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The Neverending Waiting

Just a vent/ask for advice. Steven had a consult with a new oncologist today and we waited 1 hour and 45 minutes in a tiny room for the Dr to show up. Steven was already unbelievable stressed at being back in the hospital to talk about more radiation and he’s still in quite a dark place with the biopsy results. He’s trying to work through the anger with the mental health professionals and I know he’ll get there. But for now the fuse is very, very short. He was incredibly upset and had words with the Dr when he finally entered the room, to the point he almost left. No one came in while we were waiting to apologize or let us know we hadn’t been forgotten. Not a single word. I know they’re busy but honestly I sometimes feel they completely forget the impact these appointments have on their patients. I noted (quite tersely I admit) to one of the nurses that I would never show up 1 hour and 45 minutes late to a meeting and she replied this is not an office it is a cancer hospital. Really, my husband who has been told there is no more treatment for his cancer doesn’t know we’re in a cancer hospital!!! How do you go about keeping your loved ones calm when they’re already riled up while undergoing unexpectedly long waits? I obviously failed miserably today.

36 Replies
Brighty
7483 Posts

@NickytheCanuck please don't blame yourself. It's just a crappy situation all around. I'm so sorry the doctor and nurse were so insensitive. Never think that you failed. I'm glad that your husband is talking with someone. Are you as well? Some ideas to do while you wait………… You can make plans for the two of you maybe to do some fun things together , ( doesn't have to be anything exotic, just a movie night or a walk together) make him laugh maybe…………show him funny videos on your phone while you wait………..talk about normal every day things like the hockey game, or something he is interested in…………bring some magazines to look at………tell funny stories about work, just anything to keep his mind distracted from what is happening if that's possible. It if isn't, that's ok. Just the fact that you are there, just sitting with him and being there makes you the total opposite of a failure!!!!!!!!!!!!!!

We are both getting lots of help and have just reached out for couples grief counseling. Thanks for taking the time, some good ideas 💕

Brighty
7483 Posts

I'm so glad you are both getting help. Grief councilling also helped me @NickytheCanuck . Anticipatory grief is very real so glad you are starting the process now. Do you find it helpful?

The anticipatory grief is real! We are just transitioning to this type of therapy as I very much recognize that we are both drowning in grief and need help in learning to cope.

Brighty
7483 Posts

I'm so very sorry you are going through this @NickytheCanuck . But I'm so glad you are getting help. II was in so much denial when I was in the situation, half the time I pretended it wasn't happening. Deep down I knew what was happening but could never admit to myself. My friends and family all knew where this was headed but instead of admitying it,I would lash out at them for daring to be so negative. Burying my head in tbe sand wasn't going to change the outcome. So I'm glad you are dealing with things now and talking things through with someone. Let me know how it helping . Have a great night .I'll check in with you tomorrow.

ACH2015
2147 Posts

@NickytheCanuck

Venting is healthy, and a way to get rid of many emotions - including pent up anger and stress. No excuses about what happened, I found and find my emotions and thoughts go from one end to the other when similar situations have occurred with me. Get those concerns and feelings out - as need.

I've often thought there should be sound proof rooms we can go in at hospitals when the frustration builds up. Allow us to scream / yell / throw a plate on the floor to release these emotions and eventually just take that much needed breath, cry and move forward again.

We are people, and patients and caregivers. Sometimes we are treated as just numbers, and it is difficult to wrap our heads around that. Keep moving forward and vent as necessary.

Keep well

ACH2015

DSJ
18 Posts

I think we all go through this experience on a regular basis. Many years ago I got the very first slot of the day on the doctor's appointment and found myself waiting for over 45 minutes. I could hear the doctor speaking with another man who had just been diagnosed with cancer and he was crying.

We never know what the doctor was just dealing with before coming to speak with us. Maybe they just told someone they have less than a few months to live. Maybe the doctor is also very upset about having to give this news. Maybe one of the doctor's patients just passed away. We don't know what burden they are carrying. Same for all of those around us. Let's practice kindness and maybe it will become infectious.

After being diagnosed and treated for cancer I've decided life is too short to being easily upset and try to give people as much patience as I can, as hard as that is at times. On other support groups there is a belief among many that getting angry only feeds the cancer. There is some research that supports this belief.

I see other people in waiting rooms who bring books to read because they know it can be a long wait. Please consider what others are going through because I am sure there are many others who are suffering just as bad or worse than what you are experiencing.

robegree71
71 Posts

Been there done that more than once ! I was diagnosed with lung cancer Feb/20. Retired in Mexico and with Covid in Canada any kind of treatment plan was impossible to get back there. I was Stage 1 so opted for surgery here. I was pretty ignorant of treatments but knew I didn’t want chemo or radiation so had the OLD style surgery, not VATS, where I was cut from mid back to under my armpit! 3 days in the hospital became 10, can’t count the number of drugs they tried, lost 40 lbs. No insurance!

I am a big man and never feared much of anything. This scared the hell out of me and still does. I beat myself up for not looking after myself better, always wondering what I did to get this, etc. It never leaves you so letting it out is OK ! I abused my Doctor, friends, family and wife verbally and they are all still here.

It is a terrifying situation for both of you so give yourselves a break. It isn’t the real you and people will realize that. Use your energy to focus on the things that will help you now ! It gets better with time, it does ! Use those resources that are available and try to focus on the help you are getting. You don’t need to apologize, it is an insidious disease and given the medical system in Canada now it can be overwhelming.

Good luck, sounds like you’re doing the right things so keep going.

Trillium
1568 Posts

Oh @NickytheCanuck it must be so hard for you both to go through this all again. Having some professional help with dealing with all of the emotions is a really good strategy. Don’t beat yourselves up for what has already past.

Don’t take doctors being late for appointments personally is one thing I can think of as a suggestion. I remember when we were in our first chemo treatment and a nurse was trying to get a response from another patient and was not able to wake him up. Other nurses came to help and finally the Dr arrived and they spent 45 mts reviving this man. This was the beginning of covid and no caregivers were there except for me with my son.
This poor man lived alone so they also had to then figure out supports for him before sending him home after chemo.

This likely meant that the dr was late for the rest of her patients the remainder of the day. This is what doctors are dealing with on a daily basis.

Some things that have helped me:

Taking a slow deep breath in and releasing it slower. Do this a number of times and it will slow down your nervous system immediately.

Don't take it personally - imagine what the dr is dealing with during the time you are waiting for her/him. Think of something funny too.

Bring a book, magazine or buy the daily newspaper on your way and prepare for the Dr being late.

Watch a movie on netflix or youtube on a small tablet by sharing one of the ear buds.

Teach hubby to knit 🧶 Haha! Many men do knit and find it meditative too.

Can you think of more?

Warm hugs for you both during this very difficult time.

Trillium

JanW3
13 Posts

My message just left me

Funny enough I’ve just started teaching Steven to crochet so he can keep his hands busy while we wait. I recognize it was a very high stress week and there will be bad days but they are followed my lots of good ones. Steven is still healing from his surgery and unfortunately there is another suspected melanoma tumor and we are just awaiting the biopsy appointment. Glad to close the door on the week and start anew. Making plans and enjoying the fall weather one day at a time.

@robegree71 Thanks for the understanding and the kind words 💕. I envy you the warm beaches but the fall colors are just starting to bloom here. Enjoy the sunshine and sending you healing thoughts 🍁🍄🍂

@DSJ please don’t think this one bad day is representative of normal our behaviour over the past several years. We too are always kind and patient with everyone around us and have waited at this point hundreds of hours for treatments, Drs, tests, meetings etc. We always try to remain positive and oftentimes try to comfort those around us. We see so many people in waiting rooms on their own and try to share kindness to help them pass the time. Unfortunately it was just one really bad day on top of some very difficult news around the outcome of his post surgical biopsy and further potential tumors all while Steven is struggling to get on top of all this emotionally. I have been the recipient of most of his anger and that’s been a difficult adjustment. In the almost 40 years I have known him he is the softest soul I have ever had the pleasure to spend time with. I have received some wonderful ideas to help and Steven is working with his therapist to deal with his anger at the situation he is in. We are doing all we can to get him the help he needs. I guess I just also felt it was important to be vulnerable in this safe space and share a really bad day and seek guidance. And that’s what it was just one really bad day.

supersu
499 Posts

@NickytheCanuck


thank you…I always say that for every forum entry there are others in our community who are experiencing the same thoughts/issues - so your post will undoubtedly help others.

I can certainly relate to the anger that your hubby had. waiting drives me NUTZO…even BBC (before breast cancer)! but now….my fuse is super short so I total ‘get’ both of you being frustrated with the wait and the lack of communication from the staff! yep - that would frost my flakes too.
my motto: if you're not 15 minutes early, you're late! ha ha ha

but what stood out to me most in your post, was the very last sentence where you say you ‘failed miserably’.
oh my goodness!!! NO NO NO
please do not even go ‘there’.

as a kind, compassionate, reliable, loving, concerned, committed spouse caregiver you deserve to give yourself a break. please do not take this on as something you are responsible for. his behaviour is his responsibility, as is yours.

I am glad to hear that you are both getting help for this situation.
bad days are OK- as long as we move forward from them, and bad days don't turn into bad weeks/months etc.

I hope you two are having some better days and can enjoy a pleasant weekend. get yourselves some nature Rx and let us know how things move along for you both.

cheers
su

#endstagecancer #spousecaregiver #waitingistorture

Trillium
1568 Posts

@NickytheCanuck - sorry to hear that there is another biopsy that brings you both so much fear and worry. Thank you for sharing because we all are learning how to cope as we live through this.

My (bad) neighbour caught the brunt of my anger but he was an idiot and deserved it lol. I always feel so embarrassed when I lose my self control. Thank goodness they moved! The last thing we need is one more person making our lives unpleasant.

Taking a medication for mood is what has helped me because for me life had become just too hard even before the cancer. I continue to search for tools to add to my self care kit. It’s ok to not be ok.

How is the healing from surgery? Only if you feel up to answering. I don‘t remember if you told us already.

Hope you are getting some good self care too.

Warm hugs

Trillium


@supersu a heart felt thank you ❤️

@Trillium he’s on the mend. The incision from his waist to armpit is almost completely healed up and his skin flap on the face is healing nicely. He’s still quite swollen but the pain clinic Drs are doing an amazing job balancing the pain pills/nerve blockers to keep him comfortable. He has been taking an low dose antidepressant since his initial diagnosis and has recently upped the dosage which should help. It’s a beautiful sunny day here and will be spent with friends enjoying great food and warm temps. Thanks for everyones kind words you’ve all helped this caregiver immensely ❤️❤️❤️

Trillium
1568 Posts

@NickytheCanuck - Good to hear he is healing and not in pain! I was able to increase my antidepressant and also use Ativan for my bad days when my son was diagnosed with testicular cancer. I hope you get some reprieve from stress by enjoying the Fall outside and eating good food with friends. Thanks for being here with us.

Yourgues7
4 Posts

@NickytheCanuck My heart goes out to you as my daughter felt the same when she watched me treated the same and have reactions uncharacteristic of our former selves..she just loved me ..bought me my favorite things..got warm blankets and didn't try to understand or fix everything..thank you for sharing..my thoughts are with you both

robegree71
71 Posts

@NickytheCanuck

I really miss the fall back home ! It was time to go Salmon fishing in the rivers, enjoying the colours while walking the water. Nice cool sleeping at night, no AC going.

Sounds like a good idea to get out for a walk and let that other stuff go. Winters are great here because I can’t ski anymore and don’t miss the cold but really miss the fall. Keep on the road you started sounds like a good plan. You might want to try some type of meditation for both of you. It has really helped me to relax and let the anger go more. Took me awhile to get into doing it and finding something I liked but it does work. Even for an old jock like me.

DSJ
18 Posts

I get it. I too have some serious anger for similar reasons as your husband. Not going into details here but I understand. This beast is hard to fight. Take care.

@robegree71 I’ll be sure to send you some fall photos to share the colors with you. Would appreciate it if you could forward some meditation suggestions, sounds like a great idea. Take care 🙏🏻

law1
584 Posts

Hello @NickytheCanuck and I feel for your frustration, your husband's anger, and generally the anxiety of waiting, re-prescribing treatments, and generally hating everything!! You are both lovely people thru all of this shi**y point in your lives, and the cancer staff understands your moods….although they too, are over-wrought with emotion from overwork and frustrations.

I recall vindictively yelling at a well-meaning social worker, “you all are lying. You are not at all helpful” She kept her cool and just kept talking in a soothing manner. Another counsellor visited me in the Emerg and I had no recollection of who she was….and demandingly asked her, “Who are you?” OMG--- when I recalled how supportive she was, I was so embarrassed, while she took it all in stride.

You and your husband are in a very stressful place. Cancer sucks. Yet, it is great you still have the motivation to write on this site….keep it up!!

@law1 thank you, thank you, thank you 💕

law1
584 Posts

Hi @NickytheCanuck and thanks for replying so quickly and graciously. You and your hubby seem really on top of learning about melanoma….and reactions from treatments. Bravo for making sure your husband is taking the pain meds, as when the pain becomes unbearable, the meds cannot catch up in time….so it's crucial to take them per doctor's instructions. It seems quite positive that the surgery is healing and his pain is manageable. Did you both get outside today with your friends? A loving support system is vital and you need to take care of yourself, too!! Covid creates difficulties, but perhaps you can set up a schedule with friends to assist you and/ or your husband with frequent check-ins, grocery shopping, laundry, streaming video programs….etc. And, you may want to use counselors at your Cancer Centre who can assist with coping mechanisms for both of you. There is also a toll-free number for the Canadian Cancer Society staffed with all modes of supportive people who are well-versed in oncology, healing, depression, and all cancers and its lifestyles. It's toll-free: 1-888-939-3333.

Virtual hugs to both of you

@law1 we’ve got lots of wonderful folks helping but also recognize that specialized / targeted help is necessary. Will call first thing tomorrow morning. We recognize that so many here walk this path with us and we are open to all the heartfelt advice and guidance and are soaking up and implementing as much as we can.

S2020
585 Posts

Hi @NickytheCanuck

I was thinking about you and your husband, and remembered that you expressed an interest in meditation. I have found the meditations at the following link very helpful:

Jon Kabat Zinn’s meditations on YouTube are also very helpful.

I hope between the two sites, you find something useful. We are here for you, too.

@S2020 thanks so much and have a wonderful Thanksgiving 🍂🍁🍄

robegree71
71 Posts

Did you get the name of the site I sent you ?

I agree 100% as I too have been treated like a number in cancer care instead of a human with issues , that frankly if another oncologists shrugs his or her shoulders at me and say we have no idea what's wrong with you.. I'm going to tell health system to kiss off…

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