Managing Anxiety? (caretaker & patient)

[hopejunkie]

Dear all: I'm the primary caretaker for my father who's 77 and recently diagnosed with NSLCa. He is finally starting treatment on Targrisso next Tuesday and will take it for 1-2 months prior to likely a thoracotomy. As you can imagine, the anxiety from the diagnosis to understanding treatment options has all been so overwhelming. (It has even impacted by 8 year old who's behavior has changed dramatically.) We're looking for advice on how to manage it all (beyond eating well, sleeping well, and exercising). How do you stay sane? How do you stop swirling and break out of a constant state of anxiety? Thank you in advance.❤️🙏

[Denzie Moderator Volunteer]

When my mom was diagnosed it was a bit like gravity stopped working and the floors disappeared.

There were many people who said we should call if we needed anything. We took them at their word. We had them come sit with mom so we could grocery shop, spend time shopping for ourselves, driving her for radiation when we were scheduled to work. Some slept in her room overnight on a futon so we could spend the night in our own beds. Mom asked that she never be left alone after a bad experience with a nurse on the neurological ward-when they found her brain mets.

She and I went to group meetings at the local Gilda's Club. They had a caregiver group in addition to the patient group.

Talk to the oncology social worker at his hospital. They will know of any support groups meeting virtually.

[Denzie Moderator Volunteer]

I forgot to mention that the Go2 Foundation can support your dad by setting him up with a phone buddy. Also, they have a comprehensive list of support groups by state. You can access both by visiting this page: go2foundation.org/resources...

[anrean]

Love your name! In addition to the things you mentioned, I found a support group very helpful. If there isn't one locally, maybe you can start one for all types of cancer at your library, church or community education. I also talked - a lot! I am in the somewhat unique position of being a patient and a caregiver (I'm working through my 5th primary cancer and my mother was diagnosed last year) and have to say that being the patient is substantially easier. Seek out help from Hospice and/or Palliative Care, you don't need to be close to death for Palliative Care to help and many Hospices don't require it either. Your child might benefit from being put in structured sports so that s/he has an outlet and friends to share with, too. Is there an "elderly services group" in your area? Often they have the word "legal" in their name, but can be a wealth of information on so many things that aren't legal!

[hopejunkie in reply to anrean]

Thank you, Anrean for your advice and taking the time to respond! I do have my 8 year old in more camps this summer so that she's occupied. And we've actually since found a parenting therapist to help us with her big emotions. Sadly, she feels feels left out since I now also spend time managing my father's care and seeking out resources. I'm trying to strike a balance with my roles as a daughter, mother, and wife. I will look into "elderly services groups" but the added complexity with my father is the language barrier so I continue to act as the conduit. Sending you well wishes. ❤️🙏

[anrean in reply to hopejunkie]

Seek out translators through the senior services groups - praying you find a healthy balance

[Feelingblessed2013]

Ask everyone, doctors, nurses, the hospital, senior centers, senior services. There is help available, find it and accept the help when offered.

[hopejunkie in reply to Feelingblessed2013]

Thank you Katherine. Good advice. I have and continue to do so. With the language barrier, I continue to be the conduit. We've found one support group and with one meeting, it was already so helpful for him to see others. Sending you well wishes. ❤️

[Denzie Moderator Volunteer]

I know it's only been 2 days but I'm hoping that getting dad started on treatment helped reduce the anxiety.

[hopejunkie in reply to Denzie]

Hi Denzie, Yes, my father begun systemic treatment this week. Today is day 5. Sadly, I've moved on to worrying about the next thing: the upcoming thoracotomy where they'll likely remove a lobe. It's not walk in the park for anyone, let alone someone who's 77 y.o. Thank you for your note and thoughtfulness, Denzie! ❤️Please stay well.

[Feelingblessed2013 in reply to hopejunkie]

I'm only 64, but I have had both upper lobes removed. The last one was 3 years ago. I got through both surgeries, your dad will as well.

[hopejunkie in reply to Feelingblessed2013]

Thank you for sharing your experience, Katherine. 🙏🙏

[JRuthI1946 in reply to hopejunkie]

Dear Hope junkie The fact that surgery is being considered is a good thing. I certainly understand your anxiety .

The Dr's must consider his overall heath. They may also feel that surgery will give him a curè. I had surgery( left upper lobectomy) through a thoroscopy. They were able to take out a whole lobe through the scope. The marvels of medicine. I was in my 60's and the recovery was much easier than I expected. The chest tube was taken out before I left the hospital. MY biggest complaint was wearing a bra. Your dad won't have to think about that.

I don't know your Dad's overall physical condition ; however, I am now 76 and gratefull for the option of surgery.

You may want to check with your own physician on how best to handle your anxiety. I am thinking of you staying steady so your dad will also.

Think about how many people have open heart surgery in their 70's and 80's.

Good luck to you both. He is fortunate to have you by his side.

[hopejunkie in reply to JRuthI1946]

Dear JRuth: Thank you for your reply and you're absolutely right. We feel very fortunate for that option although it remains scary. My dad is 77 but in relatively good health. I know what Dr. will say about my anxiety. I started doing a lot of walking to help clear the head, but as luck would have it, I just fractured my ankle so now I'm on crutches and will need to be off of my foot for 6-12 weeks. Thank you for your kind words. I wish you continued good health and best wishes. Aimee

[Denzie Moderator Volunteer]

This link will connect you to the European Lung Cancer Foundation. It can be translated into 11 different languages. Maybe one of them can help your dad.

europeanlunginfo.org/lung-c...

[hopejunkie in reply to Denzie]

Hi Denzie: So thoughtful of you to follow up with this link!🙏❤️ I just clicked on it and realized that the 11 languages doesn't include Chinese. What a bummer. I'll keep searching tho. Thank you, again!! Stay well!😊🙏

[etpd2226 in reply to hopejunkie]

amazon has several children’s books about understanding cancer and dealing with a loved one who has cancer.

[JanetteR57 in reply to hopejunkie]

It's the European Lung foundation so they tend to only translate into European languages but even in the UK, I refer medics/nurses to it as we have many patients from Europe and most cancer information isn't readily available in their languages.... there are lung cancer foundations all over the world so there may well be one in China or SE Asia more generally where information might be available in Cantonese or Mandarin...

[etpd2226]

Hi so much great advice. Anxiety is fear of what if. Most of our fears are what could happen, not what is happening. Fearful thoughts will arise for all of us. Try not to entertain negative thoughts. Add positive thoughts by naming five things every day you are grateful for. Gratitude changes our mindset. All of this is easier said then done but possible. Don’t do any cancer 24/7. It will bring you down.

Bring your child to help you sometime. Kids like to be involved. They can read to your dad, get him a drink or food, do a puzzle together. Children want to be involved. Their imaginations are often worse then the truth. Be honest with them. There are great books about cancer for children that are really helpful.

Best of luck❤️🙏

[hopejunkie in reply to etpd2226]

Thank you for replying and sharing your thoughts, etpd! I hear your suggestion of "not doing cancer 24/7." I've been particularly challenged with that since I feel like there' so much to learn, to know and you want to be able to discuss treatment options intelligently and ask for resources... But I hear you. I try to do my gratitude list whenever I remember. I've searched on Amazon for children's books on cancer. If you have any suggestions, that'd be great too. Sending you good wishes!❤️🙏

[Denzie Moderator Volunteer]

Here are a couple of Chinese language resources that G2 Foundation has created.

One of them may help.

vimeo.com/380538291

go2foundation.org/wp-conten...

[hopejunkie in reply to Denzie]

The Go2 Foundation has been amazing. They have Bonnie's Lung Ca 101 book translated into Chinese which my father has found *so* helpful. And they even add subtitles to recent talks with the doctors they interview. Thank you for the suggestion, Denzie!🙏💕

[JanetteR57]

As others have said, important not to let it dominate yours, his and everyone else's waking moments or those where they should be asleep. Don't know what type of lung cancer he has but Medikidz did some great books for children with Roy Castle lung cancer foundation/pharma company some years ago on non small lung cancer and then new targeted agents in 2015….amazon.co.uk/Medikidz-Expla... -Amazon still shows a range of their publications on many conditions including cancers and treatments… amazon.co.uk/s?k=medikidz&q...

Medikidz is an international charity who use comic book figures to explain no end of conditions whether a child has it or explaining what might be happening to relatives/loved ones. their official website' on wikipedia took me to Jumo Health jumohealth.com/storefront so appears to have been taken over.

A newer booklet on chemotherapy on there ….and a London Office. jumohealth.com/news/new-lea...

Regarding your dad's thoracotomy - mine was in Dec 2010 upper left lobe and 7cm tumour removed - I was back at work and swimming by the end of March 2011. They wouldn't suggest surgery if they didn't think he was 'up to it' and loads of hints/tips on milestones, surgery itself, recovery etc in this Roy Castle lung cancer foundation booklet updated last year just before the pandemic... good luck. roycastle.org/app/uploads/2...

[hopejunkie in reply to JanetteR57]

Dear Janette: Thank you for sharing your surgery experience and tumor size. AMAZING that you were swimming in 3 months!💕I appreciate you sending the RoyCastle link - good info especially prepping for surgery. Yes, I'm trying to not be consumed with reading about lung cancer every waking moment I have. Because my father cannot advocate for himself, I feel that it's up to me to do so. And sadly, this has had an impact on my own family... So appreciate the reminders! 😊I've looked into MediKidz and while it looks like a great comic book and appropriate for my little one, I can't seem to find it available in the US. And the Jumo site doesn't have a book for lung cancer. But I'll keep looking! Thank you again for reaching out and sharing! Best wishes to you for continued good health.❤️🙏🙏

[JanetteR57]

Thank you. It's really important to be as active as possible to prepare for surgery and after to aid recovery. Admittedly I was a regular swimmer prior to surgery - 130 lengths several times a week as it helps my physical and mental health. Emergency admission and misdiagnosis as uncontrolled asthma (that I hadn't had in years) despite chest x-ray showing a lesion on my left lung meant doctors told me to avoid damp, humidity and not swim from the mid Oct but when I saw the surgeon end of November and asked how I could get fit for surgery, he asked what I usually did and when I said 'swim', he said 'carry on'. I swam the night before and the morning of surgery then didn't swim again until 31/3. I'd seen the surgeon on 30/3 for follow up and he'd asked how the swimming was going so when I told him I hadn't been he was visibly shocked and said the muscles would have redeveloped better if I'd got moving about sooner! That first visit was painful but little by little I rebuilt my distance so that by the time I saw him in the June I was back to my 130 lengths. I went onto swim much further consistently over years than I ever had before - working up to 360 lengths in one session (over 5 hours) and 989 miles in a year! He asked if he could quote me to other patients and I said it might intimidate people given my previous regular distances but having read articles of those who climbed mountains and ran marathons after lung surgery I appreciate that stories can inspire others. He'd told in the January that my recovery was up to me and the more active I could be post surgery, the quicker the remaining lung would develop - like a balloon - it could grow (it would never fill the space entirely) but with a thinner surface - but if I wasn't active, it could remain like a deflated balloon... his comments on that first appointment post surgery felt very empowering as if I could have a real role in my recovery... walking was what I did to start with, also given an incentivising spirometer and physio/shoulder exercises building it up slowly. I think consistency is the key - little and often better than massive efforts then being floored for days - he will find his own level after surgery of what is manageable and what might require him to rest up more. We're all different but important not to lie/sit around all the time as no good for the lungs that will need 'clearing' and moving about helps that. I was surprised to learn that in the 1950s and 1960s patients would often have an entire lung removed due to TB and live normally - I'd had no idea.... I've continued to work and travel and resumed travelling internationally long haul in 2016. good luck to you and your family...

[hopejunkie in reply to JanetteR57]

Hi again, Janette: Thank you for sharing more details of your journey, especially tips for recovery. I've reread your post many times to remind me and my father that miracles can happen. You remain truly amazing. We can pray to have the hope and be blessed with being able to beat the odds. Sending you best wishes of continued good health and with lot of time in the water. Big hugs, Aimee ❤️🙏

[JanetteR57]

Glad it helped - there are many survivors of lung cancer surgery out there - I met some who were 20+ years out - on all types of treatment except the newer immunotherapy and targeted agents that have only come on the scene in the last 6-7 years and people who respond doing well. Surgery remains the key curative intent treatment and SABR(a type of radiotherapy) often suggested for older patients (in their 80s and 90s) if they're unable to tolerate surgery but I also know thoracic surgeons who operate on patients of such ages - physical fitness of the patient is more important for surgery as well as the site/stage of the tumour rather than the chronological age. good luck to you and your family...