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Papillary Cancer in a Covid world is ...
Al2248
3 Posts
Hi,
Hospital found a large lump on my throat during a complicated Pneumonia / cellulitis stay in March 2020. Biopsy in July, read cancer diagnosis online, and Thyroidectomy and Neck dissection in a Day surgery in Dec 2020. Now waiting for RAI treatment in the next 4-6 weeks. Looking for any support and guidance. Feeling disconnected as our family and friends are out East and it's just him, our dog, few friends here for me. Virtual everything makes it feel surreal. Thankfully my surgeon was fantastic and my endo seems very kind and knowledgeable. Thanks for this discussion group.
9 Replies
Brighty
6286 Posts
Al2248‍ welcome to the site. Sorry you find yourself here. You arent alone. Perhaps TaliaB
debbiedo‍ and Mar123‍ will be able to connect with you.
TaliaB
24 Posts
Hello!
Cancer itself can feel so isolating it would be extra with Covid.
Sounds like everything was handled quickly! I'm glad you feel good about your surgeon. That brought me a lot of relief too.
I also had papillary thyroid cancer, neck dissection and RAI so feel free to connect!
MCoaster
418 Posts
Hi Al2248

Welcome here and thank you for your heartfelt post.

I think that no matter what type of cancer and whether you are the one diagnosed or their care giver everyone here can relate to how you feeling. It is a scary time particularly when you are away from most of those who you care about. There are a number of Out Easten members here. I am looking at the other ocean to-day and for the first time in ages it not raining. It is so good that you have such a supportive surgeon and ends. I can also relate to how empathic a dog is at such times and know that my black lab, Toby, is always close to me.

Brighty‍ has tagged members who have experience with thyroid cancer and I see that TaliaB‍ has already posted. Perhaps although I had breast cancer I can make a few other suggestions which you of course may already know about. If you look at the bottom of the pages here there is a black section with lots of resources. I found that when I was feeling really anxious about what was happening the people on the Cancer Society Help Line (1 888 939 3333) were really supportive and gave many useful suggestions. As a pet person you might want to browse our Pet Group on which Brighty‍ is a very regular contributor. What is your dog called? There are also several other Groups which may interest you.

You are not alone because members of this site are always here to listen and answer and also to learn from each other. It is a safe place to talk about cancer and also to seek and give emotional support as we are only known to each other by our site names and our moderators Lianne_Moderator‍ and Lacey_Moderator‍ also are very supportive.

Do you have a date for your RAI treatment yet?

Healing hugs.

MCoaster








Mar123
6 Posts
Hi Al2248, Good to know you've joined this group. I myself was diagnised with Papillary Thyroid Carcinoma last September. Surgery a month later and RAI several weeks ago. I feel great right now. I have changed some of the ways I do things, ie. I am more aware of my diet and have decided I need to include excercise more often. I do this because my chances of recurrence are 'medium'. THere's low risk, medium risk and high risk. Medium scares me the same as high and if there's anything I can do to prevent, I will do it (or try my hardest!). It is real hard to eliminate sugar from diet (that's my weakness) but I am not doing this cold turkey. I found reading some books on cancer helped as there is always lots of great into to extract. Having a good surgeon and endocronologist is half the battle. I absolutely adore mine and I always remind myself to ASK LOTS OF QUESTIONS because ultimately I AM responsbile for my health. Feel free to post more, I am happy to be of help. Stay strong and positive.
Al2248
3 Posts
Thanks Brighty‍ , TaliaB‍ and MCoaster‍ . You understand the stress of this C word and how not everyone in your life can be as supportive during it. I am very glad my cancer care team have been good and I know the plan with radiation. Having more support is very appreciated. Now that surgery is done, I also feel as if people think I'm over it or its old news and no longer want to hear about it.

I know I'm lucky because my survival rate is fantastic but the quality of life changes with the thyroid, complicated medical history and Covid-19 concerns are very hard to cope with at times. I need to vent. So many symptoms to deal with from my conditions/ the new medication and the specialists only deal with some:
  • The Brain fog is brutal - I feel like an idiot with my job (project manager) and am making more mistakes than normal. I feel like I actually dropped a few IQ points lower. Connecting the dots feels harder.
  • Feeling extreme cold, hard to work up a sweat during a workout even (never been a thing before). I am wearing flannel lined pants working from home and have the thermostat set to 24C and I'm still cold.
  • Fatigue, compounded by not sleeping, have suddenly become a light sleeper and any sounds now wake me up in a panic.
  • Leg cramps with low calcium days.
  • Feeling such anxiety over Covid (also have high Blood pressure and Asthma) and catching it. My cousin (EMT) and his family and my aunt/uncle in the UK caught it. Fortunately, they all are recovered but with some side effects.
  • Feeling anxiety over what symptoms will be life-time and how long it will take to get my meds, right. I see some posts in Thyroid groups saying years.
  • Hormonal roller coaster and moodiness, my poor hubby, he doesn't know how to react, is a fixer type who doesn't handle emotions well, I've been nothing but emotional with everything and we've had many arguments over nothing. (compounded by Uterine Fibroids, told I need a hystorectomy but that is considered elective, so try an implant. Not much improvement there.)
  • Dry eyes, skin and hair falling out (Doc suspects Sjogren's syndrome too, being investigated, as I also have arthritis (a sister-symptom) waiting for that referral). This expected to become worse with Radiation, oh yay! No one wants to treat in the interim.
  • Suffer from Chronic migraines to boot, extra migraine frequency with the added stress of this all.
I am primary bread-winner (Contract Employee) so feeling the financial pressures to work full-time. My oldest sister started kidney dialysis and the other sister had brain surgery in the last 18 months, so feeling guilty for not being able to help them more. So I feel very beaten up and tired. I put on a brave face and keep positive for myself and others, as that is what everyone expects of me, I'm supposed to be the rock. Just feeling the extra pounding of the waves.

I know that medically everything is on track, next steps are coming, RAI is 4 - 6 weeks away, and adjustments to my new medications take time but the waiting is brutal and frustrating. I miss hugs and dinner out with the girls or a road trip to get away, those are my gotos for recharging. Any other suggestions for coping besides meditation, exercise, self care, keeping busy, remembering to take solace in positive thoughts, in the charities and activities I can support, keeping normalcy with zoom chats with some friends, and keeping in the present by playing with the dog? His name is Maddocks, btw. I have not said any of this out loud to anyone. I know others are in worst situations, however, I'm finding it difficult to keep my ground in the storm. Thanks for letting me vent.
law
385 Posts
Al2248
Thank you for writing such a candid and info-packed post-----even tho' it must be a drag to have the reactions you are experiencing.
Brain Fog? so frustrating especially with a job such as yours which requires decisions and quick spinning on a dime!!! I admire your ability to continue working at this time. As a retired print production coordinator, I can relate to the stress.
And---fatigue (naps often help but it seems to be a cancer souvenir for some reason), roller coaster?---- such a perfect description . You may want to speak with a counsellor as with or without prescriptions, there are usually ways to accept the'carnival ride' and it may cut the anxiety.. Treat yourself with rewards for your accomplishments as you kick The Big C out of town!!!
Keep us posted.
law
TaliaB
24 Posts
I am so familiar with so many of the things you talked about.
It was incredibly frustrating how many people assumed I'd be over it and just carry on. And I just stopped talking to most folks about it.

My meds took awhile as well although not more then a few months. I felt slow, dulled and out of it. I still have days I feel useless. (almost 2 years out)
But I often find those related to calcium, magnesium or just needing to take better care of myself.

I'm also possibly permanently disabled from my surgery in my right trapezius muscle and am considered high risk because of how much cancer was in my neck.
Although I may get dropped down in risk level soon!

I get super cranky about this part. The obligation to seem normal and take better care of myself feels exhausting when all I want to do is eat cake and say F it.

Okay so that's where I totally agree with you on all the sucky parts. And really acknowledge how garbage this can all be. Because it's all true. It's a life challenging event. It shifts relationships to ourself and others. And thyroid cancer is so diminished as serious it's infuriating.
And....

Therapy

I waited a long time. I meditated, walked dog, snuggled dog, physio'd, accupunctured, yoga's, journalled and did all the things that truly will help.
But it wasn't enough.
I finally decided to seek out a professional.
And it's been so critical.
Cancer was far from a gift but it did create a forced opportunity that I am trying to embrace.
She's had me looking at the grief, the medical trauma, the loss of connection to people and all of this in a way that I have actually healed a lot.
And at times I have been able to find something amazing that came from this.
My creativity has skyrocketed.
I have more empathy and I value small moments so much more.
I've used the anger at relationships to change them into what I need.
And I think I've found a version of myself I like a lot better.

Cancer is so big. And it ripples into every part of our life. As I keep being told we need to be gentle as we navigate the fallout and not judge what we can't do now.

Easier said then done I know. But again I keep being reminded all we can do is live in this moment right now as best as we can. The future is out of hands.

So much love and keep talking, (writing). I kept so many of my big deep feelings locked away thinking I just needed to dog deeper and get over it.
But really I needed to feel it all so I could heal
❤️



Al2248
3 Posts
@law‍ thanks.
@TaliaB‍ , thank you. Your insight and suggestions are helpful. Good to hear your creative juices are flowing. I'm sorry you had the full gambit with the muscle and extensive spread. I have some vocal cord impairment too. Hoping the frogginess isn't permanent but least of my concerns.
Patient is the name of the game but that's not my strong suit. I take the meds, supplements, try to keep routines with exercise, sleep, eating right, breaks and dog playtime. I will look into therapy. Hope you get downgraded on your risk levels. Thanks Everyone!
Bud
5 Posts
Hi Al2248. I am really new to this support group. I only got involved yesterday. I wanted to reach out to you as a survivor and to show you that healing is possible. I had been diagnosed with throat cancer back in March 2019 (after having had what I thought was a nagging sore throat for months) .
The team of oncologists I had assigned to me after the biopsy decided I would receive 7 weeks of radiation and 3 heavy doses/treatments of chemo. My treatments finished at the end of June 2019. It was tough following my treatments for a period of time but with the support of my wife and 2 adult children, I have made a full recovery. My taste buds are back to about 85% of what they used to be and I have difficulty swallowing certain things like bread but with some minor adjustments as to how and what I eat, I feel great. I am exercising daily and I have a whole new outlook on life. At my last follow-up with my oncologist he said I was doing remarkable in my recovery.
There is a positive light at the end of this tunnel. You can heal and you can get better. Stay as positive as you can and be thankful for what you have. Best of luck as you go forward!
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