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Two cancers at once 
Créé par Juliet27
08 janv. 2021, 20 h 58

My husband, 66, has recently been diagnosed with both stage 4 oesophageal cancer plus high grmade follicular lymphoma. He is being very matter of fact and even cracking jokes. I'm devastated. The doctor said he may have two years left, but we think that's optimistic. He's started chemotherapy. Every time I look at him I'm reminded how ill he is as he is so skinny. Has anyone else been through their partne having two cancers ?
 
09 janv. 2021, 4 h 44

Dear Juliet27, 
What a double blow for you and your husband. I have not had your experience, but like you I saw my husband change before my eyes in terms of weight loss and how ill he looked. Pictures from that time are hard to look at - I think because they remind me of how difficult a time it was. 

Although so much in your world is spiralling out of your control, do you think your husband, being matter of fact and with a sense of humour,  is responding as normal? I wonder if he doesn't worry about you as much as you do him.

Are there friends and family you can lean on - perhaps not physically now but via phone or text? 

Welcome to the community Juliet27. Know that this is a safe place to talk.
Warm regards,
Katherine
 
Réponse de Juliet27
09 janv. 2021, 19 h 37

Hi thank you for taking the time to reply. My husband has never really liked to talk about deep issues. When I or our daughter has cried in front of him since he was diagnosed, he has got upset and said to me and to others, that the worst thing about all this is seeing the female members of the family upset. He is a typical high achieving male as in he is a problem solver and has put all our financial affairs in order and tried his best to sort everything out. I do have a sister and friends I can talk to but there are some things I would never say to them. I'm grieving for the life I thought we had ahead. We've been together since I was 17 and I'm 63 now. We still irritate each other now and then and I can't understand why he still gets annoyed by small marks on carpets or things being slightly grubby- can't change the habits of a lifetime I guess! Also why keep a new jacket 'good'?! Covid makes everything so much harder, plus the winter weather. 
warching the person you love going through all these treatments which make them feel hellish, knowing they'll never get better is really hard. It's just buying a little more time. It's not romantic, it's not sentimental, it's not like a movie, it's just horrible. This is helping me get it all out!!  
 
Réponse de Mert
10 janv. 2021, 4 h 23

DearJuliet 27,
I admire your courage in looking with honest clear eyes at the many facets of loss and suffering in your current situation. Our society tends to put a Hollywood gloss on so many things which in real life are, as you say, just plain horrible.  It's like you're walking along with life serving up the usual frustrations and joys, and suddenly the ground opens up under you and you're in a deep dark pit. the old 'normal' is gone; the new one is like a nightmare that you can't wake up from.  I think all of us have had some experience of our lives being suddenly turned upside down, but few have faced the double whammy of two dreadful diagnoses at once.  All of what you're facing is hard: watching your husband suffer not just from the cancer but also and most immediately now from the side effects of the treatment; managing the frustration level when everyone in the household is in distress and expressing that in different ways; being blocked from open sharing of your feelings together by the  'big boys don't cry' conditioning that blocks your husband from expressing his feelings and receiving yours. Where I especially see your wisdom and self-awareness is in your recognition that a big piece of the grieving is for the death of the dream: all the expectations of growing old together, of retirement and possibly doing some of the fun things you haven't had time to do before; all that might have been is snatched away, and a fearful and uncertain future is takaing its place.  
There is no magic wand here; just safe space to let out the rage, grief and fear, to be heard, accepted and held with caring and compassion. 
And virtual hugs!   
Mert

 
 
Réponse de Nouce
10 janv. 2021, 14 h 00

Dear Juliet,

 

I know about a partner who doesn't like to talk about deep or complicated things--and the more personal, the more he resisted. He didn't suffer from two cancers, but his leukemia invaded the nervous system, creating two different sets of deastating symptoms.

 

I can imagine how overwhelmed and sad (and maybe angry) you feel. Know that your feelings are real and valid, and a sign that you are normal.

 

It is often tricky to find places to express and deal with your feelings. The CVH forums are one such place. Do feel safe and cared for here!

 

I also hope you will find some (however) small space for beauty or rest--maybe just a tiny candle.

 

With care,

Nouce
 
Réponse de Juliet27
10 janv. 2021, 18 h 53

Thank you Mert and Nouce for your thoughtfu replies. 
one thing is that we have had fabulous holidays to lots of different countrie. we've never been a couple to wait to do things once we retired, and having our family very young meant we've been free from having to consider children for quite some time . We've been retired for 4 or 5 years.
Anither aspect of this is covid. I was just thinking today on a grey drizzly Sunday in January with nowhere to go and no one to see that I'd probably be depressed anyway! Never mind that my husband is dying too. He has had three cycles of chemo and was a bit unwell after number 2, requiring an afternoon in hospital. And very unwell after number 3 and nearly died. After a break he's now resuming it next week, a lower dose, but naturally we're both very apprehensive. The responsibility gets to me, I have to check he's ok and seek help promptly if I'm worried. All whilst having to do everything in the house too.
Youjust wonder why? Why did he get these cancers? He puts it partly down to stress, from a very stressful job from which he escaped in his early 50s, plus the strain of tending to his awkward cantankerous  old parents ( his mother is still alive at 90 and has caused us so much stress over the years) So stress plus stomach acid silently making its way up into his oesophagus. 
Anyway there are lots of people way younger than my husband who have been cruelly robbed of their future. I'm hoping that I can focus on the good times, eventually 
Thanks for  reading!  
 
Réponse de Mert
10 janv. 2021, 22 h 31

Thanks for sharing!
I'm glad to hear that you aren't a couple who has postponed pleasures; it's always especially poingnant when unexpected illness and early death leaves people saying "We should have travelled when we had the chance" or "I wish we'd given ourselves permission to have more fun and now it's too late".
'Why?' is such a universal question with cancer.  My youngest son developed cancer a few years ago: he was the healthiest of all my children, a marathon runner who took good care of himself in all ways.  So why him?  I think there are many factors, stress amonst them, that can make us more vulnerable to illness, but in the end there's always a degree of randomness about it.  Bad things happen to good people and somehow we have to learn to live with it even when it doesn't make sense or seem fair.
Chemo is definitely an intervention that sometimes seems worse than the disease.  As you said in an earlier post, when an intervention makes a person feel even more hellish (and in your husband's case may even threaten his survival) you left wondering whether it's worth it for the bit of extra time it may buy you.  That's another hafd part of this journey: hard realities to be faced and hard decisions to be made.
Self-care!!  Super important for you right now because, as you say, you're carrying everything: keeping the household going, likely answering a million questions from relatives and friends (including playing intermediary with difficult relatives!), playing nurse and first responder, living with the stress of not knowing what the reaction is going to be to the next round of chemo.  I know it's hard to find the time and energy for self-care but please try.  You can't be everyone's rock in the storm without looking after yourself first.
 Mert
 
01 mars 2021, 1 h 35

I was just wondering how you were doing Juliet27? So much can change in two months let alone 2 minutes.

Warmly,

Katherine
 
Réponse de Juliet27
01 mars 2021, 18 h 42

Hi, thanks for getting in touch. Well, the two chemotherapies went ok as dose was lowered by a third. Now we're two thirds of the way through 15 radiotherapy sessions. He's very fatigued and having eating difficulties but we've settled more into a kind of easy routine- if he wants to reminisce I'll join in, or if he wants to talk about his illness I'll listen. He does a lot of research online.  He does mention every now and then how long he's likely got left or stuff about once he's gone but not much. We're hoping we might manage a short break late spring or early summer. Relatives are planning to visit in the summer, covid permitting, which I know is going to be emotional. However at the moment it really is a day and a week
st a time.  
 
Réponse de Mert
01 mars 2021, 21 h 00

Hi Juliet,
I'm glad to hear that the chemo was less traumatic than expected and that you have settled into living out this new reality imposed by cancer and all its side effects.  As you say, all you can do is keep putting one foot in front of the other and dealing with what each day brings.  An 'easy routine' sounds comfortable and comforting, and I love the way you are letting our husband lead in talking about the good stuff and the hard stuff as he's able.  I do hope you have a good friend who you can vent to when the whole thing just feels like too much.  That old 'care for the caregiver' thing again, but it's really important.  And of course we're alway here if you need us.
Mert 


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