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Caring for my husband
Ilse58
3 Posts
Hello everyone. I have been reading your posts now for a month and have finally the courage to post. My husband was diagnosed end of April with a sarcoma on this tongue. With covid all of his dental appointments took so long to get as they were working reduced hours. We were referred to Juravinski Cancer Hospital to see the surgeon. Upon this visit which I could not go to because of the visitor restrictions they took a look and biopsied the area . The first course of treatment would be radiation to shrink the tumour then surgery. Upon results of the biopsy he went back to the surgeon and they said its operable and here's what we can do. Two sections of his mandible to be removed and repaired with bone from the femur, excision of the tumour, feeding tube and 7-10 day hospital stay. In the mean time he had three CT scans head chest femur. After the radiation oncologist had a look at his scans he wanted the Sarcoma team to review. At the next visit to the surgeon which I was able to attend things all went to hell. Inoperable stage 4 squamous cell carcinoma with some sarcoma involvement. We are waiting on the Medical Oncologist appointment as they want to try Chemo and see how he responds then possible radiation. I myself am a breast cancer survivor and I know how hard waiting for these appointments is. He is 59 we have been married 32 years and as long as that never been sick. My heart is shattered.
11 Replies
Brighty
6765 Posts
‍ ‍ @IIse58 sorry....trying to tag you but cant... I'm going to be back in touch with you during my lunch.
Whitelilies
1073 Posts
Ilse58‍ Hello.....thank you for sharing.....and opening up to us.....I am so sorry to hear of your husband's diagnosis......I have heard wonderful things about the Juravinski Cancer Hospital (I am in Toronto myself). It is all very overwhelming now....I understand.....plans change on a dime....for many of us.....your husband was told a plan....and then results from another test, changed things.....but he will get to see a Medical Oncologist....there will be a "new" plan......and that may "swerve" too.....
I think, these days, we must all PIVOT.
Be ready to change....to swerve....to go to plan B.....never hold on to one thing......it may need "tweaking".....the chemo may help too.....and back to plan A.....
If you need to talk more......contact at Juravinski, an Oncology Social Worker; get appt....talk a bit more...feel included in plans if possible....covid adds an extra layer of stress.....
Try, each day, to take a walk, outdoors, if possible....just to breathe in the fresh air.....then breathe it out.......gather your thoughts...and re charge.....it is vital.
Keep sharing....we are here, to support, you, and your husband.
Regards
Whitelilies
Ilse58
3 Posts
Thank you. I just feel like we are drifting right now as we are out of the surgeons hands and the oncology radiologist for now. I know we aren't but its hard to see him like this.
Brighty
6765 Posts
Ilse58
I still can't tag your user name. Cancer is so darn unpredictable. Thank you for having the courage to post. You will find a lot of support. I myself was a caregiver and found my guy's course of treatment changed so many times because new issues kept arising. the wait was unbearable between scans and results. I had to find some good distractions.... reach out to others for support. The worst part is the helpless feeling...watching your loved one suffer is so painful. I would trade places with my loved ones to take their pain away. Your husband is so lucky to have you. I'm praying that the radiation works for him. One step at a time and please make sure you are taking care of yourself too. Do you and your husband have things you like to do together as a break from cancer?
Ilse58‍ - Working okay for me Brighty
Brighty
6765 Posts
Thsnk you for tagging for me Lacey_Moderator‍ .
Cynthia Mac
3194 Posts
Ilse58‍ , As Whitelilies‍ Said (and as you know), things can change on a dime in “cancer land,” and while it’s really hard, we’ve got to do our best to adapt. Not always easy: I remember the day I got the call to say Dad’s cancer had metastasized. I was expecting another routine “all clear,” and instead nearly had to pick myself up off the ground I was walking on at the time, when I heard his cancer was now stage 4.

I’m glad you were able to be there for that second appointment. I can just imagine how the blood would have rushed to your ears (and his) when you heard the news. It’s good you were there for him.

I hope you get his oncology appointment soon and that you’ll let us know how that goes.

PS to Brighty‍ - if you put in a capital “i”, lower case “L” you should be able to tag.

PS to other people reading: this is a safe place to share - you don’t have to wait a month to join the conversation or share your concerns or ask your questions.
D33
13 Posts

It is so hard to accept and deal with these cancer issues after being together for such a long period of time, this is my situation as well, healthy all those years and then slammed with these horrific diseases. Wish you the best treatment plan and keep the faith.

D33
13 Posts
Hi Ilse58:
Thank you for reaching out. It definitely is hard to deal with. We are hoping for the best treatment plan and my faith is what is helping me get thru and opening doors that cannot hold me back.
Ilse58

Thank you for introducing yourself. I am glad you took the leap and posted. I am sorry to hear of your husband's diagnosis. I see on your other post your appointment is June 24th. While you wait, start jotting down any questions that come to your mind or your husband's mind so you can take them with you and have them answered. So much information comes at you in this consult, as you know, it is good to write down, or record if they are agreeable, the information in order to go over it later.

Keep us posted how the appt goes
PS - congrats on your survivorhship!

Lianne
law1
483 Posts
Welcome, Ilse58‍ to this supportive site and you are a champ for having the courage to share the story of you and your husband's cancer journeys.
Cancer is a terrible challenge we all wish were not in our lives or in the lives of caregivers and our loved ones.
I had cancer at the base of my tongue and it was a fight to tolerate the recovery after radiation. I extend my admiration and courageous battle stance to both of you.
I send you and your husband calm wishes for decisions which are correct for your lives.
law1
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