clarem
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Dear Mlayton,
I am sorry that you have had to find this board but want to welcome you to it. I love your attitude and the fight and determination that you and Lisa have.
There will certainly be others along soon that can help with treatments, resections and chemo. The knowledge and wisdom on here is quite amazing and you have come to the best place for answers and support.
Sorry Moonpie for the spelling error in your name and my grammar in the last post. I don’t like replying on the ipad as I make more mistakes.
Hi Moompie,
That is very frustrating to say the least. Personally, I would contact the secretary again tomorrow for an update. I would also asking the doctor that made the referral to follow it up so that there are no more delays down to missing referrals.
Dear Pam,
How are you? I am touched that you take the time to support me when you are going through unimaginable grief – you are remarkable.
My sister’s stone is up which is quicker than we thought it would be. The spray of flowers that mum had done for my sister’s wedding anniversary last week still looked lovely and I’m glad I got to see it. Mum is a great flower arranger. My Dad came with me and put the rose that him and mum take to my sister every week. They visit her several times a week but always take a single red rose to her on a Saturday. I left gerberas – my daughter loved watering all the flowers and helping to tidy up her special place. I have a feeling that Nik’s little bit of the cemetery is going to adorned with niks and naks that the kids take up to her.
Dear Curlwurly35,
This must be incredibly hard for you and your family. I strongly suspect that your mum knows she is not going to get better.
What support are you all getting? Have Macmillan nurses or Marie Curie been involved or mentioned? How involved is your Mum’s GP? Are district nurses coming in? You should not be having to manage the emotion and end of life decisions on your own without professional help. It is mentioned a lot on the forum that we don’t have expiry dates stamped on the bottom of our feet and whilst it’s not an exact science, I do believe that professionals (such as Macmillan or Marie Curie) do have an indication as to how long an individual might have.
Even if your mum does not want any involvement from Macmillan or hospice, they can still support and help you and the rest of the family. Your Mums GP or consultant should be able to get this done immediately for you
I forced my sisters GP and consultant to take my sister back to hospital and tell her prognosis. It was just not something I felt I could do on my own. Nobody had officially told me a timescale but her decline was rapid and she needed to know that chemotherapy was no longer an option. We all thought she didn’t ‘know’ but my sister eyeballed her consultant and asked him how long she had. He told her 2 months at best and she died 2 weeks later. Those 2 weeks allowed her to do the things she wanted and needed to do and despite us thinking she didn’t know the true picture, in reality she did. I’m not trying to be blunt- what I’m trying to say is if you go with your gut and if you feel she is declining quickly then do what you can now for her. Put your energies into what you can control now for her.
You have been doing everything for her that you possibly can – please don’t doubt your actions and decisions. Use your energies to continue to do the best for her and spend time with her.
.
I quite agree Moonpie. In reality you shouldn’t need to but sometimes the system is not what it should be and it is necessary to be on top of it.
Hi Nancy,
Welcome to the forum but I am sorry at your Dad’s news and that you have had to come here. You will get so much support and advice for your Dad and you. Someone, often many, alway stops by to help.
Dear Pam,
I have known you for such a short time but I think about you and your family every day, wondering how you all are. It’s of no consolation – it doesn’t alter anything but you, like your daughter are up there for me in the bravery stakes. It is so clear why Lauren had all those amazing attributes – she got them from somewhere and from what I’ve seen, you too have strength, determination and hope in abundance.
You have done what no parent should have to do Pam. Be proud of all you gave her as a mum and all you selflessly did for Lauren.
X
Hi curlywurly35,
I am so sorry to read about your mums deterioration. I understand how hard it is to comprehend after watching my sisters rapid decline with this disease.
I would focus on what needs to be done now to ensure the best care for your mum making the time she has as comfortable, pain free and full of her wishes as possible. The palliative team should be able to address all of this with you.
In relation to questioning what has or has not been done, as a relative you did what the medical profession recommended. Whilst being a great advocate for your mum you cannot expect to be an expert on such a complex disease so please do not doubt your own actions. Everything you have done has been out of love and with the best of intentions for your mum. That being said, there may well be questions and issues that you need to put to the professionals to answer the doubts that you have.
Time is precious. Take care of yourself too and please let us know how your mum and you are.
Hi Alexandra,
Take and accept all the support and help you can. Just knowing I had the help and support of others, even if I didn’t use it, carried me through some of those most difficult times.
I live 300 miles away from my family and found that incredibly hard during my sisters illness especially having to manage the medical side of things. It just makes a very crappy situation even more challenging on so many levels.
Your parents must be incredibly proud of you.
Dear Tyler,
I am sorry to read about your sister in laws deterioration. It must be incredibly hard for your family.
Hospice care will ensure she is truly comfortable. Treasure every minute.
Hi Moonpie,
You might know but if not, the reason our poo is the brown colour it is is because of bile being excreted into our intestines. Take the bile away and the stools become the light colour that you mention. There are other things that affect the colour of poo but with your mums history, I wouldn’t be ignoring it either.
