How to manage the psychological downs... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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How to manage the psychological downside of diagnosis & treatment?

GaryNR14 profile image
11 Replies

Hi all,

I'm sure this is a subject you've all experienced, how do you manage to cope with the dark days when you receive crap news or feel the side effects of the treatment are too much? My partner is struggling with the psychological/emotional side of her diagnosis and has very bad days when she's in a very dark place, and talks about harming herself.

She's on various medications to handle this and has seen psych' & MacMillan nurses, she's also meeting a psychologist next Monday.

For me, her mental anguish is the worst problem we need to manage. She does occasionally get angry & bitter too, and this I guess is part of the cycle of emotional stages people go through.

Any thoughts would be welcome.

Thanks

Gary

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GaryNR14 profile image
GaryNR14
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11 Replies
Denzie profile image
Denzie

Your instincts are pretty good. Bus she also in active treatment? If yes then she’s on steroid medications that will increase her anger.

GaryNR14 profile image
GaryNR14 in reply to Denzie

Yes, she was on steroids for 3 days starting the day before chemo, so not sure that they'd still be having an effect on her? Who knows? I'll check with the MacMillan team.

BellaBe profile image
BellaBe

Hi Gary. I know exactly how your partner feels. Whilst on chemo I was in a really dark place and felt like nobody could help me, it really isolates you and sometimes you wonder if it’s all worth it.

In my opinion it’s all a process psychologically, you have to let your brain work through the fact that you have cancer and all the implications of facing your own mortality.

For me, I eventually got to the point where I knew I needed help to cope with it. In the last year or so I’ve now had two cycles of counselling with a Macmillan counsellor which was a life changing experience.

I couldn’t have done any of it without the love and support of my amazing husband and son who put up with me even in my most darkest of times.

You’re doing all the right things, just keep being there for when she needs you. Take care x

JanetteR57 profile image
JanetteR57

Gary, it's perfectly normal to feel angry, distress and concern for the future after a diagnosis and during treatment and not necessarily related to medication. Macmillan have a book aimed at carers/partners of those with cancer on how to talk to somebody with cancer. I also found a book called 'what can I do to help?' by Deborah Hutton (who had lung cancer) very useful to help understand what the patient is going through. For the patient themselves, I found a book called 'cancer is a word not a sentence' by Dr Rob Buckman helpful in putting the diagnosis into context and not believing everything in life was related to my diagnosis. However I must confess I did not read this at the time of diagnosis but almost 18 months later when being investigated for recurrence. Carers/partners also need support (mentally) for what they have to deal with and Macmillan will offer support to people in such situations. I'm unsure whether if she was in touch with other patients who've come through the journey so to speak may help her in what is obviously an isolating time for her. Do seek help from Macmillan or CNS (they're not all funded by Macmillan although people often refer to clinical nurse specialists in cancer as Macmillan nurses) to get some support for you both . As she's already seeing a psychologist (hopefully trained in working with cancer patients), this should help her. I understand your worry as sometimes repeating or revealing our darkest thoughts to loved ones is something we avoid - to reduce their anxiety and also protect ourselves. Wishing you both well as you grapple with life after diagnosis....

RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Dear Gary,

You seem to be exploring all the relevant health professionals to support your partner cope through her diagnosis and treatment.I hope the appointment with the psychologist next Monday is beneficial. When the time is right perhaps you both might consider attending a lung cancer support group. You could ask the lung cancer nurse specialist involved in your partners care care if there is one locally.

Alternatively you could email lungcancerhelp@roycastle.org and let us know your postcode and we can have a look at our database of support groups and see if there is one near you.There is some research evidence that a good social support network has been linked with an increased quality of life for cancer patients undergoing treatment. Nearly all studies have shown a psychological benefit for cancer patients who attend support groups. Please don't hesitate to contact the nurse led helpline if you would like to talk to someone in confidence.Freephone 0800 358 7200

Kind regards,

All the team at the RoyCastle Helpline.

GaryNR14 profile image
GaryNR14 in reply to RoyCastleHelpline

Email sent, thanks again.

Nimrod2 profile image
Nimrod2

My husband has SCLC and has had no treatment for 6 months as altjough still active the cancer has not spread. He hot through the treatment pretty well but is now quite depressed. He had a bad reaction to one anti-depressant so stopped that. We have had our first assessment session with the clinical psychologist so fingers crossed that will help. It is so hard to see someone you love going through this. Good luck to you and your wife.

Elt79 profile image
Elt79

Gary I do know how your partner feels having experienced such feelings when diagnosed 7 months ago. In 2008 I diagnosed with lung cancer within days if losing my dad. I had major surgery to remove 2 lobes if my right lung and partial 2 ribs. When I attended my 6 week check up I was told it was not cancer but an infection!! Fast forward to October last year I was diagnosed with cancer in the same lung stage IV NSCLC this time for real! I also have mets in my adrenal gland and my brain. I live alone and my 2 daughters live some 2 hours away. I was so so angry, having dealt with the misdiagnosed issue, which has left me with chronic neuropathic pain, I couldn't cope. I was on fairly high dose steroids for swelling in the brain and just didn't know where to turn and did not want my girls to take all my grief. I work in the NHS for the same Trust that treated me previously and now. I have a fantastic Nurse Specialist who immediately referred me to a psychologist - it was the best thing ever - poor man let me talk everything out for weeks!! It has helped me beyond belief as I am now coping and have let go of that anger and bitterness. I still have bad days but have my own coping strategies and know I can access the help when I need it. I wish you and your partner the best of luck and hope she can have the positive outcome from her appointment that I have had.🤞💕

Nimrod2 profile image
Nimrod2 in reply to Elt79

Great to read this. Gives me hope that my husband and I will get through oyr difficult time.

Elt79 profile image
Elt79

You will get there x

Hi Gary ,I have had upper right lobectomy initially 2015 ,then when it returned in my brain I had stereotactic radiation to my brain a pacemaker in my heart because they suspected a heart tumour that was 2017. I now have more brain tumour, more tumour outside my heart and some activity in my left lung and I am currently having chemo and immunotherapy .I have had some very dark days. Poor family .Luckily my current treatment is working very well ,everything is shrinking back .I had adjuvant chemo initially post op 2015,this was belt and braces.

All I can say is the treatment is harsh, your body is never the same ,but I also know cancer is also harsh in the way it attacks you .I was looking forward to retiring and enjoying life a bit ,but cancer and its treatments stopped me doing that ,I now walk with a stick or stroller or scooter as my balance isn't good and my left leg drags .

I decided early on to use note books to write about how I was feeling and to avoid medication due to its various side effects. I did not want to pass my bad mood onto others as I felt it was unfair at one point I did say to my husband if he wanted to leave and get on with his life I would understand ,luckily he said his life was with me and the family .For which I love him more .I am in my late 50's and have been lucky enough to take early retirement as I was a nurse .

It is not easy any of it ,we no longer go on twice yearly holidays abroad which I know my husband loves(This makes me feel guilty) .I can no longer walk miles and miles in the countryside. Prior to cancer we had a lovely life and now I tell myself I did have a good time and have done many things whilst working .So I have been lucky .

I feel for your wife/partner it is not easy to feel good and be upbeat when you feel like you have been robbed of your previous self and the truth is no mater how well intentioned everyone is around you ,we are walking this lonely path alone .My note books help me keep perspective and they are not positive for others to read ,its just somewhere to put the negative thoughts .I will burn them before I leave .

I also go out daily even if its just around the block sitting on walls as I go ,the air is different and nature however small an example brightens my mood .We have recently moved back to the city just because access to buses is easier for me .I am no longer able to drive as I have also got epilepsy (which is now controlled ) caused by tumour.The city has been surprising we have good neighbours even the 'student lets' supply us with either entertainment or lost souls who want to have a chat .

I hope the psychiatrist is able to help your wife no doubt she /he will be able to advice her. We are all different and manage things differently I hope her clouds become less and that she can find a way forward ,it is not easy .The more active you have been in your life the harder it is .I have joined a couple of groups a knit and craft group in the local McMillan centre and a knitting for charity group in the city centre .This is more about getting out and talking to others about cancer or anything really .Just try and get her to do something that interests her but usually in short spurts .Prolonged activity is exhausting .Good luck with everything Diane .

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