I had a heated argument with my eldest son in the weekend. We were both swearing at each other in a way we've never done before (we're very well-behaved usually). He's furious with me for sitting back and waiting and worrying about my enlarged lymph node ultrasound. He doesn't know a lot about OC because for much of my struggle he's been in the UK. He was with me when I saw the ENT and didn't realise how significant an ordered ultrasound is even if the doctor says they're probably reactive. He thought I was shaken because the ENT said, when he asked her about my prognosis, that they need to keep a very, very close watch on me because I've had OC three times. I knew that, although she said it VERY emphatically. Anyway, when son clicked that I was on tenterhooks about the nodes (can still feel one) he tried to push me to email the hospital right away. I demurred and that set him right off - he emailed the specialist nurse - wants to know more and have the scan earlier - but I always just go with the flow and fret away at home. "I've had this for (swear word) 10 years with you, Mum!"
I feel regretful that none of my sons have learnt about oral cancer but I've never asked them to. My husband didn't either when he was with me. Those of you who have knowledgeable caregivers are very fortunate. My sons have such busy lives of their own that I can't really expect them to do the research. They ARE capable of telling me to pull my head in and be proactive with treatment but it would be better coming from a base of knowledge. Because I take different people with me for important appointments, no one person knows anything very much. I yelled at son, "What do you know about it, nothing!!" But in the end there were tears and reconciliation ... and lots of sympathy.
Do any of you have arguments with the younger generation who are less wary of demanding stuff from hospitals? Or is it just my generation of New Zealanders who are reluctant to make a fuss?
You sound very much like me. My kids get mad at me for not running to the doctor for every little thing. I tend to put my health and issues on the back burner. Maybe its from going thru so much that we just cant push ourselves any more to get immediate medical attention. Plus we know these things all take time and wont get figured out overnight anyway so there isnt going to be a difference in a delay of a day or two.
As patients we all understand you very well. Children arent always as tuned in as we fellow patients are. They mean well but usually they arent the best with their communication skills. In their lack of understanding of the disease, they can easily get frustrated.
Im so sorry things have been rough at home for you!!!! Im sure its only temporary. Bottom line... be well and take good care of yourself.
Thanks, Christine. Wise words from you are always welcome!
For all the reasons mentioned, adult children may not have the base of knowledge that fellow patients have, but I do suspect that they are speaking and reacting from a base of love and caring and wanting to keep you both around for a long time to come.
Oh dear. I have always tried to protect our 3 sons from all this OC stuff. We have never discussed " having cancer" or it's implications for the future. Yes, they are busy. They are also young and I don't want their early adulthood to be "blighted" by this. I want them out enjoying their lives. I don't want them worrying about us. In some ways, I think we keep them in the dark.
Our health system here in NZ is very different to that of the USA. We "wait" for appointments. It is hard to rock the boat. I guess that I am a bit luckier in that I work in our health system and have always been able to either phone our ENT myself , or get one of my Medical colleagues to push for me. I do this when I am desperate really, because it is just not the done thing. However, I always advise others who are worried to advocate for themselves, to ring the clinic, phone the Nurse Specialist etc. I think your Son did the right thing emailing the Nurse specialist. I think that is part of her job , to be the liaison person for you. I do also understand your reluctance Maureen.
I'm glad that you were able to "talk " about this and both acknowledge your worries. He loves you .
So hoping your appointment is moved up and your worries are allayed soonest.
Take care,
Tammy
It's good for kids to be made aware, it is good for people not to hide things from their kids - I am not saying scare them with the gory details but do make them aware of the basics. I know we all want our children to have joy and not ruin their formative/young adult years, however I am not sure we are doing them any favors. Some knowledge is a good thing. This way they have some understanding of what you are going through and are able to come to terms with it. It also makes them more readily able to handle similar situations later in life. All of my kids were kept up to date on what was going on with my health I didn't sugar coat it, I told them the truth but at the same times I softened it somewhat - I let them see me when I was at my worst, but also told them that it was going to be a temporary situation, though they knew there was no guarantee as cancer - like life is unpredictable. Hiding stuff from kids and keeping secrets (my sister in law did this when my father in law was sick) makes them not trust you in the future.
Provide the information, let them know you are there if they want to discuss it. Two of my three children handled my dad's last few month amazingly well. My middle child struggled with visiting regularly but came the day he passed.
It's not easy - but life isn't always easy- and if all you show them are rainbows and unicorns, they never learn to deal with the bad stuff. I know your son (s) are older and have their own lives, but they should still be made aware. Otherwise, if something does happen down the road, they will be kicking themselves and have regret over not doing more, or being more aware. hugs.
Thanks for sharing your story as we all have to interact with close friends and family to some degree during the diagnosis, treatment, and post tx phases.
Your kids, I assume, are grown adults so should be fully aware of what you have and are experiencing. Mothers always want to protect your kids but my feeling is full disclosure offers the best way to protect them.
Cancer clearly is partially passed along in the gene pool so making your kids very clear eyed about the potential increased risks to them is a very good thing, even if it scares the crap out of them. You only hope they are fully aware and take measures to ensure they advocate and inform all their providers about cancer in the family in order to make sure all providers take a close and second look over potential signs of cancer.
My own experience did not go smoothly with my family. My youngest was a junior in high school, my daughter was in college. My wife and kids all wanted to cower up and hide. No different than many here who rather close their eyes than stare the oncoming train head on.
Being of the later personality, "come on, let's get it on!", I personally got totally involved in all things cancer to best arm myself for the battles.
Looking beyond my own self interest, I wanted to use my experience to help as many others as possible. Make the most folks aware of oral cancer and all the details of each and every skirmish and battle.
I did two things. My cancer is HPV p16+ so the first I did was create an email list of nearly every person I knew (excluding business associations) and informed them about oral cancer and supported and urged everyone to have their kids get the HPV vaccinations or tell anyone they knew who had kids to get it. I figured if a single child was able to avoid getting this cancer it was worth the personal issues I and my family were suffering. I did get emails from parents who were on the fence and they were convinced to get the series for their kids!
Second thing was I created a detailed and daily blog of the entire experience, from initial visit through recovery. I post an update once in awhile just to keep the story complete. Never know what the future holds. Many members here at OCF and CSN have signed up and read the details. For those like me that seek the knowledge and feel more empowered then this is detailed journal provides pretty unique insight into what to generally expect.
Looking back, I feel great about those decisions. I have had a single thought of self doubt and know I have only helped people make the decision to get their kids vaccinated and provided the on the ground, on the battlefield experiences for those facing the disease.
In Alpaca's and others cases where there was less than full sharing of the entire experience(s), one might feel more encouraged to be more proactive to share one's experience with the view it may be difficult but offers more benefit than keeping things close.
I am not advocating keeping secrets at all. All 3 of our sons came home when Kris was diagnosed. 1 son flying back from London. We spent a week " in camp " together. We talked about HPV lots. We talked about the implications of the diagnosis and what the treatment involved. All 3 came at various times and stayed with us a night or 2 during rads and chemo. Likewise when Kris had his recurrence and salvage surgery . These boys were with me during the surgery. They drove to Auckland every weekend and stayed with me in the lodge the 4 weekends Kris spent in Auckland hospital. For the next 3 months they kept turning up further North at home in Whangarei. Sometimes ( in dismay - due to the mess always involved )I saw their vehicles arriving and thought why they home again? Oh yes, they are coming to see their Dad.
However we try to let them live their lives. Our closest child lives a 4 hour drive away. They do not need to know the minutiae of our daily lives. They know about every checkup. They know Kris has a daily struggle with food/drink and speech. They also are aware of how well he copes. They know me to be a coping mother and strong woman. They know that should things go to cactus they would be the first to know. But it doesn't consume our life or theirs.
When Kris developed the ulcer on his flap earlier this year, I didn't feel the need to mention it. It turned out to be nothing, just an ulcer. They do know now and that this is what lead to our health system giving him a dental plate and teeth.
I don't think that this is about keeping our kids in the dark, absolutely not. But I do not feel they should be unnecessarily burdened with worry either.
Tammy
Hi Tammy,
I did not intend to convey that you were hiding anything, maybe it came across that way. I responded in general that there is wide range of what gets shared and I feel it is better to be more open rather than sharing less or nothing. Sorry if you felt it was personal. It was not.
All good Don. I so agree with you, honesty and openness Is definitely the best. I am a very open and honest person.
Sometimes I share too much!
Tammy
An interesting discussion. Thanks everyone. I agree that openness is the way to go but there are several complicating factors. As a family our lives were turned upside down when I was diagnosed with Stage IIIc ovarian cancer in 1996 when I was 49 and my youngest son 14. It took a long time for the diagnosis to be sorted out and things were very bad initially with an unknown primary and poor prognosis. My kids were going through their adolescent angst and we'd never been open as a family. My husband and I both found it hard to talk about such things so we protected the younger two boys while taking the eldest more into our confidence. That pattern continued through two more cancer episodes and the HORRIBLE process of my husband being diagnosed with dementia in his early 70s. Youngest lives in the UK (but came home for 6 weeks to look after me in Feb), middle avoids his Dad and the eldest visits him dutifully. To make matters more complex, I have bounced back strongly from each cancer episode (so far). After a few months of floundering, they see me pounding the pavements, digging the garden, arguing about politics and generally being the same old Mum. The two younger lads are still not fully aware of what I continue to go through while the eldest takes it upon himself to be the stalwart. Part of me wishes he'd go the whole hog and read the pages about OC on this website but I'm too scared to suggest it and really why should he?
The other two have shown plenty of devotion but only at times when the situation flares up:)
When I have a scare my first or second thought is for the boys and how it's going to affect them, especially my middle one who is devastated about his father. When he got married in March, I was only JUST able to attend and his father is so far gone he could not.
Have just read over what I've written and recognise that my "thinking" is a bit flawed, predicated on the false premise that adults in their 30s can't handle what I can, but heck, it's hard to deal with.
Alpaca - Everybody is different and you know your own children and can probably predict their reactions better than anyone, but if you would like your eldest to see some of the information about OC, why not select something not too long that you want him to see, print it out . . maybe even hilite some things and then leave it "accidentally" where he just might see it next time he's at your house. It might catch his eye and if he really cannot bear to look at it, he will put it down. Or he might find it very helpful. That way it's his choice. If you are busy elsewhere it might be easier for him to take a look. Just a thought. It is a difficult situation and maybe you could use another "stalwart" person in your corner.
Thank you Anne-Marie. I'm going to try something like that.
Update on waiting for ultrasound. I spoke to the surgeon who said it there is only a tiny chance that there is cancer in the node, the one that became enlarged when I had a gum/tooth infection. She can't get me in until 27 November for ultrasound and FNA, although she is trying to bring it forward. It's a hell of a long time to wait - from 15 October to 27 November but I feel reassured now I have spoken to her. I've had this before and had a similar wait ... Horrible thing to do to a cancer patient but I've become better at waiting. I've sort of got over that ghastly knot in the stomach and just feel "in the moment". It's different for me I think because I've had cancer four times and feel my luck has to run out at some stage. But I don't think it has yet.
Alpaca, I'm truly sorry for the anxiety you are experiencing. I would agree, there's not much worse for us. The time between discovering and proving/disproving things seems like the slowest time passes, too. We just seem to find ways to keep calm, in most cases. In others, some of us turn to anxiety meds.
When I go through extended periods of being unable to breathe, it feels like I will die any second. I even fear sleeping because I have to consciously make myself breathe and I feel like I will drift off and not wake up. This has been going on for 2 years in December. I look back in amazement that I have endured this for so long but also to remind myself that I am doing fine. I have gone almost a full year with no anxiety meds, too, which surprises me more.
Find ways to occupy your mind and the time will fly by. I use cooking, gardening and politics, too, although the politics part doesn't bode well for relaxation. Hang in there and I am certainly hoping for the best possible outcome on your FNA.
Thank you belatedly Uptown. Now many weeks later I have had my ultrasound. There was no node worth taking a biopsy of. "Nothing bad happening here." Some fatty tissue etc. I was so relieved as was the friend who accompanied me. For the expected FNA there was a big group of medical people so after the good news I told them to all go and have a cup of coffee.
I could bemoan the fact that I had to wait so long to get this reassurance but in fact the wait made me face a lot of the issues that are going to affect me from now on as a person who has had three primaries and has used up some of her nine lives. I think I'm getting better at living in the present:)
Must have been a relief to hear that there was nothing to biopsy Maureen. Like Tammy says .....great!
Gabriele
So happy to hear your good news! The waiting is the worst. It takes a lot of practice to keep the mind and the body occupied, and to try and keep out all the chatter that fills the head with the "what ifs" and other negative stuff. The more I hang out here, the more I learn how important is the "now".
Wonderful news, Maureen!!!
Wonderful New!
Thought you might find this interesting. I am 40 and the care giver of my husband Stephen who is 62 so we are soul mates unaffected by the generational gap. When my husband was diagnosed just over a year ago, I went into turbo mode for the first month. Its all a blur now but I educated myself and called every specialist in our family and followed their advice to advocate on Stephen's behalf.
Looking back now I know I accomplished little but those little things like faxes to different specialists had to be confirmed so that we could wait a month plus three weeks knowing everything was set to go.
What I learnt is that Cancer related treatments, healing and results go at a certain pace. At one point after Stephen surgery I became too informed about every minute part of oral cancer. It was too the point that I read medical artical upon medical artical, to compare differente studies. Yes, you guessed it, I was looking for hope. It wasn't going to be found in any medical document, that's for sure. I told my family doctor what intense hell I was putting myself through. She said this very bluntly to me. "Its Stephen's right to live fully and who are you to not share his hope". And tadaa, that was it, my three weeks of downward spiral stopped dead in its track!
I made a decision, no a leap of faith to be his best friend and lover again and cheer him on. I haven't looked back and I no longer panic. If there is a problem like the infection that took hold, we don't second guess, we go to the emergency and they take care of it. And just this week Stephen got his first scan since the surgery and we talk about what's on his mind but that is our daily ritual.
I am so grateful that Stephen let me go crazy even though I exhausted myself the first month of his diagnosis. And now, if ever he has a concern, he just asks me what I think. It seams that every day is a search for a new normal, but I guess that's what living in the present to the best of our ability feels like.
As far as generational gap, I must say my initial manic aproach really did not make any sense to Stephen's mom. Which looking back, I understand now, but then, with a stage IV diagnosis and no clue about oral cancer I felt like it was do or die.
So information for the purpose of general understanding is always good. And in time all the confusion that a young adult might go through will find a resolve. Love is the greatest sense maker in all situations. I teach Art & Health and I consider myself fortunate to be embraced and trusted by so many young children. It is an honor to be their teacher and in my way of caring I hope they grow to be true and confidant. I have known children who themselves have faced the great battle and who are so calm and loving. Chidren, and young adults might take what feels like an eternity to process life challenges but it is our solide commitment and belief in them that set their sails high and mighty.
That's the great thing about love, it is free and unconditional and it is with you always.
Thank you for sharing intimate parts of your life, Sophie
Please ignore the spelling! I'm home sick and didn't feel like being perfect today. Even as a teacher
Sophie