Hi everyone! So, after weeks of waiting and almost 2 months from the diagnosis of my boyfriends recurring oral cancer, we check into Moffitt tomorrow morning at 5:15 a.m.. So many emotions are being felt at the moment - nervous, scared,excited to finally start a new journey to get my boyfriend back to the healthy and happy person I fell in love with. I know life will not be back to the old normal, and there will be a lot of things to get used to. I just feel happy to finally be able to see progress to get rid of this horrible thing we call cancer.
On Monday we had our consult with his surgical team. Impressive does not even start to describe how amazing they are. I have no doubt he is in the best hands and by skilled and very caring people. I know they will give. Him the best chances to beat this and thrive as much as possible
Again this forum and everyone that has given a kind word or advise has been beyond helpful and I know our journey will be made easier with this support.
Danielle
Wish you all the best! Was newbie "on" here a long time ago and now back with recurrence myself...was not my intention !!!....BUT...so happy to have all the support gang on side....All the best Danielle!....JL
Thinking of you both Danielle.
Please let us know how it all goes..
Tammy
What a great post! Waiting is over and looking ahead to getting the beast put away for good. You've done great to stay focused and knew where to find knowledge and comfort and where to stay away from. Good luck and stay close, the journey is pretty bumpy and we'll likely have some ideas to help.
Don
Thinking of you and your boyfriend, Danielle. Hope all goes well and that we hear from you soon.
I hope that the surgery went well and the healing is progressing nicely. Let us know how you're doing.
Hi all - Steve had his surgery last Thursday. We checked into Moffitt at 5:15 am and they took him back for surgery around 7;15. The surgery lasted 10 hrs. They expected it to be more like 8 but it took 3 cuts to get clear margins.
Unfortunatly, that also meant they had to take more of the tongue then expected. They could not save the whole front tongue. So basically molars forward. I did not ask exectly what % that is, but I atleased 50% maybe more.
They also took nodes from both sides of the neck - wrist flap was performed and tissue from his inside thigh was removed to repairs the write area.
His Dr's were very happy with how everything went. The nodes to them "look" healthy but we will need to see what the pathology report says.
I have been taking turns with his mom on staying with him. Exhaustion does not even describe how I feel at times. You really cannot get any good sleep in the hospital no matter how great the nurses are and private the room is. I even got pulled on driving to the hospital on Saturday to releive his mom because the officer thought I was drunk - nope - just that tired. She was nice when I explained and just warned me to wake up some and try to get some rest.
Unfortunatlly, all of my scares of his attitude and feelings around the surgery came true. He is very depressed. He is mad and feels he will never talk again. His Dr's say he will but with time and therapy. He will be able to be understandable and go back to work - we just do not know the degree of clarity. I look at this as positive - I think I could have lost him - we could have been told a much bleaker outcome,and I am thanking god I still have him but he does not have this view.
Therapists have been to see him - he does not talk to them a lot. They have him on anti-depressents and anti-anxiety meds. He gets very anxious when walking and starts shaking violently - they said it is from being scared he cannot breath due to the trach. Today they wanted to remove his trache for a smaller step down one and do a procedure to move his feeding tub from his nose to his stomach - they beleive he will have this for 2 months or so. He refused both procedures the minute he found out they involve needles or another surgery. Dr's tried to talk him into it, but from what I understand nothing they said helped. I am at a lose on what to do and so is his mom. We both just keep hopeing something will motivate him to be pulled out of this funk.
I do not know if any of you had these feelings or if you have any advice. I/him mom and Dr's all were prepared for this to be his reaction. But I know it will take him to really want to get better and move forward with treatment for this to be a sucsess. Thank you again - Danielle
Hi Danielle,
I haven't replied to any of your posts thus far but have been reading them. My dad had a hemiglossectomy in November for a BOT cancer. This was a recurrence after radiation so recovering has been slow. His cancer is advanced so it's very different in that sense. I can however share that it took more than one procedure to get clear margins and I know all about the panic due to the Trache. Everyone on here that helped me get through this shared their experiences and the trache is absolutely the worst part. As a result, my father sleeps sitting down or propped up with a light on. His trache was in for about two and a half weeks due to a second surgery but was quickly removed thereafter. It was nice to be able to hear my dads voice. It was certainly difficult to understand but still an improvement. I think once your boyfriend gets his trache removed his mood will perk up. To this day my dad still has an NG tube. He refuses to get the PEG. I think what your boyfriend is experiencing is normal and almost expected. It's hard a caregiver to see someone you love but we have to be supportive and respect their decisions. With time hopefully he will get better. There is nothing wrong with him being on anxiety meds and anti depressants. My dad still takes anxiety medication every so often. I think with time your boyfriend will be eating and talking and back to a new normal soon enough. Make sure you take the time to take care of yourself. I have been so preoccupied with my fathers care that I neglect to take care of myself. Take help from others when necessary so that you can rest and eat. Prayers to you and your boyfriend!
Hi, Danielle. So glad that the doctors are positive about your boyfriend's prospects. By my reckoning he is only up to Day 6 or so after a very long surgery. I've had two similar surgeries. On both occasions I was in a pretty terrible state of mind for the first 8 days. One of my surgeons told me that Day 8 is the first day to expect a real improvement. Surely the NG tube to peg transition can wait a bit and then he only has the trache to worry about. If you can talk him into having that changed, he will find life much easier.
You can tell him that on Day 6 or 7 of my first tongue op I hallucinated during the night, thought the hospital was under attack, pulled out my NG tube and whatever I was attached to and ran out of the hospital down some fire escape stairs. I had the trache in! Once I was out in the cool night air I realised that I had probably been mistaken and found my way back to the ward. Don't know how I did it because even now I get lost going from one building to another. I thought I had gone out of my mind and insisted on seeing a psychiatrist. Because I couldn't talk it was all very difficult but after that the rate of improvement was speedy. I didn't really cheer up until I left the hospital though.
If the hospital could put you in contact with another youngish man who has gone through the same thing, that might help. For all the love you and his mum are giving him, you can't show him what it looks like a year or so down the track.
I feel for you all. It's a horrible cancer and it's awful being "medicalised" and jabbed and anesthetized and cut. But if the cancer is removed, the body recovers and so does the mind in time.
Best wishes
Maureen
Danielle, I was worried about his reaction post op. Poor guy! Mentally he is beating himself up over things that cant be changed. This road is so much harder on patients who internalize things. Im hoping the medications will eventually work to lift his depression to a more manageable level.
Im sure you and his mother are both past exhausted. Please remember to take care of yourself too. Is there anyone else who could take a couple shifts to give you guys a little break? Even if its only a 4 hour visit every other day, it would help. You could take turns having a short day there or it could cut 2 hours off each of the time you spend at the hospital.
Best wishes!
[quote=Mysonny]Today they wanted to remove his trache for a smaller step down one and do a procedure to move his feeding tub from his nose to his stomach - they beleive he will have this for 2 months or so. He refused both procedures the minute he found out they involve needles or another surgery. Dr's tried to talk him into it, but from what I understand nothing they said helped.[/quote]
Removing the first insert of the trache and replacing it with a smaller one is part of the process of getting the whole thing removed. It is a progression and he'll need to allow this to happen in order to heal. Steve is probably at the worst part of the trache experience right now if he has a similar setup to what I had. Luckily I didn't have the anxiety issues that he seems to be having (other than the fear when the trache felt like it was starting to clog up), nor did I really have trouble with my NG tube (& therefore didn't need the PEG) so I can't really comment on those issues.
My first trache insert had the full cuff and they supplemented some oxygen as well. Once they moved me to a smaller one, the oxygen was removed and I had to learn to breathe on my own, unassisted. While it was really, really nice to get one of the tubes removed (actually two because they had removed the catheter by then as well), it was obviously harder to breathe at first. Combined with the tendency of the trache to clog up, it was quite disconcerting. But it took another day and then I started to improve quickly. A few days more and they can put the plug in the end of the trache & if he does well, they can remove that nasty thing.
Good luck with the next steps of the process and take care of yourself too!
[quote=Alpaca]If the hospital could put you in contact with another youngish man who has gone through the same thing, that might help. For all the love you and his mum are giving him, you can't show him what it looks like a year or so down the track.[/quote]Danielle,
That's some great advice there from Alpaca. That's exactly what happened to me after my laryngectomy. I couldn't speak anymore. The only way I could communicate was by writing or trying to use sign language. I was mad, upset, scared, depressed. I thought I would never be able to talk again.
Then one day a man who had the same disease and operation visited me while I was laying in my hospital bed feeling sorry for myself. His voice was completely clear and understandable, he could speak and pronounce his words very well. All of a sudden I had hope. My entire mood changed. I looked at that guy and said, "I can be like that. I can speak again."
And of course I did. I have even done public speaking on quite a few occasions.
Please ask the doctors, nurses and speech therapists at the hospital if they know anyone with a history similar to your boyfriend that could come to visit him. I'll bet it would make all the difference in the world in his mood and attitude.
Best wishes and good luck. Hoping for the best for both of you.
Hi everyone - Thought I would drop by and give an update *******
Steve came home last Friday. They did remove the large trache and he had the smaller one inserted 36 hrs before we left. I was there when his Dr did it. They asked him to try and speak by plugging the hole - he did but just a loud noise came out. Then they capped it that night and 24 hrs right before we left they removed the trache all together. I was so happy he did not come home with. He still did not let dr's place the feeding tube in his stomach so he still has it through his nose. Even after at home and pulling on it a few times and hurting himself by accident he still will not consider getting it through the stomach.
Home has been interesting. The first day back he was alert and just trying to get comfortable. While I was trying to figure out all the meds they sent him home with - stool softener, laxatives, anti depressants, morphine and a sleep aid. He hardly slept the first two nights and either did I. I think the morphine makes him restless. He could not lay in bed for 5 minutes without getting up to groom himself, clean his trache site or just walk around. I asked him and he said he just felt restless. He takes the morphine 3-4 cc every 4 hrs to stay ahead of the pain. I have noticed other symptoms when he takes the morphine - jerks and twitches and drugged out look. Last night it was worse. He had forgotten when he gave himself the last dose - I write them all down and keep to the schedule unless he says he does not need it yet. Well I had to go shopping and he must of took another dose while I was gone. He could not remember when. He finally fell asleep -sitting up on the sofa - he cannot sleep laying down he just coughs like crazy. Still he coughs a lot and has some discharge from the trache. Well all this morning he was still very disoriented and it took him long periods of time to put a thought together then write it down. He slowly came out of it. He is on boost plus and is supposed to take 7 a day. I was lucky to get in 6 yesterday. Before the morphine insolent I could see he was feeling better. I can understand him more and he was speaking more. It is hard but clearer then even the day he got home. I repeat what he says so he knows I heard and understood him. Today it was a bit worse but I think the morphine was part of it. Hopeing this is a good sign that I can though hard at times understand him this soon. It is better if I remind him to hold his hand over his trache site and take s deep breath before talking. Any other suggestions?
Yesterday he was brushing his teeth and notices s stitch around the base of one of his tooth and it appears to be attached to his tongue. Is this normal. His reaction was - look Dr Otto must have done this to keep my tongue down so I do not bite or hurt it while the flap heals! Maybe that means once it does I will talk again ? I said maybe we will ask her but you are already talking and it seems to be getting better already and with therapy and work I know it will keep getting better.
His spirits seem a lot better too. But that also could be the drugs. lol.
There are sparks of him and his usual personality so I will take that for now. Anyways sorry to be so long winded but it had been awhile. We go back to Moffitt on Friday for a checkup with his surgical team. Bye for now - Danielle
That sounds like a considerable improvement Danielle. I'm pleased for you both.
I can identify with the restlessness. I had it too but didn't associate it with morphine or other pain relief. It's still very early. Soon he might not need so much pain relief and then the glimmers of his old personality will increase.
Hope you have a good check-up on Friday!!
Thanks for the update! I was wondering how everything was going.
Glad to read he is making progress. Healing takes time, usually much longer than anyone expects or is happy with. Being so soon after such an invasive major surgery Im sure there is still considerable swelling (even if you cant visually see it). Once that goes down his speech should improve. A speech pathologist should be a huge help in making his speech clearer. They have many exercises and tricks which can be tried.
Keep up the good work! Being a caregiver is a tough job. Make sure you take some time for you too.
Best wishes!
That's excellent news that he's home so quickly and I'm so glad that you didn't have to come home with the trache still inserted. I guess that must mean that the flap donor site and skin graft source site are healing nicely as well. I still hate to think about how many gauze pads and rolls of nonstick tape I used while my wrist healed. People kept asking me to show them my tattoo, haha.
I can't really comment on the morphine issue because I didn't have that much pain & didn't need it at all after the first three days. After that, all I needed was an occasionaly tylenol. Hopefully the pain subsides and he can cut off the heavy drugs soon.
Did they start feeding him (conventionally) in the hospital at all? Before they let me go home, they made sure I was able to feed myself, and showed me how to place food over the hump of my tongue, eat smaller bites than what I was accustomed to, and swallow. After I proved I could eat enough calories this way, they removed the NG tube.
Not sure about the stitch anchoring his tongue down. It's probably just a function of where the incisions had to be made in his particular case, and support was needed in that particular spot. Once it has time to heal, I suspect he'll be able to get it removed. Something to ask about on Friday. Maybe they'll even pop it out then.
He's been through a pretty serious surgery, a helluva scare and now he's doing better than perhaps he imagined. The healing is happening and he's already proven that he can speak a little. This should lift his spirits and accelerate the improvement. As the spot where the trache was heals a bit more, he won't have to be so careful supporting it with his fingers. There may be a bit of weird vibration that is happening when he tries to speak, but it will start to feel more normal soon. Speech clarity will vary from day to day. It still does in my case, about one year post surgery. But he should be improving significantly in the next few weeks.
That's a pretty good amount of progress in a short period of time. You're a pretty good writer and I liked reading what you wrote, it's likely good for you to express yourself that way. It's great he has someone as caring as you looking out for him.
I haven't had such serious surgery but I do know that when I've been on a lot of pain killers I am up at strange times in the night doing weird stuff, like gargling, flossing messing with creams for my neck, burns and what not plus restless legs, jerking and falling asleep setting up. Do you all have a humidifier? I find it helps a lot. Can he go out at all yet? I'm thinking a little walk or drive might do him some good as soon as he can. A change of scenery beside the hospital and house helps.
Keep us informed.
[quote=QueenKong]Do you all have a humidifier? I find it helps a lot. [/quote]It helped me a lot too. Still does, especially in winter when the air is less humid. If you don't have a humidifier, or even if you do, it also helps to sit in the bathroom after one of you has just taken a shower and breathe in all that steam in the air. Hint: make sure you don't turn on the exhaust fan and let all the steam out.
What wonderful news! I am glad to hear that he is progressing well after his surgery. It sounds like he is coming along quite well. Thanks for the updates.
Happy Sunday everyone -
Thank you all for the helpful suggestions. : ). I think talking to another survivor his age who has been there & done that would be very helpful. It is hard to see any light at the end of the tunnel at the moment and especially would be helpful for him to see someone who is living the "new" normal.
Well, as for the update - we had Steve's first post op follow up visit at Moffitt this past Friday. First we met with speech therapy to do the swallow test. He could not swallow water or applesauce but with thickener added he could swallow water the consistency of necture. This was a big surprise and reality check for him. He has not tried swallowing since his surgery - we have all asked him to. I think it stund him with what he could not do. The speech therapist said that is a good start.
After we met with his surgical oncologists RN - They remove the staples from his neck - which is healing nicely. Then went to his wrist and they removed the stitches that kept on the dressing around his skin graph on his wrist. This was the first time we got to see his skin graph site - Gosh I was not expecting that. It looks more like a burn then anything healing well but one area where the graph did not take over a tendon - it was exposed. Not unless usual they said but it will just take longer to heal. Then they removed the stitches and dressing from his leg. Which looks good. His mouth is healing really well. Still swollen but his Dr was happy with the range and strength with back to front motion it was already showing.
Next we found out the result from his pathology report from his surgery. They removed 20 nodes from his right side and 22 from the left. On the right side 2 nodes were positive and on the left 1 node was positive. Obviously not the news we wanted to hear. His Dr said it is especially concerning that he had positive nodes on the right side - since this was the side he had radiation on earlier this year and she said cancer really should not have shown up there. His primary tumor was 3.5 cm on the anterior two-thirds single focus. They said it was a PT2. So they staged him at stage 3. The other very very hard news to take ( and I only now know after research why the Dr looked so concerned is that there is perineural invasion as well. The Dr stated that she still considers it curable but this for sure made it more aggressive then she originally thought. Gosh it feels like being kicked while already down. Because of these findings they are going to start him on 8 weeks of daily radiation with 3 rounds of chemo in between. I do not know the exact radiation or chemo they will do yet. The Dr said this will give him the best chance to fully make sure the surgery got it all and that it has less of a chance of coming back in the future but that she is going to watch him very closely for years. I am just devastated. I am such a positive person usually but after this news and knowing the hell he has been through and will go through it is hard. I give all of you so much credit. We will keep fighting - no giving up here. Just a slap in the face with reality.
Sorry that there were affected nodes and perineural invasion. The doctor thinks its curable though so you can hang onto that.
He's going to find the radiation and chemo hard so you will need lots of support. You refer it to a journey so it might help you to see this as another twist in the road but one that you can navigate with your amazing love and determination. Think of the rads and chemo as effective fighting agents against any microscopic cells remaining. They hurt but they get the job done.
Most of us have been through it and needed lots of help at the time - emotional and practical: family, friends, professionals, Cancer Society. All assistance is useful.
Much love
Maureen
Sorry to hear about the positive nodes. I guess now you have some time to wait until the radiation and chemo treatments will begin.
Glad to hear that he was able to eat at least something with the swallow test. The first couple of times I tried to swallow something, I had a similar experience. Drinking plain water or something with very little viscosity, I didn't have much control over where it was going in my mouth, and it would dribble down my chin. But thicken it up a bit, and I was able to swallow it. After this, I started on watered down cream of wheat, soups, applesauce, pudding, and then up from there. The technique seems a bit foreign and is more akin to swallowing something from a straw, or trying to "vacuum" drool from your lips than what we are used to.
Also glad to hear that the flap site on the wrist looks good. Mine had also split open, kindof along the spot where the artery was removed. It took plenty of triple antibiotic ointment and gauze pad wrappings over a few weeks until it healed. Even one year post surgery, I can still see where the staples held the new skin in place. And yes, it looks more like a burn than anything else.
Keep on fighting! Sounds like you have a good plan of attack in place.
Sorry about the need for further treatment. When John was told that his cancer had metastasized, I was very upset. Then one day, while driving home, I was thinking about how that I had one day less with him, but in the next moment, it occurred to me that even if he wasn't sick, we would always have one day less -- that's the nature of life. This thought has helped me through some rather rough times and has helped me feel determined to sustain a positive attitude. I hope this helps.
HI there... I dropped the morphine within a day. It gave me nightmares and I had a restless sleep and woke up feeling blurry and unrested. Is he in pain? If he's not try seeing how long he can go until he begins to get uncomfortable. With his type of surgery I'd be willing to bet he's more numb than in pain. Though everyone is different. Also depending on how much food and fluids he is taking in the morphine will effect him differently (kinda like taking drugs on an empty stomach)
Drooling is par for the course and depending on how you sleep you can choke on it. Tell him to sleep on his bad side with a cloth under his head. That way the drool is less likely to trigger his choking response and the drool will pool and run out onto the cloth. Everyone has to figure out what works best for them but this may help. I have chronic post nasal drip from rads when I sleep I still favor my bad side that way I can't "feel" it during the night.
as for the stitch it depends on the surgeon. My surgeon removed 30 - 50 % of my tongue. he also removed the floor of my mouth on that side and rebuilt it with the skin right up to the gum line. Because of this I actually have a fully formed tongue that is very adaptive and moves well. In fact my speech is completely clear except for when I am tire then I have a slight lisp.
Some drs actually tether the tongue in place (why? - is beyond me) If this is meant to be permanent, once everything is over and he is feeling better maybe they can adjust it.
Hugs and you're amazing.
Danielle,
I feel like I am going through some of this with him. My free flap surgery was 2/10 and I had a very hard time tolerating the trach. They took it out after the first 3 days and switched me down to the smallest size before transitioning me to 'the button'. I would press on this when I wanted to speak. Otherwise it was neck-fart city! My teach took a long time to close - I was on steroids when I went into surgery (huge mistake in hindsight). Almost 3 weeks. Once I was off the steroids it closed up within 3 days.
With regard to pain meds, I had much the same experience as Vanpaddler - I didn't need a lot of pain meds after returning home, have only used Tylenol and occasionally the hydrocodone (2x but it leaves me with a headache). The one thing they gave me in the hospital that I sorely wish I had now is Ativan - it is an anti-anxiety drug. Calmed me down, helped me relax and sleep. Helped me so much more than the morphine. I actually stopped the morphine 3 days before I left the hospital.
NG vs. PEG: if he's OK with the NG now I guess go with it. However, I agreed to have mine placed while I was in the hospital because I learned I had to go on for rads & chemo, and because I literally felt like a cow with a ring through my nose. Hated it - I was always pulling on it by accident. Plus, not sure I would ever have left the house to go shopping if I still had it. Too hard to explain. The PEG is easy to use, very straight forward. Mine got infected due to the steroids I was on, but most people have no problem with it. Plus I can go out in public and no one is the wiser. No idea what his preference will be.
Continued good healing and prayers to you, your boyfriend and his Mom. I am learning this is a process and we just have to put one foot in front of the other and get through it
Heather
Hi all,
Sorry not to update in a while life has been life - but I have read all of the comments and take all the info anytime we have a dr appointment that I have learned from here. Heather nice to meet you, I wish it was not in this way.
So a bit of a update and where we stand now -
Shortly after my last update Steve pulled his feeding tube out by accident while he slept. He was happy that when it came out he could actually swallow water and liquids and his speech did improve. However, he could not intake enough to keep the weight on and in the three days it took to get him in to get a G tube he lost 5 lbs ( he is down to 135). After the G-tube was put in he gained so much more strength and his spirits brightened. He could even taste the fruit in the flavor water I gave him. He has yet to try anything of substance other then water and juice. It is annoying how little he has tried to be honest.
His mood after finding out he would need chemo and radiation was horrible - complete depression yet he does not want to see a phys and even stopped taking his Lexapro until he re-started on Saturday after a stern talking from myself and a dr.
Friday was his birthday - poor guy not only had an appointment at Moffitt to check on his surgical areas, he got up that morning and overnight his neck had ballooned up it was not even swollen the night before. Thank god we had that appointment. The Dr had to lance his neck and a ton of liquid and puss came out. The Dr was concerned why he got an infection this long in the surgical recovery process. The Dr also ordered to have a RN come to the house each day to clean and re-pack the wound and he is on anti-biotics. What a birthday. This took his - I am finally recovering mood right back down to hopelessness.
I am terrified at how he is acting - extremely depressed - stays in bed and watches movies and only leaves to get boost, meds and bathroom. Has not wanted to shower, shave or anything - totally not like him at all, little to no contact with friends and in general blah about everything. I am calling Moffitt after work to see what we can do - since he keeps refusing treatment for his mental heath. I understand the depression but I cannot see going into radiation and chemo in this state. The only good update is that they upped his boost from 300 to the 500 cal version.
Also, and I could really use some help on this - he is having horrible mucus - he is on musinex and he throws up at times and says he is constantly nauseas' has anyone experienced this? My thought is that he is on - anti-biotics, pain relief - usually liquid Tylenol but at times morphine, musinex and only taking in water and boost so I think his body is sick from so many meds and no substance food wise. Also since they lanced his neck he is not taking in anything via mouth and hardly talking - he said the throat is too swollen.
Wish I have a more upbeat update. I have to admit this is really taking its toll on me and our relationship. I am not used to this person he is acting like, and it feels like there is no appreciation for all that I do. I am trying to suck it up but it has become very hard.
Danielle
This is very difficult for you, Danielle. I felt the opposite to you boyfriend in that I had one of my sons travel from the UK to look after me for 6 weeks. I felt I had to be brave for his sake so that his stay with me was as pleasant as I could make it. That was a pretty good motivation. I also had a couple of big meltdowns in hospital where I wept for hours. I wonder if males find it harder to rinse their emotions in tears.
The other thing is that Boost, which I assume is a formula like our Fortisip, should sustain him. I've met a woman who lives on it. She's full of energy. I really don't think you need solid food to recover from surgery or be healthy in general.
I wonder if your boyfriend is taking you for granted because you are so loving and caring. Maybe if you told him what you have expressed here, he would wake up to himself. I know that depression is not something that the sufferer can necessarily shake himself out of. Nevertheless, it's possible that he could summon up a more positive attitude if he was kind of shocked into it.
The infection sounds ghastly. What a horrible thing to go through.
Has he talked to any survivors? Can the hospital link you to one?
You are such a good person to nurse your boyfriend through this as well as going to work each day. I wish you all the best.
You can not make him do anything even though it is clear he needs to reach out and get his head straight before he starts down the really bumpy road.
You can only do so much and you need to look in the mirror and take a hard look and reflect on how you are surviving.
You can reach out for yourself too and please keep that at the front of your thoughts if the toll on you continues to grow.
It is very difficult but more than a few folks have been in your situation and needed to focus on ensuring their own way forward, knowing they are giving as much as the patient will accept.
Hoping for the best for you both
Danielle, sorry about what you and your boyfriend are going through. It really isn't easy. I have had the support of a therapist for the last two years and the most valuable lesson I have learned is "to indulge him." Your boyfriend has a lot on his plate and it is extremely hard not to be angry, self-conscious (hence not wanting to see his friends, etc), and sad. He's probably feeling that he is the most unlucky person in the world right now. That makes it very hard for him to do what he should do for his own health, much as you may push. It is easier not to get angry with him when you tell yourself "I should indulge him and give him more space right now." You will do whatever you are doing for him now no matter what, but telling yourself that you are indulging him will make you less resentful of his lack of effort.
As for the G-tube, up until this past October, John was living on Neutron and he was fine. He got all the essential nutrients from it and was able to maintain his weight despite all the treatments he was getting. If you boyfriend enjoys a cup of coffee or tea, there's no reason why he can't have a few sips of these everyday. He can also have some ice cream or even jello if he wants. It helps to give a sense of normalcy.
John always says I worry too much and indeed, I do the worrying for both of us. But I make it a point that he just needs to focus on his treatment and he knows that and appreciates it.
Good luck to the both of you. I have you on my mind.
Danielle, Im so sorry your update was not a better one. Recovery takes a long time, always much longer than the patient is happy with.
Your boyfriends nausea could be from the formula. Usually the main reasons it upsets the stomach are how thick it is or the speed its being delivered. By slowing down the feeding and adding a few ounces of extra water to it should o the trick.
Its very common for OC patients to struggle with depression. Many patients have trouble adjusting to all the changes and facing their own mortality. Its nothing to be ashamed of to need help getting thru it, most do even quite a few caregivers end up taking anxiety meds.
I felt so bad when you felt like you werent appreciated. Im sure your boyfriend appreciates everything you have done for him but might not always show it. Especially when he is having problems with depression, seeing the whole picture is not something he is able to manage. I agree with you about being depressed, its not good going into rads and chemo like this. I really hope your boyfriend is one of the luck few who sail right thru treatments with barely any side effects. Ive noticed those who focus the most on their intake have the least problems with their side effects.
Hang in there! Your boyfriend should be making some progress soon and hopefully will snap out of this low point.
Hi everyone - I loved reading your comments - it really put things in so many different perspectives. I did talk to Steve's social worker yesterday. I explained his current state and what we are all dealing with (including him). She stated this is exactly the reason why she tried to push him to start therapy before and during his care at Moffitt (it is a service they provide). He had refused it several times - first I think because they offered it the day of diagnosis and he was shocked, and then in the hospital where the thought of having to have to come back for one more appointment seemed like a horrible option. She said she would meet with him when he is there on Monday to have his surgical sites checked. She went on to say that she will insist he start, because his Surgeon would not be able to keep prescribing his anti-depressants if he does not. She went on to say at times they even hualt all treatment if a patient is in such a dire state and refuses therapy. She said she knows he is not there, but she will want to talk to him alone and really impress on him how important ( and perfectly normal) it is to deal with his mental health.
It is funny when his parents are not up helping us out, he comes out of his shell a bit more. The social worker says it is because he leans on me and his mom so much to take care of everything, and now it is just me for the rest of the week, he knows that indeed I have a ton on my plate (work, him, housework, and all of the pets). So last night he actually did a chore I asked him to do, watched tv in the living room, and started to try and drink water again from his mouth. All little things but big considering the last few days. He even was taking a shower when I left this morning in preparation for the home nurse to come. I do not think he has showered in 5 days. Funny the things you become grateful for as little glimmers of progress. 4 months ago we were counting down the days to our key west trip and getting excited and now I get excited when he can swallow some water or takes a shower. Wow, how life changes.
I have to say I also have become a pretty good nurse. I used to not be able to look at blood without having to run the other way. Now I change his packing in the hole on his next twice a day. I took this over after his mom left. Wow - I could not believe how hard his skin on his neck has become - like plastic. It actually scared me at first. He still has a lot of yellow fluids coming out of it, but the swelling is going down.
Again, thank you all of the support. I have my moments. I have a lot of perspective to the situation. I need to focus on it day by day and stop feeling like we are missing so much - going out with friends, vacations, "normal" everyday work/home life. I hope one day we will have some of that "normal" back but I know it will not be here tomorrow or next week.
Danielle
Thanks for the update! Im so relieved to read your boyfriend is getting some help for his mental health. I was concerned how he would fare with the upcoming treatments if he wasnt quite himself. Rads isnt easy at all and easily can wear even the most resilient patient down mentally.
Please remember to take some time just for you. I know you have so much going on right now and you probably feel like you cant stop to even catch your breath. Even if its a walk around the block to clear your head, it helps. Try getting out once a week to do something to take your mind off everything, something fun that you enjoy.
Best wishes to you both.
Hi Danielle,
I have been reading your posts and Im so sorry that your boyfriend is taking this really badly. My father felt depressed, was hospitalized and barely talking to anyone for about a month. I then flew from the US to see him and as soon as he saw me, he wanted to get out of the hospital ASAP and get back to talking ASAP. He too was on NG thru the nose for a month - the idea of a PEG freaked him out. I made my father meet an oral cancer survivor who also got a glossectomy and lymph nodes removed and was doing great 1 year post surgery. I think this man really motivated my dad to get better! And its completely ok to be on antidepressants - anything to make him feel better. Just keep reminding him that you are grateful to have him and you love him no matter what!
Remember to take care of yourself as well - you cant afford to be sick/ tired at this point.
Praying for your boyfriend and you! You will see an improvement soon
Hi all - Well we had a follow up visit today at Moffitt. They checked his surgical sites - all doing well. Put him on a higher anti-biotic for his infection in his neck. The social worker did talk to him by himself to access his mental state. She did say he would benefit with therapy ( we already knew that) however, he is not open to it and he is just very mad at everything right now - himself, the situation, and the world. His oncologist said that how he is acting is about par with where she finds most of her patience that have his surgery.
It really does not help that he has not been able to sleep for a few days - non stop hiccups. He literally is walking around like a zombie all day and night. He is currently is on the anti depressants and I can see a more positive change about his attitude. However, the morphine which he is using for pain is making him very agitated and cannot sit still. The Dr said he still should take it as needed, but it is hard to gauge when that is. He has weaned himself off of them before, but at the moment it is almost like he is scared too. When he finally does, his hiccups keep waking him up. So at the moment he is a bit of a mess. However we did have a nice little car ride on Saturday to get a smoothie (which he had most of and could swallow it) His speech is not as good as it has been, and I think a lot of that has to do with mucus and swelling from the infection but he is talking a lot it is just harder to understand.
We found out we have an appointment next week to see radiation/oncology to go over the plan for the rads and chemo forthe next 8 weeks. They said he will start with the rads/chemp on 4/6. I really hope he is stronger, gained some weight and more stable with sleeping, and medication before that happens. I have to admit the radiation and chemo is scaring me more then the surgery. I really hope his body can take it.
Hi. It sounds as if there has been quite an improvement even though things have been tough and still are. The smoothie is a good sign. Have plenty of those before treatment because radiation makes you lose taste for some time. Is there something he could take for hiccups? I had to take anti-heartburn medication for a long time. There must be something to settle the digestive system or whatever causes hiccups.
Many people here found the radiation and chemo very hard. Part of it depends on where the radiation takes place. If it affects the throat it is painful but for me, with the radiation on the forward side of my jaw/face/neck, the pain was limited. Not that I didn't have to take lots of oxycodone for mucositis, but I was never prevented from swallowing. So everyone is different. I much preferred it to surgery because I simply hate being in hospital long term.
Radiation presented me with major transport challenges. Having to get through the city to the hospital everyday for 6 weeks seemed impossible when I started but it worked out. There were volunteer drivers, friends, family ... We made it and the staff at the oncology unit were excellent. You tend to feel well looked after at units like that. There are other people like you and staff are trained to be cheerful and supportive. There's a medical professional available every day so if there's pain and discomfort there's always someone to help.
Best wishes!
If he is on morphine I'd think that the pain is pretty constant and pretty intense. If so, he should be taking them on a regular schedule, not when "needed". Check with the doctor again and the pain management department too.
You can ask his doctors or even pcp for some muscle relaxant to deal with the hic ups. John had it too. It will help him relax and sleep too.
Hi Danielle,
You guys are going through a lot. Not sure what antidepressant meds he is on, but one thing that really helped me in the hospital and is helping me through radiation's Ativan (aka Lorazipam). It is an anti-anxiety drug and it really helps. You don't have to take a full pill either, if its too much just split it and see what works for him.
Hope things ease up for you guys. This is definitely journey, and all of us need to take it one step at a time. We just need reminding from time to time. I do!
Heather
Hi Everyone - I have some devastating news to share - Steve passed away on April 20th. The week before he had been acting very strange. 3 trips to Moffitt and after a blood test it showed his calcium level was at almost 3x the normal rang. They admitted him to hydrate and get it under control, unfortunately he had a sever anxiety attack that night and had issues breathing. I was called by his mom to say he had coded and they placed him on a ventilator for life support. When they went to vent him they had issues because of all the surgery in his mouth and he went about 5 minutes without oxygen. Tests ended up showing he had minimal brain activity and the his parents made the horrible decision to take him off life support.
Life without Steve has been the hardest thing I ever endured. I lost my love and our future together. To loose him after the surgery and all the pain he dealt with is heartbreaking.
I want to thank everyone for the support. I turned to this group in a time of devastation of a horrible diagnosis and I found comfort and knowledge. Steve would have wanted me to go on and live a fulfilled life he was robbed of and I will. I will remember all of your strengths during these dark days as I repair my life without him. Thank you - Danielle
This is devastating news, Danielle. I did not expect that to happen. So sad that a young man is, as you said, robbed of his future.
Lots of love
Maureen
Danielle, I am so sorry to read of what happened to Steve. This must have been a terrible shock. So very sad!
Try thinking of the memories of happier, healthier times and let that help to somehow ease your pain. My deepest condolences to you, may Steve rest in peace.
Danielle,
I am so sorry to hear about Steve. It really hurt when something like this hits one of us. My heart is heavy and sad. I wish you only strength and good memories of your time with Steve.
Oh Danielle, how awful. I am deeply saddened to hear the news. My sincere condolences to you. I hope you know how fortunate Steve was to have you by his side in the horrible battle. Please take some time for yourself and you are always part of the family if you want to come help others through this difficult journey.
Hello Danielle. I too am saddened by this news. It is so tragic and unfair.
Know that you have been a wonderful Caregiver and that your love comforted Steve . I know that you will, in time, honour his memory by continuing to live your life. Memories do live on.
Take care, Tammy .
Danielle, I am saddened by Steve's death. I can imagine your pain from having looked after him, worried about him and then suffer the loss. My deepest sympathy to you and do take care of yourself in your grief.
Danielle, I am so very sorry to hear of Steve's death - it was certainly unexpected. My deepest sympathy to you.
Wow, what horrible news. I had such high hopes for Steve and was always looking forward to your updates, believing that he'd be improving. I'm so sorry for your loss.
Hi everyone - I wanted to let you know I have read all of your messages of support and care since Steves passing. They mean so much. It was a month last Wednesday that he left us. I have to say I have my ups and downs. The week after he passed I could hardly get out of bed. The few weeks after life started getting better. I have been meeting up with friends here and there and always enjoy their company. However, talking myself into going is a big task. After any interaction I feel drained and exhausted. My Dr said although I am on some mess for depression it is the body's way of dealing with the emotional toll of it all.
Life has changed so much in the last month. I moved back into my own house ( we had lived in Steves) and everything of his reverted to his parents. After his passing they have had little contact with me. Even boxing all of my remaining stuff and leaving it outside to be picked up. I have only a small idea why this is, but I think they feel I was not there for Steve enough at the end. The truth is after Steve was declared brain dead, and after everything we had been through I physically and mentally could not sit by his bedside and watch him being kept alive by machines while they waited days for family and friends to come say goodbye. It killed me to see him have seizures while his body was rejecting the life support. I don't think he would have wanted me to see that either. I will forever feel regretful that I was not that strong to be there 24/7, but I did and visited when I could. The truth is I was on my way to the hospital when they removed him and was not even there for him as I passed. I was given no warning they were even doing it that morning. To say the least a lot of hurt has gone down in the last month and I know Steve would be devastated by how I was treated. Shortly after re-diagnosis we had a talk about what would happen if something happened to him. We both predicted this, but I thought after all of what his mother and I went through together that would have changed.
Being a caregiver to Steve was my sole job for months and it is a struggle not to have that in my daily life. I miss him more then words can express and waking up everyday without him is a bullet to the chest. I know in time it will get better. The one month anniversary hit me very hard. I did not expect that. I guess that is grief it is unpredictable and non-forgiving. I know I will move on and it is what Steve would have wanted. Thank you again for the support. I will be stopping in from time to time to offer support and any advise to others. Danielle.
Below is a link to a few pictures of Steve and I during happier times. I hope it works, but I thought it would be nice for you all to have faces to our names.
https://www.facebook.com/photo.php?fbid=10204795106031519&l=4ef61d43bdhttps://www.facebook.com/photo.php?fbid=10205474921266475&l=543566a1c2
So sorry to hear of your loss. I hope you feel some comfort in knowing you took such good care of Steve. Please accept my deepest condolences. Denise
Danielle
the pictures of you and Steve are beautiful, and you were both so lucky to have each other even if it should have been for a much longer time.
Please remember that Steve loved you, and he would not want you to feel guilty or bad. You did what was humanly possible to do. It is hard that you were not told when the life support would be disconnected - but maybe Steve would not have wanted you to be there. Death is an odd thing - some people want their loved ones there, others wait until they are out of the room.
I'm sorry that you were not able to come to some sort of resolution with Steve's mom. That may never happen, or it may happen years from now when you least expect it.
Please be kind to yourself - this has been a very hard road for you as well.
Maria
Danielle, the photos are lovely and remind me of how young you are. How unfair it was for Steve to lose his life so young. It must be terrible for his parents who will not be acting rationally right now so don't take the way they are treating you personally. You were heroic in how you looked after your boyfriend and now you need to pick your life up again. Maybe you can write to his parents on a later anniversary and try to make peace with them.
Best wishes
Maureen
So sorry for your loss. I know how you feel as I lost my mom April 22,2014 . After being a caregiver to my mom for the past year it really hits home not having her here any more. I hope you find peace as I'm trying to do but it sure is hard. I'm grieving so much everyday but at least I know my moms pain is gone and that alone brings me peace.
Maybe you should copy your journey here on OCF and send it along with a letter to his parents. At least it will show how much you cared for there son. For this they should treasure.
You have beautiful Pictures of you and your Sonny . Such beautiful memories.
Prayers
Heidi
