Floundering

Hi, I've just begun here and just seen your post. My partner has also been diagnosed  with oesophageal Cancer about the same time. In her case it's also spread to her lungs and maybe her back. Just like your husband she struggles to eat anything other than yogurts, jelly, ice cream or prescribed Ensure+ drinks which she can only just manage for her nutrition. She also has COPD and Asthma and a chest infection which is making eating harder. She had a stent fitted last week but it hasn't improved very much. She has these awful asthma attacks with the infected chest. I am hoping she will drink more easily, she is on the 3rd lot of antibiotics but as she eats so little it's a losing battle. I hope your husband finds some stability soon so he has better days. My partner also needs that and it's worrying so that's why I'm here.

So sorry to hear about your partner! It’s so hard to have to watch them struggle with everyday tasks. My husband has really gone downhill since this chest infection and has awful pains in his legs. He was put on amitriptiline to try and help with this but it’s really disagreed with him and he’s been having awful dreams and sleeping all the time. That’s been stopped and his morphine dose doubled so hope he will get some relief. It seems that they just need to experiment until they get the right combination  to make them comfortable. I just wish he could be out of pain. 

Hello Polly42

I’m really sorry you have both been going through so much.  Despite your husband’s decision not to have chemo have you been under the care of the Upper GI team at your local hospital?  The nurses are usually very good at giving advice and support although I appreciate things are very different now.  They might be able to suggest who to turn to for answers about the leg pain - as ever (I always say this!) don’t let the doctors/nurses allow you to feel abandoned, you are as entitled as anyone else to help so please try to persevere with your fight for answers.  If I can help at all just ask, I’ll do my best to support you.

Take care.

J x

Hi Polly42, firstly, I'm so sorry that you find yourself here.  I can share our experience over the past 6 months since my husband's diagnosis in January, but I'm afraid it's not pretty.  You don't get training, & nobody ever talks about how out of control & basically shit it really is.  BUT.  You've done the right thing by reaching out.  There are so many people who will help you mentally & emotionally, & maybe with hints & tricks we've picked up on the journey.  My husband has completed chemo, which frankly didn't help & left him just a shadow of himself, in retrospect he says he wouldn't have had it, but of course, when it's the only deal on the table in the face of a terminal diagnosis, most people will take it.  I admire you both for choosing not to do it.  As my husband is no longer being treated by the hospital, he has basically been 'discharged' from the upper GI team, & is now solely in the care of the local hospice team.  We are very lucky to have been assigned a hospice community nurse who has visited a weekly & is proving a godsend with sorting out meds.  We've also been referred to Occupational Therapy, although we are awaiting a call & visit from them, & to be honest, with a 3-6 month prognosis, every day counts!  The focus for us now is on physical & mental comfort, & Weston Hospicecare so far seem to be on top of that for us.  The Macmillan team down at the hospital have also made it clear that they are there if we need them.  I guess that it's probably a different service in each part of the country, but my advise, such as it is, would be to lean heavily on your community nurse.  Ours has liaised with the GP & pharmacy for drugs, she is visiting weekly to check on how Gary is, she's referred us for OT & mental health wellbeing, she's advised re contacts for mobility aids/advice, organized 'just in case' meds for administering out of hours by district nurses, & the morbid, but neccessary 'respect' instructions for end of life planning care.  Despite this support, there is no doubt that life is basically a shit storm, throwing up different challenges every day, as well as grieving already for the life we have lost & the life we now won't have.  I try to go for a walk or a bike ride every day, I make myself a nice coffee & sit quietly in the garden, I have a g&t every evening!  But watching him get weaker, now sleeping most of the day & not getting out of bed, breaks my heart into splinters every minute of every hour of every day.  It sure 'aint like this in the movies!!!!  Sending love & light & hugs to you in your dark place. x

Hi, it sounds like we’re in very similar positions, you describe it so well.  Hearing your husband’s experience with chemo I’m glad mine didn’t take it. He can now only take liquids and trying to get him to eat anything when he doesn’t fancy it and it hurts is very difficult.
A week on since my post and we have had a bit more help, on Sunday I rang 111 using the special number the Outreach nurse gave me and he couldn’t have had better treatment. After 8 hours at the hospital, 3 of which were on a drip to rehydrate him, he’s been diagnosed with clots in his lungs, this is why he’s been so short of breath obviously , we were talked through the respect form and DNR which is so frightening. He now has to have a blood thinner injection every day, which I have to administer. The implication seems to be that the clots could take him before the cancer.  As you so rightly say there is something new every day, I feel like I’m in a play without a script

The GP rang and talked us through the situation which was helpful and the Occupational Therapy team have brought him a Walker and blow up mattress protector and cushion as he spends most of the day in bed for now.. The G P said it could take weeks for the clots to disperse.  

I do feel I have a bit more knowledge now and am asking as many questions as I can but I’m continually worried that I will do the wrong thing or not do the right thing, it’s so scary being responsible for everything and trying not to weep every time you see such a strong, active man reduced to this state or thinking of all the things we’ll never do again.

Thank you for replying, it does help to write it down sometimes. Continue to enjoy your quiet time and I wish you the strength to get through this unimaginable situation. Hugs to you. XX

Thank you for your reply. We were assigned an UGI nurse but have been turned over to Outreach nurse now, who has  visited and helped sort medication out and given advice.

Since I wrote last he really seems to have gone downhill, the agitation has lessened a lot but all he has done is sleep. He says the pain in his legs is better but still can only shuffle around, he also feels very dizzy and lightheaded and says he can’t see properly. He also hurt his back when he fell out of bed and I’m wondering if he’s cracked a rib as it’s so painful.  I am beginning to wonder if the disease is taking hold now and if he is no better in the morning feel I shall be calling the number I have been given for palliative care out of hours. 
Thank you for listening, there’s only so much you can burden friends with.

I Wrote this last week and for some reason it didn’t post. As you can see by my answer to jazzcatlady I did ring on Sunday.

Hi Polly42

I am sorry that I have not entered into conversation with you before now, and also sorry that your husband has been diagnosed with OC, liver and lymph mets. I know how devastating that news is, I know some of the rollercoaster of emotions that you are experiencing.

My husband story is both similar and different, he was diagnosed with OC, Liver, Lung and Lymph node mets, he was given a terminal diagnosis, treatable, but not curable, without treatment 4 months prognosis, with treatment just over 12 months. 

Thankfully he chose to go for treatment, side effects have been truly minimal, outcome has been absolutely remarkable.

Dal has has over 30 treatments, ever fortnight (excluding Xmas 2020) for over a year, he lost almost all of his hair at one point, lost weight, looked about 20 years older, but then, they started him on immunotherapy, combined with chemotherapy, and his hair has grown back, he eats full, normal meals, with occasional swallowing problems, but nothing compared to the early days.

I know that treatment isn't for everyone, I just wanted you to know that the experience of one person is not a reflection of the experience of others. 

Reading your posts and Jazz's, has been like re-living my own imagined nightmare, my fears and realisations, back when Dal was first diagnosed, and I wanted to send you both love and strength during this emotional and difficult time.

Take care of you

Lowe'

Hi Polly42,  how are you now.