Things are looking bleak

[Seavccg]

Hi all, I haven’t been on this site for a while as I took some time out to reflect and come to terms with the situation. My sister was discharged from hospital in August following her bowel perforation. She went to stay with a good friend in the hope of recuperating and gaining some strength. The fistula which occurred following the emergency surgery has not healed and her small bowel had a lot of diffuse cancer deposits. Unfortunately the cancer has progressed and she is now terminal. She is unable to keep food down, vomiting shortly after attempting to eat anything sometimes four or five times a day as her bowel is now frozen and unable to process food. As a consequence she has lost a lot of weight and her energy levels are almost non existent which means she has no real quality of life. I feel desperately sad for her and wishing things could change. She has spent a few nights in Hospice but even with a syringe driver her sickness could not be controlled and after 5 nights she opted to return home. We are now looking at options around end of life care, however this is proving difficult as she does not want to know how long she may have and is firmly of the belief that if she can get the sickness under control she will be able to recover and have more time. It is very hard for us to manage her expectations and reality with what we know and can actually see. Her consultant told me “weeks to months” a few weeks ago and things have deteriorated a lot in the last three weeks alone. It is now just a matter of time.

[January-2016-UK]

Hello, I can remember when you first came on line and the number of problems your sister as had. How is your sister mentally? Apart from being unable to eat properly and have low energy levels, is she able to enjoy some things such as reading, radio or tv etc? If so, I can understand to a degree that she doesn't want to know how long she may have. It is very difficult for you and doubtless your sister is quite frightened by all that has happened in a relatively short space of time.

Is there anyone else you can consult regarding getting the sickness under control? Why not speak to the Ovacome nurse on this site on Monday and see what she suggests. You probably need some help as well.

All the best!

[Seavccg in reply to January-2016-UK]

Hi, she is able to watch tv etc a d her mind is as sharp as a razor. She talks of buying a new car and taking ill health retirement and drawing down her workplace pension, she longs to go shopping and take trips out to the pub etc. Each time she manages to get ready (with help) to go out, she runs out of energy before making it through the door. She has had anti sickness meds prescribed by a palliative care consultant, I doubt there is much more a CNS can offer as it is the shut down of her bowel that is making her vomit and the Consultant said if the sickness was abated she "may be able to eat small amounts for pleasure" but not for nourishment and substance as the food cannot be absorbed. In essence she is being starved by the effects of the cancer and it is heartbreaking to witness.

[Seavccg in reply to Seavccg]

Yes it has been quick as she was only diagnosed in Feb.

[January-2016-UK in reply to Seavccg]

I think it might be an idea to encourage her to dream, about the new car and trips to the pub, etc. We all need dreams. As ChristineL says from the experience with her own sister, perhaps on one level your sister does know that these things are not going to happen but she's still hoping they can.

I'd look into Tesla's suggestion about the stoma although maybe she isn't strong enough to withstand the operation; it's worth asking though. Especially if it works and does give her more time.

It's been a very difficult time for you as well, so take care of yourself too.

[Hidden]

So sorry your sister is unwell, is there any way she is able to tolerate the inspire nutritional drinks or some mash and bovril at all? I would have thought that the Palliative care team should be able to sort the sickness at least for now, It is a very hard time for you, sending you a big hug

[Seavccg in reply to Hidden]

Even Ensure comes back up.

[Hidden]

Oh dear, that is unsettling for both of you, I would have a word with your gp or district nurse or care nurse

[Tesla_7US]

Can she not have a stoma/colostomy? Can you get a second opinion?

[Seavccg in reply to Tesla_7US]

She has a stoma and a gastric fistula. The stoma does not work because the fistula is ahead of it in the bowel track so everything comes out of the fistula. As she cannot absorb anything all that is coming out is brown liquid at the moment.

[Tesla_7US in reply to Seavccg]

Seavccg, I am saddened and dismayed this fistula cannot be repaired. It would seem a relief to talk to your sister about the reality of this situation. Denying the "elephant in the room" will not make it go away. Not being able to talk about what's happening adds another layer to this tragedy. People can talk about the end coming nearer without having to shut down and stop living. "Ending the fight" does not mean "ending your life". It signifies acceptance. Acknowledging the fact that one's days are numbered does not mean that you stop living. EVERYONE's days are numbered, they just don't have to think about it. You have all my empathy.

[ChristineL]

Hello, I don't usually write on here but your experience mirrors mine 3 years ago when my dear sister was declining due to OC. It is heartbreaking to see and even now there are days when I can't believe that happened to her. She was 51 and had been as strong as an ox, never got a cold even, but couldn't get rid of the OC. We had been very close. However I just want to say you're more of a comfort and help to her than you know. like your sister my sister didn't want to know timescales though the doctor had told me she only had days. I think if she doesn't want to know timescales that's ok, your sister is still the person she ever was and she's here now so that's the important thing. I know everyone is different but I think it could make it more excruciating to know how much time you have left. At least she didn't have to worry about us, especially when it takes so much energy just to feel well. I think part of my sister knew this was it, I think people must know that at a certain level, but also they have the fighting spirit still because it's part of who they are. A top arrived in the post after my sister died, she'd ordered it online and it made me feel really sad, did she ever think she would wear it, but I remember reading Nigel Havers say after his wife died of OC that a pair of cowboy boots arrived in the post that she'd ordered and he thought that was great, showed her personality etc so it shows how people view things differently. But I really feel for you. You become so much closer to people you love when they're poorly too. Just surround her with love which I'm sure you're doing anyway. Hopefully the professionals can guide you in what sort of conversations to have. But it really sounds to me like you're a great sister and I'm sure she's so grateful to have you. You're there for her when she needs you more than ever. You will get through this although I know this is an awful time. But your sister is still the same vital, strong person that she ever was, OC can't take away that. Take care. God bless.

[Sisafighter]

I'm a sister/caregiver. My sister is on a clinical trial of Keytruda and Listeria. We find out tomorrow if it is working. Her disease is metastatic and chemo is no longer effective. I know I will walk this same walk soon. She is incredibly strong so she keeps others strong in th face of her prognosis. I am in continual awe of all the fighters on this site!

[Lily-Anne]

Positive thinking extends our life. I’m sure I will still be trying to make plans too when I get nearer the time. It’s a scary place to be but when you are the one who is suffering to have mental distraction keeps hope alive. Enjoy today with your sister

LA xx

[chrissapam]

I agree with so much of what Christine L says....it does not help any of us to think we will not die eventually of something...it might even for some of us be something else...When I was being sick constantly on initial diagnosis, I eventually got put on Levopromazine ...am not sure of the spelling... and it was only later I realised it was also used for end of life care. It certainly helped me when nothing else was working and I have got it filed away in my head for the future. It's known colloquially as Levo. Message me if you struggle with researching it ...you sound such a lovely sister...Chris xxxx

[Caroles1]

Hi Love,

You sound like a lovely person and I'm sure you need help and support and hope you are getting it.

It is very sad and disturbing when people can't keep food down,that was me 3 years ago,but not to your sisters extent.

Personally,I would want people around me to keep me in the bubble of "what I can still do/buy/ambitions I can still achieve" since no one who is ill or reaching the end of their life needs to be told it's not happening.

Go along with it all, since it will keep her happy,which is why I think you need support too,since I sometimes think it is worse for the supporters and family.

I just want to wish you all the best and lots of love,you are a lovely sister,

Carole xx

[Wigan2]

A friend that I met through this site was in a very similar position and managed for about 4 months, she was fed a liquid feed through I think a pic or port can’t quite remember. Also had pain relieve she was at home for at least 3 months and coped well. And went to hospice for the last w weeks. I’m not saying it was easy but her friends and family all helped. Sx

[Kryssy]

This is such a sad post but at the same time it reveals that when it comes to the end of our lives we are all different. I am not religious at all but I am not afraid to die. I will just go to sleep but my loved ones will suffer the pain. That hurts me so much but I also know that they will recover and in time will remember me with love and happiness and not sadness. A dear friend of mine died a few years ago after a 5 year battle with cancer and she had the same attitude as I did. We talked for hours and hours of our lives together and what we meant to each other and her ending was peaceful and calm. If your sister is unable to do this then that's fine and that is what she wants but it is important for you to tell her everything that she means to you. It's not a final goodbye type of conversation but it's important for you not to regret telling her how much you love her and sharing memories with her. When you lose her it will be too late to tell her and it is important for you to be at peace too.

I send you my best wishes that you can and your sister can embrace this precious time together and when you have to let her go that it will be with dignity, peace and above all love.

Kryssy xxx

[Sunfleury-UK]

So sorry to hear all you and your dear sister are facing... I wonder if youve had a look at what support there is for you at the hospice? My dear auntie died last year and she and her family had an amazing range of support after her diagnosis to live well (as she wished) and later during her last few days but also this has been ongoing in different ways for her children and husband. It may be really helpful... very best wishes Sx

[Mrs_Atko]

I’m so sorry to read your post. I can’t offer much by means of advice only to keep on your unconditional love and support of your lovely sister and humour her ideas and dreams. They will be feeding her more than you know. You are all in my thoughts and prayers. Jemima xx