Struggling with the reality of what is yet to come

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Good evening all, I hope this finds you all comfortable this evening. 

Firstly want to start off by saying I send you all well wishes and wish I could give everyone going through a hard time a big hug right now, I know although are circumstances may be different what we are all going through or have gone through are similar situations, cancer really doesn't discriminate does it. 

I felt the need to post on here, as I am very unsure myself and not sure what to do right now.

6 weeks ago tomorrow, my auntie started going yellow, and I was very sure of the fact if we didn't do something right there and then I would be calling her doctor on the monday - I think this prompted her to get in touch with 111 thinking it was something minor she wanted to put my mind at ease. Sure enough she was admitted to hospital, with an initial diagnosis of gallstones. My auntie is incredibly strong and to be quite honest a stubborn individual, she is very selfless and I know she would not have stayed in the hospital unless she really wasn't feeling well. Sure enough about 5 days passed, she had completely stopped eating, was drinking small amounts and felt nauseous and sick - she also suffers from vertigo which caused her to be very faint - by the end of her first week in hospital she wasn't unable to stand or get out of bed. Her second week of hospital it was decided they would do an MRCP to double check gallstones, this is when they discovered a 'blockage' in her bile ducts. It was at this time they also decided it would be sensible to fit a stent, as this is what was caused the yellowing of her skin, when they told us this plan of action it was also advised they would be taking scrapings from the area of blockage to do a biopsy. Still on the 2nd week of her stay in hospital, she was becoming more anxious, the doctor and a specialist nurse then advised to us they believe it was not gallstones, and in fact was either inflammation or cancer, it was a shock but from that moment on my auntie seemed to believe it was cancer, she said her body didn't feel like hers any more, as if it just felt like she was living a body that was not her. It was like she just heard it and accepted it, honestly she is such an incredibly strong woman. She also said it would be okay whatever happened as if it meant her life ending, she would be back with her husband. As soon as I heard the words cancer, it genuinely broke my heart. My uncle (aunties husband) also passed from cancer 7 years prior and the realisation that we were potentially facing the same situation just overwhelmed me. Sure enough a few days later my auntie was sedated and one stent was fitted on one side of her biliary duct, a drain was also fitted the other side as they were unable to successfully fit a second. Then we waited, it felt like the longest 3 weeks waiting for biopsy results. And during this time her health declined further, she had become totally dependant, only able to drink from sippy cups, I would (and still do) clean her face and hands every day when I visit, quite honestly I think that has been the hardest part of this for her, she has always been so independent and it was taken from her unexpectedly so quick.

Then came last Friday, 11the November, after almost 5 weeks in hospital the nurse called me and asked me to come in as the doctor had the results. 

The doctor was waiting for me, outside my aunties bay and i knew right then what he was about to tell me. "Hello, I am sorry to tell you this is cancer. Would you like me to speak to yourself first, or would you like to hear the full details of this with your auntie" I decided to wait to be with my auntie to hear any further information, he said to sit with her for 5 minutes on my own just the 2 of us and said if I felt it was right to tell her this on her own before they came to speak to us properly that was up to me. I decided against saying anything before the doctor did as I knew I would be too upset, and felt this was best coming from a professional. 

They then told us : a kaltskin tumour. I had never heard of this in my life? They asked my auntie if she had any questions, and she simply asked them to look after me, she really is a selfless woman. They advised to her that this was at a stage where they felt the best plan of action would be to make sure she is as comfortable as possible, they felt hospice would be best suited for her and my auntie agreed, saying the doctors were wise and knew what would be the right thing to do. 

Fast forward to this Wednesday and she was taken in hospice. She is becoming incredibly sleepy, although she has said she doesn't have any pain which I am so glad of. I just cannot believe how relentless and ruthless this disease is. I can honestly say my heart is breaking right now. I am really doing my best to be strong, and although it has felt like a long 6 weeks, how fast it has all happened has made it difficult to process. I'm struggling a lot right now, I am doing my best to be as strong as possible, whilst also trying to balance work life and general life on top of this although I have had to call in sick last 2 days as I just feel the need to be with her all the time. I feel I have such a responsibility on my shoulders to do everything that my auntie wants, and I just do not want to let her down, I feel incredibly anxious when I am not with her and I know I will never get a minute back right now. 

I don't know if this is me so much looking for answers or advice, this is me just kind of venting. I know it is important for me to not bury my head in the sand, but I know I need to be strong for her right now and I can worry about my feelings later on. 

I think another thing that makes this so difficult is the fact that of course all family is important  but generally I feel like when I've told people my auntie is unwell, it isn't the same as saying mum or dad, people don't know and don't see the relationship we have had the past 20 years, this woman is my world, she raised me and has made me who I am today, in a strange way she is my soul mate. We have done everything together, and been through so much together. We have been eachothers shoulder to cry on through anything and everything, and I just can't imagine being in this world without her. 

I am so sorry to whoever is reading this as I know it is a lot. But I just hope whoever is struggling, either physically/ mentally going through this illness or struggling whilst being there to support someone going through it I hope you are able to express how you are feeling, if I wasn't right now I don't even know what I would be doing. Please if you need to express yourself do so here if it is of help, we are all human and we are all equal, this awful disease does not discriminate and I am glad we have these forums to talk / vent our feelings. Again sending all my best to anyone reading this. Take great care xx

  • Hi

    Thank you for sharing your story, you so sum up a significant function of our community and I did not find your story long at all. You are so right that people do not always recognize wider family.

    I always know when my wife is really ill when she actually wants to go to the hospital and it is never long before she has wanted to get back out again. I am sure though that you will go on after this carrying her memory in your heart.

    <<hugs>>

    Steve

    Community Champion Badge

  • No Katie, not too long a read. I'm keeping a good thought in my heart for you and your Auntie, and I know people sometimes don't realise how close you can be to relatives who are not your parents or children, and how much it is hurting you. 

    I can't give you any advice that you don't probably already know yourself. Spend as much time as you can (and she wants) with her and if she is strong enough, remind her of all the things that she has done for you. And that she is loved (as you said she is one of those people who always thinks of others). 

    But the people on here reading this know how you feel because they are in the middle of the same thing, and it is true that sharing something does make it less of a burden.

  • Thank you so much for your words and for hearing my feelings, I certainly will carry my auntie with me wherever I go when her time comes. She has started getting pain over the weekend, I am so nervous of what is to come but it is a great help knowing I can express myself through this community. I hope your having a nice Sunday, take care :)

  • Thank you so much for the thoughtful words, it really helps during this time. Wishing you and yours a nice relaxing Sunday, take care :)

  • Hi Katie,

      I feel I know exactly what you are going through. My wife was diagnosed with endometrial cancer in February. We were told at the time that she would need a hysterectomy and that should be it. After the hysterectomy it was found it had spread to lymph nodes and would require more surgery to remove them. It took a few weeks for her to be fit enough for the second surgery but in the meantime she started to get severe pain at the top of her leg/ pelvis area. She was told that this was probably nerve damage from the first opp. 

     She had the second opp to remove lymph nodes and during this opp they discovered 2 more tumour's in the area she'd been getting pain. She opp she was having was too big to take the tumour's as well so they just had to leave them.

     My wife is a nurse so she knew what this meant and explained to me. When we went for results of scan we knew what the oncologist was going to say but even so until he tells you it's incurable there's a tiny part of your brain that thinks he might not.

     My wife finished her first palliative chemo in September and at the minute life is quite normal, for how long we don't know.

     I just wanted to say I share your feeling of being scared about what is to come. But we all fing the strenght to get through it.

     sending hugs x

  • Thanks so much for reaching out, sending hugs right back and hope that your wife is managing her symptoms and is as comfortable as possible right now. It sounds like your a great support to your wife and I'm sure your making this time as good as it possibly can be, I'm glad you were able to speak about what your going through too, it is so hard not knowing when things might change, my auntie has started morphine this morning which scares me, but in a sense brings comfort knowing that her pain is being managed. Just about to head back up to see her now, take great care and all the very best to you and your family, Katie xx 

  • Hi this is so my situation at the moment my mum was dignoised 18 months ago in that time we nearly lost her 3 times but the strong independent women she is she fought thru and has been stable for nearly a yr but the last few months she has got worse and now she is weak and her body cannot do what she wants it 2 do so she is frustrated and when i tell her she needs things she doesnt want it 2 help her so i feel angry and sad and so many emotions i do not even know how 2 express she wants 2 die at home so i did everything i could 2 make sure that is the case but some days i feel like i am saying all the wrong things and making things worse but always remember u can do this for ur auntie and take it one day at a time