Friends, Family & Carers Forum

[Former-Member]

@Emelia8 how are things at your end?

[Emelia8]

Hi @Former-Member  💗

Firstly, I apologise for not responding to the news about Mr Darcys latest updates. I have been offline for the best part of the last 3 weeks. Trying today to catch up with everyones news. So I appreciate you tag tonight.

Being told they are palliative is a bitter blow. I know you would have both been prepared for this news, especially given the deadly nature of pancreatic cancer. But I expect it would still come as a shock.

I was told about two years ago, when my husband was so dreadfully ill from the side effects of his cancer treatment (encephalitis) that he was palliative and would never make it home again. They moved him to a palliative care ward, and he was there for over 3 weeks, before finally working out what was wrong. Treating the brain inflamation and stopping his cancer treatment stabilised him. But he has been left with brain damage from the brain being under pressure for so long.

As for the cancer, so far so good for hubby.  He is due for more scans in a months time, so fingers crossed.

Actually, I tagged you in a post I did on my thread on the LE side earlier today. It is almost certain that I now have cancer too. Fine needle aspirations of lymph nodes and core biopsy of breast lump will likely confirm what the doctors already told me on Tuesday.

So Im doing my best to deal with that diagnosis, along with Mr Emelias anxiety that I may not be around to take proper care of him.

Its hard, and Im not dealing very well with any of it. Im scared of whats to come and angry with the world and the unfairness of it all. Its only a little over a year ago that I lost my Mum to breast cancer.

Sorry Darcy .. Im rambling. How are you holding up with Mr Darcys latest news and prognosis? And how about yourself?

Hi @Shaz51 @Anastasia @RMG @Sophie1 

Emelia 🌸

[Former-Member]

 @Emelia8  I had to go back to your post, I thought the tagging section was the end of your message and missed the whole end of it.  Devastating news for you.  Dare I say, accept all the help you can get Emelia, for yourself, palm of as much of hubby's care and housework, gardening etc. as you are able to, you will need all the energy you can get, the  prognosis for breast cancer is much better these days so please take care of you. It is so hard not to think the worst.

I find I have been able to take things step by step and after a crash following the initial operative/post infection period am slowly picking up the pace. Mr Darcy started new chemo this week, oncologist keen to point out the one patient she had that lived for 6 years; she did promise to let Mr D know if she felt further treatment was not warranted. In the mean time I have stopped worrying about how long we may or may not have, instead am racking my brains as to what I can do so that we live as well as possible despite this diagnosis.

I have been very proactive in ensuring appropriate liaison is had with the pdoc and raised concerns about particular medications that are given for nausea which could cause mood swings and it was agreed these would not be prescribed. Due to a change in docs Mr D came home with some of these and I needed to advocate. I rang and spoke to the nurse practitioner, fortunately relevant correspondence was easily located on file, the meds were returned and as his symptoms are mild at present the matter will be raised at his next routine oncology appt. I plan to discuss this in more detail as well at his next pdoc appt as there are other options which include some commonly used psych drugs and I want to be prepared and ensure Mr D is fully informed. Will also ask pdoc to relay his recommendations to oncologist.

[RMG]

Hi @Emelia8 

So sorry to hear your news.

You certainly have a huge load to carry!

I would be angry with the world too. I hope you have some understanding family/friends nearby that can give you a big hug.🌹🌹🌹

[Shaz51]

So sorry to hear your news. @Emelia8 

and sending you hugs @Former-Member , @RMG 

[Emelia8]

@Former-Member... Yeah its tough news to absorb. Perhaps just as tough having to wait 9 days before getting biopsy results next Thursday. Life is on hold until everything is confirmed. But once it is, I expect everything will move quickly. Not sure if I'm looking forward to Thursday or not. I guess it will be nice to know with 100% certainty. But at the same time, it will destroy that very small glimmer of hope that they have made a mistake and there is nothing to be concerned about. 😢

Of course prognosis is much better now for breast cancer, and I really should not be thinking of it as a death sentence. But with Mums death last year from breast cancer still very fresh in my mind ... its hard not to think of it as anything but that. Mum died just under 2 years after a mastectomy. So I know I am thinking the worst, and I also know I should not be doing so.

It sounds as though both you and Mr Darcy is very accepting of his prognosis. I'm very impressed that you are able to live life as well as possible for whatever time he has left. I guess other than screaming and shouting and feeling sorry for oneself ... there is not much else one can do really. But it takes time to come to that point I think. Right now, I'm still at the scream and shout and being angry at the world stage. And I've only got a 99% sure diagnosis yet.

That is disappointing that you are having to keep tabs on what is being prescribed to Mr Darcy. Similar to you, I have to keep tabs on a whole range of Drs and Specialists. I guess this is something that your GP would normally do, but at the end of the day ... its usually us who knows the most. Anything we dont know, we research so we know what we are talking about. Hubby sees so many specialists ... Oncologist, one Neurologist for his Encephalitis, a second Neurologist for his Parkinsons Disease, an Endocrinologist to monitor his Adrenal Failure, a Dermatologist to monitor for more melanomas and other skin cancers, a Renal Specialist for his chronic kidney disease due to kidney cancer, a psychiatrist for his PTSD, a Podiatrist for foot issues, a Physician for some kind of overall wrap up, and of course his poor GP who battles to oversee the lot. I booked hubbys CT Scans yesterday for 4 weeks time, so I can now time all the necessary blood tests around it. Cant do blood tests for a week after CT Scans with contrast, so will get that done a few days beforehand. And blood tests are needed for both the Oncologist and the Endocrinologist, both about the same time. So much to organise and fit in. I dread that I may have to fit in surgeries, radiation and/or chemo for myself as well. I just wont be able to do it.

@RMG...thank you 💖🌻 Yes I'm trying to juggle enough with all hubbys issues, with possibly needing to add my own. I really do not have any friends. And my family live 7 hours drive away. My Mum died last year, and my Dad had a stroke and has very poor mobility. He has only the past week or so decided that he needs to go into permanent care. He had been living on his own with lots of help from MyAgedCare with meals etc. But I think after Mum died a little over a year ago, he is very lonely. And when added to the fact that he has had numerous falls recently, he is feeling very insecure. So until a room becomes available in care for him, he is spending some time out with my brother on his farm. Not ideal, because its too far from medical help if needed. Hopefully something will come up for him soon. Other than that, I have a step-daughter lives 6 hours to our South and a step-son living 6 hours to our North. Both have young families, so I have 6 step-grandkids which is lovely. But we dont see them very often unfortunately. So hugs need to be virtual at this stage.

@Shaz51... thank you beautiful lady. How is your Mum and Mr Shaz doing?

Emelia 🌸

[Former-Member]

@Emelia8  waiting/limbo = 😵😵😵

Sending ever so gentle thoughts your way.

[Former-Member]

@Emelia8  @RMG 

Thinking especially of you today and sending gentle thoughts your way.

[Sophia1]

Hello @Former-Member 

Found your support notifications when I landed back on the forums.

Thank you.

So sorry to hear of the latest update with Mr Darcy.

It certainly has been a long, winding road for you both.

We have had many friends diagnosed since late last year.

It seems to be rampant.

Support for each of you so very important as you well know.

I will try to remember where you are and look in on you every now and again.

Take care both of you Mr and Mrs Darcy

💚

[Former-Member]

Thanks @Sophia1