clarem
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Dear Kirsty,
I am so very sorry that you lost your mum. There is so much support and understanding here that might offer you some comfort.
Kindest thoughts,
Clare
Hi Joelh77,
I’m in the UK and still very new to this but learning fast thanks to everyone here. It’s awful that you’ve had to find this site but there is so much support that I am glad you stumbled upon it.
My 41 year old sister was very unexpectedly diagnosed in October 2012. She’s had internal stenting, an external drain and portal vein embolisation in November to grow her liver for a resection. The resection went ahead in December but was halted a few hours in as the tumour was to extensive to remove. The plan then was for Chemotherapy but since December 27th infection has been the biggest complication and it’s delaying chemo. My sister was admitted with Septic Shock in January, has an abscess on her liver that they are still trying to treat and an external drain from the abscess. She’s home now on oral antibiotics and it’s one day at a time at the moment.
It can seem like 1 step forward 2 back and I can completely relate to the devastation of being told the resection is now not possible. Nothing has gone to plan for my sister. If you have any doubts please ask for a second opinion. A good team of doctors will understand why you are asking for one. Once chemotherapy goes ahead, would surgery possibly become an option again? Marion has mentioned the AMMF site which is very good and has resources of UK experts on this cancer. The Marsden may already be one but if not then there are other doctors and centres available.
Tap in to all the support and advice here – I am amazed and indebted at the support I have received from strangers (although they don’t feel like that any more).
Thank you Willow. To be honest we are no further forward than we were a month ago but at least she is home which she needed to be, even if it is just for a few days.
Hi Zanderini,
I just wanted to say that don’t feel bad because you can’t be there all the time. You are a good granddaughter and your grandmother will know that. I live 300 miles from my family as much as I want to be with my sister nursing her and supporting my parents, I have to be realistic. You do what you can, when you can and utilise all the support you have.
I travelled back yesterday after 4 days with my family and it was very hard leaving them but as someone told me yesterday, if I fall, I can’t pick them up. You have to look after yourself too which is easier said than done. Please keep coming back to the forum as there is so much support.
Thank you Anna.
My sister got home on Thursday. Her consultant felt that she needed to go home so she is on oral antibiotics and anti-fungal capsules. She still has a drain from the abscess and chemo just cannot go ahead at the moment. To be honest she is weak, frail, dozes for most of the day, her appetite is diminishing again and pain seems to be creeping up. She is unable to look after her 3 year old daughter and a family member is with her all the time.
It is very difficult to get the abscess to heal as it is on the side of the liver that was ‘shut down’ for the portal vein embolization. That part of her liver would have been removed had the liver resection not been halted.
Hi Jim,
I’m sorry that you’ve had to find the site but there is so much support and advice you have come to,the right place.
I am also in the UK and My 41 yearbold sister was diagnosed very unexpectedly in October. Surgery on December 17th to remove most of her liver was unsuccessful but she is working towards getting chemo. You are so right about being treated in a regional centre. Logistically it can be stressful but in terms of care and specialisms there is no comparison and essential in my book.
Keep in touch,
Best wishes.
Hi Honeez1,
You are not rambling. You have come to the best place as you will get so much support and advice here. I like you am very new to this as it was only 3 months ago my sister was diagnosed with cancer in the bile duct. There is so much information to take in, on top of the fact that you are dealing with cancer. To add to all the tests and diagnosing of the cancer your dad has also been ill with infection which complicates everything.
Someone wiser than me will be along very soon but my advice at the moment would be that now your dad is over the infection, sit down with his doctor and find out what the plan of attack is. Discuss all the options and see what is available and go from there. Ask everything that is your head and if you feel you need further opinions ask for it. You will find your own way of how to be around your Dad – it’s amazing the strength that you can draw upon.
Hi tammy, like you I am new to all this after my sister was diagnosed in October with a Klatskins tumour that is inoperable. She’s waiting for chemo but not well enough yet. There is so much support on here – you’ve come to the right place. As a family we are taking it one day at a time and discovering that we all have very different roles to play in supporting my sister and her young family.
Good luck at the second clinic – I’ve got everything crossed for your dad.
Good evening all from a very cold Scotland. Thank you again for all your support, well wishes and knowledge. My sister eventually got the abscess drained today and I’m setting off tomorrow morning for the hospital to spend three days with her. I’m hoping she’ll be a whole lot better than when I saw her 10 days ago.
Thank you Marion, Lainy, Pam and Willow for all your support. I got a message to her consultant this morning and things have moved forward for the better. She got transferred this evening to the hospital where her surgery was done and where her Hepatic surgeon is based.
The blood cultures show she has an ecoli infection and the CT that was done today shows a collection of fluid under the liver. Not sure what the fluid collection is yet but the plan is to drain the collection tomorrow. I will hopefully get to speak to her consultant again tomorrow – he is such a lovely man and he completely took on board all my concerns when he rang me today. She is still very ill but I feel better just knowing that she has been transferred. Her clotting must be a bit out of whack as mum said they gave her vitamin K just before the ambulance arrived to transfer her.
Hi Orlysud,
I am so sorry for the circumstance under which you have had to find this forum. I am new here too and like you am very grateful to have stumbled upon it. I just know there will be a wealth of support and wisdom along to help you here very soon.
Dear Bob and Nancy,
I just wanted to stop by and send you some support. There are no words that I can say to make this time easier. Five days ago my sister was taken to surgery for a resection which was halted as her cancer is too advanced than could have been known.
Jeff clearly is very loved.
