Hi Cazza59, 

Welcome to the forum although I'm really sorry to hear about your Mum's diagnosis. 

It's understandable that you've lots of questions at the moment. This period of "limbo" where answers are unknown about diagnosis and possible management options can be a very difficult time. I hope that the MDT on Thursday will give you some of the answers that you're looking for. 

I wonder if you might find it helpful to speak to one of our team of nurses ahead of Mum's next appointment. Sometimes talking things through can help and may help you come up with a list of specific questions that you want to ask at the appointment. You can call the nurses on 0808 800 4040 Monday to Friday 9am to 5pm. 

Best wishes, 
Jenn
Cancer Chat moderator

Hi Jen,

Thank you so much for your reply. That does sound a good idea for me to have a chat to one of your nurses. I will do so, also I got the number for one of the acute oncology team for our local hospital so will definitely speak to someone medical.

Best regards

Hi Jen,

My Mum's MDT was yesterday but we heard nothing about it on the phone. I did contact the McMillan nurse the day before it  and she said sometimes they phone but it may be a letter. I rang her GP's secretary today but she wasn't able to tell me anything but gave me the consultant's direct line no and I rang today and it said no one was in the office until Monday. So I rang the McMillan line and was told that Mum will get a letter giving her an appointment on 25th July to see the consultant to discuss things. She wasn't able to tell me if they had found the primary tumour, said it was the consultant who would tell us things. She said that if Mum got more poorly then to get the GP out. I know they can't raise or dash your hopes. I am worried that my Mum is getting more and more exhausted. She is washing and dressing herself still unaided but then just spends the day sitting in an armchair or laying on the sofa or bed. I got the GP out on Monday as I thought she seemed breathless on exertion and her feet more swollen; he put her back on her Bendroflumethiazide. The District nurse took bloods as requested by him on Wednesday and she could only get 1 vial of blood not the requested 2. On asking the GP today her calcium was 2.37 and her potassium normal but her liver function was worse. The nurse came again today to take blood for a liver profile but was unable to get any blood. They will try again on Monday. My 86 year old Dad is finding it really difficult and frustrating that he feels nothing is being done. Is it normal to wait 2 weeks from the MDT to the time you see the consultant? 

Thank you

Cazza59

Hello cazza59, 

Thank you for updating us on your mum's situation - you really are doing everything you can your mum and dad must be feeling very grateful for your support and I hope you get some answers soon. 

As for your question about the time frame between the MDT meeting and seeing the consultant, it might be a good idea as Jenn suggested to give our lovely nurses a call on Monday morning and I am sure they will have some good advice for you. Hopefully other members who have been through the MDT process will also come and share their experience with you. 

I hope they are able to take your mum's bloods on Monday and that you get a bit more clarity on everything soon. 

Best wishes to you and your mum, 

Lucie, Cancer Chat Moderator

Hi Lucie

Thank you for your kind words. Mum's about the same today. My Dad was very tearful yesterday as he feels he's just sitting watching her fade away. She's eating less all the time. she's lost about half a stone in a month or so. I think I will ring your nurses tomorrow for some advice.

Many thanks 

Kind regards

Cazza59

Hi

An update. I saw Mum on Monday 15th and she wasn't getting about very well and hardly ate any lunch, less than our 1 year old grandson. We left her to rest on the bed, waiting for a nurse to come and take blood. I went home and was visiting a friend, when my Dad rang in a state saying she was getting worse. I went over and he was so upset saying he thought she would be dead by the weekend so we decided to call the paramedics. I felt her breathing had started to deteriorate also, it was quite laboured. The paramedics did checks and decided to take her to hospital as they thought she was dehydrated and was tachycardic and they thought she was starting a chest infection. Once in A and E after a couple of hours wait, she had blood tests and a chest x-ray and was started on a saline drip. Luckily no chest infection and they said her calcium was normal (?) and were talking about her going home again. We said no, we felt she was too poorly.She spent all night on a trolley bed in A & E and was then moved at 4pm Tuesday to an assessment ward. I had managed to speak to her oncology consultant on the Tuesday morning and told him we know she has secondary lesions in her lungs and they had biopsied to try to find the primary tumour. He said they were suspecting it may be high up in her bowel and he didn't think it a good idea to do more invasive tests which would not prolong her life anyway. He said her liver was so full of tumours that at her age, 84, she wouldn't tolerate chemo. He gave an estimate of 4-6 weeks left, maximum 3 months. I have typed this factually but it is heartbreaking to hear and he couldn't have been kinder over the phone. He said he usually prefers to give this information at a meeting, hers is scheduled for 25th July, but realised that we can't be kept uninformed that long. Today we have visited her on the assessment ward and she is waiting for an MRI scan. We asked to speak to a doctor (yet another one) who said she is  not an oncologist but she did explain that the MRI is to be of Mum's spine to see if she has any spread to her spine as she now has a lot of back pain. Her calcium  has gone up to 2.9, higher than we are aware it's ever been and her potassium has gone low again. So not good to hear, any of this. We did speak to the medical staff yesterday about her having morphine and she's agreed to have some if needed and also the difficult decision to have a DNAR in place. I had told my sister what the consultant said over the phone but not Mum or Dad. We felt it best to leave them with some hope. How do you know this is the right or wrong thing to do? We are all devastated and heartbroken, I just keep crying  and she does too but is a bit better at controlling herself than I am. At least we have each other and will try to be strong for Dad. After hearing about the possible spread to Mum's spine today, we have sat and talked to Dad who we realise now is prepared for the worst. I still haven't admitted to Dad I've spoken on the phone to the consultant. But we don't know, any of the 3 of us, whether Mum realises she's probably not got much time left. How of earth do we tell her? We feel it's probably best to wait until the meeting on the 25th. She does seem to be breathing a bit better today but this may be because she's sitting out in a chair. But she is now basically off her feet, is having to be moved up the bed on a slide sheet and just standing with a Zimmer with 2 to transfer her to a chair. Does anyone have any advice or comments to give. This is all so hard. 

Regards

Cazza59

Our beautiful caring loving Mum sadly passed away around 2.15am today. My Dad stayed with her till the end, he had wanted my sister and I to go home. We had all been with her from 3pm till around 7pm then he sent my sister and I home. We all felt she hadn't got long left but he wanted to stay for the last few hours with her on his own. My sister and I kissed her goodbye and I said to her "Go to sleep Mum".

We got a call from the ward around 2.30 am to say she had gone. We went to collect Dad and he said he had held her hand and she died in his arms. He said they had a chat and she told him what a good life they had had together and what a wonderful family they had raised. I don't know if this chat did happen or whether he imagined it but it's given him comfort. Was able to spend a little time with Mum saying goodbye. From diagnosis until her death it was just a month. So quick but she must have had this awful disease for a long time. But now she is at peace and no longer suffering. 

I've just ready your posts and just wanted to say, I am so sorry for your loss xx

Kirsty TMH

Thank you so much xx