based on his results etc each time he had a CT scan.  I felt a bit sad driving home yesterday, told him I would miss our dad/daughter time even if it was to take him to chemo.  He doesn't tend to get a look in at home, his wife answers questions on his behalf even if I ask him something when she isn't in the room she pops up and answers lol! 

    I took the nurses in a box of chocolates yesterday to thank them for looking after dad Slight smile  Fingers crossed his wifes radiotherapy session goes well today and they arent both too grumpy with one another after the steroids - I think I might need some body armour when I visit just in case!

    have a great day xx

  • Oh Coco!

    I too hope the radiotherapy did go well as you wished. and let's hope together that you will get some more of that Dad/Daughter time

    Chin up!

    Lowe' x

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • I’ve had some similar struggles (financially) with dad so if I can share my experience happy to. Have requested you as a contact. Either way hope you get the support you deserve x