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I'm So Scared #198818
08-02-2019 12:21 PM
08-02-2019 12:21 PM
Joined: Jun 2019
Posts: 39
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Dizz_zzey Offline OP
"OCF across the pond"
Dizz_zzey  Offline OP
"OCF across the pond"
Contributing Member (25+ posts)
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Joined: Jun 2019
Posts: 39
I'm not having a good day. I've started to pack for surgery and I've started to over-think so much. I keep wondering what I'm going to look like, how I'm going to live with the 'new normal', will people accept me etc.

I know it's natural to feel low and I know this feeling won't last that long, I'm just frustrated and tired with it all.

I sometimes don't think some of my friends understand the severity of my cancer, even though I'm beingincredibly honest and open. I know some of them don't know what to do (I got asked out for dinner the other night, when I explained I'm struggling to eat and am embarrassed to eat in public, he said "Just take some more morphine, you won't worry about people then". Needless to say I didn't go.

Surgery is in 11 days. I know this is causing the anxiety to creep in. I've actually broken out in a cold sweat (I took my ttemperature just to check that it was an anxiety attack and not me getting sicker), I just want this to be over. I want it to be 12months time where things are hopefully over and I've adjusted to my new normal.

What did some of you do to get your mind ready for surgery?


Female 39 ex-smoker, rarely drinks

Stage 4 Oral Cancer (T4aN1/N2bM0 SCC of the left side of the tongue) Diagnosed on May 20th 2019

Started immunotherapy trial keynote 689 5th July 2019 (2 doses pre-surgery)

Radiologically Inserted Gastrostomy (RIG) fitted 9th Aug 2019

Surgery 13th Aug 2019 sub total glossectomy, neck dissection, radical free flap reconstruction

Home 22nd Aug 2019

Radiotherapy due to start mid-late September 2019
Re: I'm So Scared [Re: Dizz_zzey] #198822
08-03-2019 12:20 AM
08-03-2019 12:20 AM
Joined: Feb 2019
Posts: 3
Leeds, England, UK
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Carmel59 Offline
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Carmel59  Offline
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Joined: Feb 2019
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Leeds, England, UK
Hi Dizz_zzey,
For me, focussing on the practicalities helped. I kept working through in my mind that I have to have this operation, my surgeon has a lot of experience, the head and neck cancer support team were great with any questions , determinedly NOT looking at Dr Google till I was after it. For me, just working through these kind of steps in my head every time i got panicky really helped. I also got one of those meditation apps and worked through the free bit of it. I had left neck dissection but i wouldn't say it's "disfiguring"... I was offered NHS make up and camouflage sessions once it had healed, for my neck and for my arm where they'd operated to take the flap.
Obviously anxiety will probably increase as you get closer to the op date, but for me by the time it came to it, i just was raring to go and get it over with so I could start recovery.
Don't know if any of that will help you, its just my take on it, and I've been told I'm weird often enough. crazy

Last edited by Carmel59; 08-03-2019 12:21 AM.

March 2017- operation to remove SCC tumour from upper left palate. Partial maxillectomy, free flap forearm reconstruction, left neck dissection. Tracheostomy was c/o as a matter of course following risk of swelling. Back teeth removed as precaution as radiotherapy was predicted. Lymph nodes came back clear, no involvement so rx not required.
HOWEVER, 2 years later , Jan 2019, SCC found in left buccal mucosa, removed by laser. Two operations c/o as first did not have clear margins.
Re: I'm So Scared [Re: Carmel59] #198823
08-03-2019 12:31 AM
08-03-2019 12:31 AM
Joined: Feb 2019
Posts: 3
Leeds, England, UK
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Carmel59 Offline
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Carmel59  Offline
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Joined: Feb 2019
Posts: 3
Leeds, England, UK
... And just an afterthought about people's understanding for what I was going through... I had some friends telling me " just enjoy the rest, I'd love to sleep for 12 hours" and others who went way overboard on the "oh my goodness how awful" reaction... I don't have a partner and my daughters live abroad so couldn't be here too much, so in the end I just decided to drown out everybody else's thoughts about how i should be coping/reacting and concentrated on keeping my inner me protected from them all and focussed on keeping calm and matter of fact about it.


March 2017- operation to remove SCC tumour from upper left palate. Partial maxillectomy, free flap forearm reconstruction, left neck dissection. Tracheostomy was c/o as a matter of course following risk of swelling. Back teeth removed as precaution as radiotherapy was predicted. Lymph nodes came back clear, no involvement so rx not required.
HOWEVER, 2 years later , Jan 2019, SCC found in left buccal mucosa, removed by laser. Two operations c/o as first did not have clear margins.
Re: I'm So Scared [Re: Carmel59] #198840
08-05-2019 09:44 AM
08-05-2019 09:44 AM
Joined: Jun 2019
Posts: 39
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Dizz_zzey Offline OP
"OCF across the pond"
Dizz_zzey  Offline OP
"OCF across the pond"
Contributing Member (25+ posts)
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Joined: Jun 2019
Posts: 39
Hi Carmel,
Thank you for sharing your experience.
I'm hugely organised and planned. Whenever I think of a question to ask one of my team I put it on my phone s do that I can ask it at the right time.
I've got a counselling session booked for Wednesday so I can talk through my fears.
I'm also very lucky where my husband, family and friends are ridiculously supportive for me.

I was just having a bit of a wobble. My husband had just gone away with some friends and all of the "What Ifs" from the dark part of my brain started going on and on. I cried. I cried a lot. I got angry and then I got scared and then I wobbled.

My surgery is a week tomorrow and I honestly can't wait for my tumour to be removed. I'm uncomfortable and already on a lot of morphine sulphate (tablets & liquids) nsaids and paracetamol. I hate feeling 'bunged up' so I have to take senna to keep me regular. I hate feeling sluggish. I hate that my tongue is completely alien to me. I hate this feeling of not being in control.
I can't wait to get this thing out of me.

I'm just nervous about what I'm going to wake up with. Will they take two thirds of my tongue, as planned? Will something have gone wrong and they'll need to take all of my tongue? Or will the immunotherapy have shrunk the tumour and they only take half?

I totally understand people's understanding being way off. My lovely sister in law said she'd like to take me to a restaurant when my surgery & radiotherapy are complete. It's a beautiful thought and gesture but I'm anxious about that and I've not had the surgery yet! Lol.
Oh and my mum applauds my weight loss (I've always been big but mostly comfortable with it).

I've friends who tell me I should have lots of people around me to prevent me from getting depressed, but I need to hermit away to accept my new life. Those friends are currently on 'mute' until further notice 😉


Female 39 ex-smoker, rarely drinks

Stage 4 Oral Cancer (T4aN1/N2bM0 SCC of the left side of the tongue) Diagnosed on May 20th 2019

Started immunotherapy trial keynote 689 5th July 2019 (2 doses pre-surgery)

Radiologically Inserted Gastrostomy (RIG) fitted 9th Aug 2019

Surgery 13th Aug 2019 sub total glossectomy, neck dissection, radical free flap reconstruction

Home 22nd Aug 2019

Radiotherapy due to start mid-late September 2019
Re: I'm So Scared [Re: Dizz_zzey] #198853
08-11-2019 09:57 AM
08-11-2019 09:57 AM
Joined: Jun 2019
Posts: 24
San Antonio, Texas
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Mokie Offline
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Mokie  Offline
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Joined: Jun 2019
Posts: 24
San Antonio, Texas
Hi Dizz_zey
Just wanted to let you know I’ve been frequently thinking about you as your surgery draws near and wishing you the best outcome and smoothe recovery. Hugs.


SSC Lt sublingual tongue; Age 62
Positive biopsy 20June2019
Staging done 2 Jul : Stage 1
Quit smoking 15 years ago; not a drinker; no HPV
Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up.
Partial Glossectomy 22Jul2019
Re: I'm So Scared [Re: Mokie] #198854
08-11-2019 10:59 AM
08-11-2019 10:59 AM
Joined: Jun 2019
Posts: 39
D
Dizz_zzey Offline OP
"OCF across the pond"
Dizz_zzey  Offline OP
"OCF across the pond"
Contributing Member (25+ posts)
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Joined: Jun 2019
Posts: 39
Hey Mokie,

Thank you very much. Your message and kind words have given me a well needed boost.
On Friday I had a RIG (Radiologically Inserted Gastrostomy) fitted. I was originally told I would have a PEG buut due to the position of my tumour, they felt they might dislodge some cancer cells into my body.

I'm resting at home, although my sister took me out for some gelato and well deserved sister time.

I'm feeling really calm about the surgery now, I just want to get rid of the tumour. It's uncomfortable, eating is a nightmare, I'm getting grumpy over small things and I'm tired of this thing taking control of my life.

Having the RIG fitted has meant that I've met some of the nursing team who will b looking after my care, as they put me on the ward I will be on after I come out of critical care. Everyone is lovely and I feel really safe with them.

As soon as I can I'll let you know that I'm OK.

Massive hugs to you


Female 39 ex-smoker, rarely drinks

Stage 4 Oral Cancer (T4aN1/N2bM0 SCC of the left side of the tongue) Diagnosed on May 20th 2019

Started immunotherapy trial keynote 689 5th July 2019 (2 doses pre-surgery)

Radiologically Inserted Gastrostomy (RIG) fitted 9th Aug 2019

Surgery 13th Aug 2019 sub total glossectomy, neck dissection, radical free flap reconstruction

Home 22nd Aug 2019

Radiotherapy due to start mid-late September 2019
Re: I'm So Scared [Re: Dizz_zzey] #198856
08-11-2019 07:09 PM
08-11-2019 07:09 PM
Joined: Jun 2007
Posts: 10,349
PA
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ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,349
PA
Hi Dizz!

We all have been where you are and we all understand how you are feeling. Its NOT easy, not at all!!! Take those who seem to sail right thru everything, they all have at some point struggled no matter how calm and resilient they appear to the world. Over the years, Ive learned thru so many others that facing the cancer diagnosis and treatments are similar to the stages of grief. Having all those emotions coupled with everyone's ingrained fear of the unknown can easily become overwhelming to both patients and caregivers. Sometimes people need some time alone to reflect on everything thats going on and whats coming up. For others, they may prefer to keep super busy or surround themselves with friends and family. No matter what path you choose, it really is ok. Nobody should ever feel guilty for their choices of how they mentally manage what feels like the weight of the world on their shoulders.

Unfortunately the public is completely out of touch when it comes to understanding oral cancer (OC). Many have never even heard of it before. In the US there is such a huge movement for awareness for breast cancer, so much so that it even has its own color that people wear to support it... bright pink! When the general public thinks of cancer they automatically think of the biggest ones like breast, lung, prostate, skin cancer, etc. The average person does not know anything about OC, nothing at all. When I was originally diagnosed in 2007 I didnt know OC was even a possibility, I had never heard of it. I had no concept of what having OC meant. Fortunately, Ive always been someone who reads and investigates things I want to know more about. In my quest for more info, I discovered OCF. I couldnt believe the hundreds of strangers Id never met helping me! Those kind hearted patients and caregivers would go on to eventually save my life! They taught me so much more than I ever dreamed possible. Those wonderful people helped me to become a much better person who over 12 years later still tries to pass along that same kindness with info and support to others like yourself who are just starting out. If you want to help the people in your life who are trying to support you to learn more about OC, its fairly easy to indirectly get this done. "Accidentally" leaving printouts about OC laying somewhere they're visible, laying out in the open as if you had been reading it and just put it down. Then giving whoever you are trying to help educate opportunities to "find" the printouts and read thru them. Try going to the main OCF site and printing out several pages from the Understanding section (the Understanding link is below) or a few of the informative threads here on our public forum. By reading thru things they "accidentally" find laying around they'll learn more plus it avoids you needing to have any in-depth conversations explaining the numerous things you are facing.


You have our support from people who do care and want to see you succeed going thru everything as easily as possible. Any questions you have we will try our best to help you with them. Sometimes its nice to know you have the support of hundreds who have also been thru many of the exact same things. Its perfectly ok to lean on us and if you need to... vent, get all those frustrations out. Im glad to hear you will be talking with someone. Its a big step many hesitate to take, knowing you need this is the first step to helping yourself. Every one of your posts shows me you are so much more prepared than most patients. You are very fortunate to have the support of many who love you which is priceless!!! Knowing the people who dont quite understand your entire situation can be frustrating, but it sounds like they're trying to be supportive and positive. Im sure in their hearts they do mean well and want to help you. Since going out to a restaurant might not be something you find enjoyable after treatments are finished, maybe theres something else you could suggest to your sister in law? Most patients need more recovery time than they originally prepared to have. If you figure out something thats at least a month after your anticipated treatment end date, maybe theres a special event you could plan for? Its a very positive idea to have something to look forward to doing, hope you can figure out an alternative to eating out.

Best wishes with everything!!!

Main OCF site, Understanding section


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: I'm So Scared [Re: Dizz_zzey] #198864
08-12-2019 06:39 PM
08-12-2019 06:39 PM
Joined: Jun 2019
Posts: 24
San Antonio, Texas
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Mokie Offline
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Mokie  Offline
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Joined: Jun 2019
Posts: 24
San Antonio, Texas
OK Dizz. I will be following closely. You sound alot calmer.
It must be relieving to know that the G-tube is in and ready to receive pain meds and meet your nutritional needs. That’s a big step right there that should relieve a little tension. And.... there’s nothing like a sister by your side .... I always wished I’ would have had one. So happy she’ll be there to hold your hand. I’ll be there in spirit lady. ❤️❤️❤️


SSC Lt sublingual tongue; Age 62
Positive biopsy 20June2019
Staging done 2 Jul : Stage 1
Quit smoking 15 years ago; not a drinker; no HPV
Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up.
Partial Glossectomy 22Jul2019
Re: I'm So Scared [Re: Mokie] #198869
08-15-2019 06:55 PM
08-15-2019 06:55 PM
Joined: Jun 2019
Posts: 24
San Antonio, Texas
M
Mokie Offline
Member
Mokie  Offline
Member
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Joined: Jun 2019
Posts: 24
San Antonio, Texas
❤️❤️❤️❤️❤️❤️❤️❤️


SSC Lt sublingual tongue; Age 62
Positive biopsy 20June2019
Staging done 2 Jul : Stage 1
Quit smoking 15 years ago; not a drinker; no HPV
Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up.
Partial Glossectomy 22Jul2019
Re: I'm So Scared [Re: Mokie] #198870
08-16-2019 01:05 PM
08-16-2019 01:05 PM
Joined: Jun 2019
Posts: 39
D
Dizz_zzey Offline OP
"OCF across the pond"
Dizz_zzey  Offline OP
"OCF across the pond"
Contributing Member (25+ posts)
D

Joined: Jun 2019
Posts: 39
Hey everyone.

I made it through. Now 3rd day after surgery. 1 drain is out. One more drain to come out and hopefully my catheter will go.

The tracki is frustrating because I'm trying to rush. Not used to slowing down.

However I've walked 10 metres today and have spent nearly 5 hours in a chair, rather than bed.

I even tried to sip water, again in going too fast and my free flap is still swollen.

Everyone is very happy with my progress. So I've been very lucky to be given my own room, in the hospital, for the weekend, so that I can try to sleep.

Thank you Mokie, Chrissie and everyone. I'll keep you posted with news and I'll catch up with what's been happening with you all.

Xxx


Female 39 ex-smoker, rarely drinks

Stage 4 Oral Cancer (T4aN1/N2bM0 SCC of the left side of the tongue) Diagnosed on May 20th 2019

Started immunotherapy trial keynote 689 5th July 2019 (2 doses pre-surgery)

Radiologically Inserted Gastrostomy (RIG) fitted 9th Aug 2019

Surgery 13th Aug 2019 sub total glossectomy, neck dissection, radical free flap reconstruction

Home 22nd Aug 2019

Radiotherapy due to start mid-late September 2019
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