How do you discuss terminal cancer

I know how you feel, waiting is so hard, you want the scan and don’t want it all at the same time, sometimes I can’t believe how I cope, but I do, I refuse to give in but to be honest, I feel quite worried at the moment, it’s one thing after the other.

Firstly, our daughters ex husband, a complicated man, who abused our daughter for years, who has never been that bothered with his daughter but that’s another story,  decided to go against local council advice, and common sense, to travel down from the northwest to Devon, his area is about 467 per 100000 and heading upwards, Ours is about 50 per 100000,  to collect our granddaughter at a service station, more risk, then drive for another 3 hours to visit his elderly father, with exhausted child. He knows my husband is classed as extremely clinically vulnerable and his father is at risk but it seems he didn’t care about the possibilities of spreading Covid, he probably dislikes my husband but obviously doesn’t care about his father either, and so 5 to 10 days watching and being a little detached, hard when we all live under the same roof.

This afternoon we hear that a TA who works at the same school as our daughter and the school our granddaughter attends, has been told to self isolate, as she saw someone on Sunday who has tested positive, not that she spent more than a few minutes in passing but it shows how close it is, and we live in a village. More worry, I’m trying to persuade my husband we could move downstairs and have less direct contact with the girls (it’s a 5 bed multigenerational house so plenty of room to separate) or just book a holiday flat on sea front, I spoke to an owner a couple of weeks ago, just in case, so it’d be easily done. But he doesn’t want to do either, says he won’t catch Covid ...... I plan to work on him tomorrow when he’s not so exhausted, we have to do something. 

Its like everything is against us, if people just used a little bit of old fashioned common sense and stopped being so selfish maybe we wouldn’t be in such a bad situation with this bloody virus. Rant over, sorry, today I am 69 years old, it’s probably the worst birthday of my life.....but tomorrow is another day.

Budge x

Hi lovely ladies. It sounds like we are all facing very similar daily challenges and today I think we should all give our selves a virtual pat on the back. We are strong even though we cry, we hold the family together even though our hearts are breaking. We have got this and we will be ok. 

I have been having CBT as I lost myself and had a really dark depression. It has made me realise several things and the most important one is to get out and see your friends. I try and do this at least every other day and I surprised myself at just how much I had lost myself being my husbands carer and the isolation that Covid brought. . I rediscovered parts of me I had truly forgotten and it makes coping at home so much easier. This weekend I even went wild water swimming ( no wet suit!) in a lake. Up until now the fear of Covid had stopped me doing anything, but now I am being sensible but I am going to meet friends. 

Budge I totally understand your anxiety around the Covid, it is scary.  I don’t want to give advice if not wanted or to down play your anxiety, I have been there in my own head, however, in my cbt session today we were talking of ways to reduce / live with anxiety. If the worries are about something that hasn’t happened and may not even happened, it is called a perceived worry. When you catch yourself worrying about something that is like this ( your fear of you all getting Covid -btw  your daughters ex husband sounds like a real insensitive man)  you say to yourself I will worry about this later and you set aside a time each day 1/2 hr to just think and worry. It sound simplistic but it has been working for me as it stops that exhausting mind loop. I find I don’t actually want to spend half an hour worrying! 

meanwhile still waiting for scan of brain results to see if it has spread. I think it has as my hubby is really not himself. No filters !!!!! He comes out with some real gems. 

Anna. x  

Hi everyone it’s 3 o’clock in the morning seriously thinking of getting sleeping tablets to help me sleep. Anna that sounds interesting CBT I have heard of it and I might look also at having it. It sounds like it’s helped you.  It is so true what you say  while looking after someone it does take over your life. You made me smile that you went wild water swimming good for you and you felt better for it . I am not that adventurous but I have booked a Pilates class this week. I understand the anxiety around the scans and that horrible time waiting for results that seems like forever. I hope it will be good news for your husband.

Budge it must be a constant worry for you trying to keep your husband safe from COVID also yourself. I don’t have anyone living with us but I do worry my husband now his immune system is so low would catch it. To have cancer is bad at any time but this has got to be one of the worse times with this COVID to have it. My husband like your don’t seem to worry about it. 

Hope and strength to you all MilieXx

Morning Anna, I’m always receptive to advice and CBT I think is what my daughter used in her marriage breakup, so it’s definitely something I’ll investigate, we’ve got a lot of this stuff ahead. But it’s 6:26 am and it’s a new day, lots of cleaning should keep me from thinking, too much. I guess I should speak to hospital to let them know what’s happening and I will check out the holiday flats.

Wild water swimming and no wetsuit. Impressed! We haven’t been in sea since latest treatment started but don’t think I could face it without my wetsuit. 

I’m so sorry for you, waiting to find out the results, wish I could find the right words to help but maybe some more wild water swimming

Take care Anna...all my best Budge

Oh Millie, I hope you got some sleep, I think I got 5 or 6 hours, so all good. 

I think I’ll check out holiday flat, clean, a lot and probably should let husbands hospital team know of developments, I guess they’ll give him another test, he really didn’t like the one up his nose said it hurt, but he’s not due to go for another 8 days so there’s time before his next treatment. I’ll be in the bad books, again just don’t want treatment to be cancelled.

It seems some people like our husbands are just better at blocking out stuff they can’t change, maybe applying CBT is what we all need. Enjoy your Pilates.

All my best. Big hugs....Budge 

I guess you’ve had the scan, so hope the wait for the dreaded results passes quickly, you know you must keep busy, so hope you get positive news. After next cycle they plan on scanning my hubby. dreading it. 

Well  it’s 4:20am or ridiculous o’clock and of course rather than thinking too much, I google, not the best thing I’ve done. It’s all Covid and Brexit. 

Budge

No! Not google! It’s just the worst thing isn’t it? I’ve done a little bit myself but to be honest that was more when hubby first got diagnosed in December. I tend to just stick to this site now. Better for my sanity and anxiety levels.

Scan was yesterday so he’ll be quiet now waiting for results next week. I can’t imagine the pressure waiting to hear if it’s getting worse or not. He cried last time it was awful.

covid is a nightmare and just raises the anxiety so I understand those of you who worry. You just don’t know do you?

Anna you are inspiring with your wild swimming and going out and meeting friends. You’re so right about trying to rediscover ourselves. I feel that’s important as I’ve just become consumed with keeping hubby safe. At some point it may be just me so I have to learn to understand what I want in life. But all that is something for the future. My priority is hubby and being there for him.

milie I hope your sleep improves. I actually sleep well which is good. Makes such a difference when trying to cope with all then challenges.

thinking of you all x

Hi everyone hope you are all keeping sane with COVID news everywhere hopefully a vaccine will be found soon. It is a big worry for people with low immunity as if having cancer is not bad enough.

Bramblejoo sleep is still bad I guess to much on my mind.
I know exactly how you and your husband feels waiting for the scan results and the terrible anxiety it cause. Family and friends mean well and say do something keep busy but it’s hard when the results are so important to you. I was allowed in with my husband for his last scan results and I was trying to be strong for my husband but I was feeling sick with anxiety. I don’t think people ever could understand unless you have gone through it.

I hope your husband’s scan bring good news. 

Budge  

what did we do without google. I was thinking of people long ago they probably had to get a book to get any information can’t imagine that now.

keep strong everyone xx

Hi Millie

I find myself wondering around this website looking for hope, My husband was also diagnosed with oesophageal cancer, which at point of diagnosis had already spread to his lymph nodes, lungs and liver. Incurable but treatable, he was told that he had months or months and months... that was in May of this year..  His is an adenocarcinoma tumour which is currently being treated with Trastuzumab and FLOT and I have watched in the past few months how my husband has deteriorated and pulled it all back again..... Initially I struggled, just thinking of how tough this was for him and how I was going to be left here without him....but more recently we have both changed our focus, though he was always more determined and positive than I. Now we discuss this condition, we read through Macmillan together, we do crystal healing, Chakra work and meditation and we focus on our future because in reality, not one of us know how long we have left...

I hope you and your husband can move past the initial shock and acknowledge that the every growing research provides new positive treatments and opportunities for so many,  and may both of our husbands be amongst them.

Sending you both strength and healing

Lowe'

Hi Lowe

Sorry to hear your husband is also suffering with this terrible disease. What a terrible shock for him to be told he had only months at the point of diagnosis. It sounds like he is a fighter and with his positive attitude it can only help him. I think it is fantastic that you both can discuss and practice healing together sounds like you are very close. This will help you both.

I am now pass that devastating first shock of knowing that my husband has limited time and I feel a bit stronger but still very sad to think of life without him. He is well at the moment and is tolerating the chemotherapy well.  He still hasn’t discussed the fact that it is palliative chemotherapy and there is no cure. Although he did say when he was first told the cancer had spread that there is nothing he could do “it’s the cards he was dealt in life”. He was always a very quiet private person and never one to discuss his feelings much. 
Like you say no one knows how long we have on this earth, it did occur to me this week because I felt so ill myself that I could die before my husband but I am recovering now. I think it has be all the stress so I now an going to do a bit of medication every day if I can.

Strength and hope to you both

Milie x