Hi Jolamine,

 I hope everything is ok and you're doing well. Have you heard anything from your specialists yet? I'm really hoping for good news for you.

mom came home from hospital on Wednesday and had an outpatients appointment for an EBUS this morning but it had to be abandoned as her heart rate went up too high. They didn't get any biopsy samples so now we have to wait until the doctors decide how else they can obtain another biopsy and wait for another appointment. 

Thank you for your support and I hope you have support from friends and family with everything you're going through x

Hi George,

I am delighted to hear that your mom is back home again, but so sorry to hear that her EBUS had to be abandoned. Did the doctors mention any other way that, they could obtain another biopsy?

My appointment came through this morning. It is for 28th January. I was quite surprised that it came through so quickly, but that's not really good news, as they prioritize the more urgent cases.

We have had a nasty shock this week. We lost my mother-in-law 3 months ago after a long illness. She was 94 when she died, but she had been ill for a long time. My 97 year old father-in-law looked after her for a number of years, but we had to get carers in latterly, as she needed more intensive 24 hour a day care. We got a hospital bed installed at home and the carers came in 4 times a day, as well as nurses and doctors.

They had been together for 80 years, and he was totally lost when she passed. It was just as if he'd given up. He has always been a very active man and could turn his hand to anything. He took care of himself and his wife, who had severe dementia and heart valve failure. He did all their own washing, household cleaning, food preparation and cooking. At 97, he also drove his car, did the shopping, took his wife to her appointments. He gave up his car 3 months ago. At the time he was still a safe driver, but found that he couldn’t remember the way to destinations that he used to travel to frequently.

He has been deaf since he was a young man, but this has increased to the stage where no more can be done for him. Without his car, he has become very socially isolated and lonely.

He started to deteriorate just before Christmas, which was naturally not a very joyful one for him, despite our best efforts, but his decline in the past 2 weeks has been absolutely phenomenal.

He lost the power to walk, His legs and groin all swelled up, he became breathless, could no longer make his meals, became very confused and forgetful, complained of pain in his back and hip, speech became slow and slurred and he became very depressed that he wasn’t picking up. He claimed that his pain was getting worse each day. He forgot how to adjust his hearing aid, had no memory of certain family members, is eating a lot less, has lost a lot of weight,

We got his GP to visit him on Monday and he referred him to a day hospital for assessment. He was admitted there on Wednesday and had an ECG and an Xray and some bloods taken. By the same afternoon a junior doctor called me into another room and told me that he had cancer and, that it was extensive. We then had a consultant come in and talk to us all and again mentioned that it was cancer, but that he had inflammatory markers, which they thought might point to a chest infection, as they had seen a dark shadow on his lung on Xray. His haemoglobin was also low, despite taking iron tablets for the past 4 months and, they gave him a unit of blood last night.

On Thursday, he had a CT scan, which confirmed a primary in the upper gastro-intestinal tract with metastases in the liver and several other sites. It is also in his lymph nodes. The oncologist from our local cancer hospital appeared in the afternoon to explain this to Robert and to tell him that he is too frail to undergo many tests. He also cannot have any treatment and it is their aim to keep him as comfortable as possible, with his pain well controlled until the end. She offered to give him a prognosis, but he didn’t take her up on this. However, when I spoke to her later, she told me that he would be lucky to have a couple of weeks at best. She then advised him that the hospice would be the best place for him to get the care that he needs. We were hoping to meet some people from the palliative care team on Friday, to arrange his transfer to the hospice, which will be handled as a matter of priority. These people never arrived. We have been told that they could still come in over the weekend or on Monday.

We spoke to another junior doctor today, who informed us that he will be in the hospital at least until Monday, when he is due to see another consultant. This consultant holds his MDT meeting on Monday too, so he will be the one to decide when my FIL will be transferred.

It seems so sad that he has to end his days in this way, after almost a century on this earth.

I expected to see him go shortly after my MIL, but this has really knocked all the family for six.

My apologies for the diatribe. I shall let you know how he gets on.

It’s just as well that we never know what lies ahead of us isn’t it?

I hope that the doctors come up with a solution for taking your mom’s biopsy and, I hope that it doesn’t involve too long a wait.

Kind regards,

Jolamine

Hello Jolamine,

   What terrible, terrible news for you and your family. It's heartbreaking. I'm so very sorry for you all. Your father-in-law sounds a remarkable man, coping with everything he has done and managing to cope with running the house and looking after his wife, especially at the age of 97! He sounds amazing! I'm so sad for you. You already have so much going on and now this. Why is life so cruel? Please do keep me updated with everything that's going on, sending you good wishes and hoping something positive happens for you soon, God knows you deserve it..

best wishes X

Hi George,

Many thanks for your good wishes.

This is definitely not the news we expected and, it certainly is heartbreaking.

Yes, he is a remarkable man. I found him trying to take his new trousers up for himself just about 6 weeks ago. Again, he wouldn't hear of me doing it and insisted on doing it himself.

We are now waiting for a bed to become available in the hospice. The oncologist told me that he has priority for admission, so I'm hoping that he gets in there before the inevitable happens.

He is sleeping almost all of the time now and is not eating. All that he has had today is a tiny cup of milk. My hubby, who has heart failure, isn't coping very well with all the visiting and associated stress, but I'm sure that we'll get through all this eventually.

How has your Mom been today? I'm sure that she must be very glad to be home instead of stuck in hospital.

I don't suppose that anything will happen until after the weekend, but I hope that her care team come up with an alternative way to take a biopsy. All of this waiting must be excruciating for you and your family.

I am thinking of you all and hoping that you won't have much longer to wait before a solution is found.

I shall keep you updated too.

Kind regards,

Jolamine xx

Hello Jolamine,

     How is everything going with you and your family? I really feel for you all, what a sad time. It's so hard seeing someone who was previously so able becoming dependent on others and unable to do the things they loved. It's horrible. Life is so cruel, cancer is horrible. Has your father-in-law been moved to his hospice yet? I do hope he has by now and he's comfortable and has all his loving family with him. All my thoughts are with you all.

mom is glad to be home but still hasn't been out of the house at all. She has an ultrasound next Wednesday which I personally don't understand what for: it's not a biopsy and what can an ultrasound show what a CT or MRI can't, and show much better? 

We shall wait and see I guess. Thank you for support and I wish you and your family well. You have already been through so much, it's so unfair. Take care of yourself, best wishes X

Hi George,

We were initially told yesterday that he was too unstable to be moved. However, there was a meeting at the hospice this morning and we received a phone call after that, to tell us that he was being admitted to the hospice this morning. He was examined by another palliative care doctor, who declared him fit enough to travel the mile to the hospice.

He is so much more comfortable in there. The hospice only opened in November, so everything is fresh and new. We were delighted today that he had a lucid patch just after he was moved, when he was able to tell us that he was glad to be in the hospice at last, so he knows where he is. He is still not eating, has reduced his fluid intake and has gone downhill a lot since the Palliative Care Consultant saw him yesterday. She is now talking days instead of weeks. It's hard to believe that so much can happen in less than a week.

I am glad to hear that your mom is happy to be home. I hope that her ultrasound scan goes well next week. You may not see your consultant on Wednesday, but you could always try asking the radiologist the reason for an ultrasound, on top of all the other tests you've had.

Please update us as soon as you hear anything.

I am thinking of you all.
Kind regards,

Jolamine xx

Hello Jolamine,

  how is everything going? I'm thinking of you and your family at this time. I'm so glad your father in law is happy to be in the hospice and he is able to see you are all around him and caring for him. What a horrible time it is for you all, it's hard to see the good in life sometimes when you are hurting so much.

mom is becoming very down and still hasn't left the house since 3rd January. She feels sick and tired all the time and is not doing any of her normal things. She is withdrawing in my opinion. I have a horrible feeling that if she goes to the consultation and they tell her they can't cure it then she will refuse any 'life' lengthening treatment because she seems like she's had enough already and this is only the beginning. 

Thank you for listening and I'm sorry for going on when you have so much going on yourself. Thinking of you all,

best wishes X

Hi George,

Sadly, my father-in-law has gone downhill very fast since he was admitted to hospital and, he passed away on his first night in the hospice. All of this has happened in the space of less than a week and we are all feeling stunned at the speed with which this has come to pass. Life can certainly be very cruel.

I am not surprised that your mom is so down, when she hasn't been out of the house for almost a month. I certainly felt sick and totally exhausted for the first 7 years of my treatment and withdrew from most things, simply because I hadn’t got the energy to participate. My poor husband tried to bring me to the theatre or cinema in the hope of taking my mind off all that was going on around me. I lost count of the number of times he had to elbow me to wake me up throughout the performances.

I can appreciate that you are terrified of your mom refusing treatment. There is a lot to quality of life, as opposed to length of life. Going through chemo or radiation can be really hard for some people to get through and, can carry side-effects, so I can also see it from your mom’s viewpoint. Remember, that the choice should be hers and, even if you don’t agree with this, she will need you to support her decision.

Have her doctors come up with any new tests for her yet?

Have you said anything to your sister yet or are you still waiting until your mom’s tests are complete?

I am thinking of you all.

Kind regards,

Jolamine

Hello Jolamine,

   I'm so very sorry for your loss, what a terrible terrible time for you all. My thoughts are with you all. PLease look after yourselves and take things easy. I wish there was something i could say or do to make things better for you.

 Have you heard back from your dermatologist yet? You have so much going on right now, its so unfair. This year seems to have started off badly all round. 

we had to call the out of hours doctor for mom on saturday night as she had bad pain which was different to her ordinary pain and her pain meds weren't touching it. They put it down to her 'illness' and said to call again should it get any worse. Its the waiting, the endless waiting. I think i'm staritng to appreciate the posibility of mom refusing treatment and i think i could understand why. If she feels this ill now, how would she cope if chemo makes her feel worse? it wouldn't be worth her extending her life if that life is filled with pain and exhaustion. 

I'm so sorry for you and your family. Illness and coping with everything that goes with it is so hard. Please take care,

Best wishes X