Post Surgery Day 9; I was discharged.

Sorry I've been really quiet but I've been really busy in the hospital with speech therapy and also trying to move about now. Oh and I had a day with a high temperature.

The hard work was worth it. The trackie came out and I was taken out of my lovely private room and moved to a head and neck ward. I then worked hard at the ice chip technique and was declared well enough to go home. On day 9.

So I am in my own home. I am with my husband. We have both been very emotional with each other.

I've got to continue practise with ice chips and I have to practise with small sips of water too.

I feel very battered and bruised. I feel very vulnerable and emotional, but I am so glad to be home.

hugs to you Dizzy, you just went through a war. Take it easy and just keep plugging forward. We are fighting for you!

Hi Connie,

Thank you so much! I will keep you all updated with my progress.

Quick question.. I'm over salivating. It's foamy and I can't seem to be able to clear it unless I wipe it out of my mouth. Has anyone experienced this?

It could be from swelling in oral cavity....combined with no movement from tongue to clear away the secretions.

Crystal

Ahhhh! That makes sense.

My husband has ordered me a baby mucus removal machine. One that can suck it all out nicely. Hopefully. With my luck I won't be able to get to the back of my throat.

Glad your back home Dizz. The inflammation can maybe be causing over production of the salivary glands. Maybe a good thing. Better than dry mouth. Mucous in the back of the throat can be working it’s way up from the trachea from it being irritated and trying to heal. The more liquids your able to get down the thinner it will keep the secretions to be able to get them up and out. Your awesome Dizz. You’ll be my inspiration down the road if I end up needing more surgery. Hugs.

Ah that all makes sense, thank you Mokie. I'll keep pushing with my swallow practise so that the secrections and mucus are thinner. I definately rrecommend a baby nasal mucus remover tool for removing excess mucuss, instead of the tonne of tissues I've been using.

Thank you for your kind words.

Update:

The speech therapist is impressed with my speech and prounciation. Plus my swallow has come on in leaps and bounds. I no longer hydrate through my G tube, I'm drinking from a glass/cup. I've learnt that drinking from a bottle isn't good for me right now, so when I leave the house for appointments I'll carry a small cup with me or use a flask with a wide mouth.

I'm also allowed to try thicker liquids such as custard, yoghurt, ice cream, mash potato and gravy etc. I feel a bit nervous about it, but also determined. My husband took me grocery shopping for some bits to tempt me. Lets see what I can do.

I met with a rep from the company who send me the shakes for my G tube and I raised the concern that I'm ingesting around 95g sugar every day with their product. I don't feel comfortable consuming that much as I'm concious of becomming diabetic. I've asked if I can speak to the dietician so that I can make my own blended meals.
If she says no, I will rebel and find a way

I was fitted for my mask for radiotherapy. Good grief that made me anxious. I have been given all dates and times for my sessions. Tomorrow I have a CT scan wearing the mask. I'm a bit nervous but I feel I'll be OK once I'm there.

Today I'm feeling really positive and focussed. The fatigue still kicks my butt, but I'm accepting that my body needs to rest up as and when it wants to.

You ARE a rebel Dizz, but obviously it has served you well. So happy to hear how well your progressing. Sounds like your appetite is good too. High five!!! ❤️

High five back to you Mokie!

How are you doing?

Hi Dizz.
I’m doing Ok. Had some swelling under my jaw both sides and left side of neck under ear where I can feel swollen lymph nodes. Had surgery on 22 July and have 2 more weeks before my 6 week check up and really don’t want to pester the surgeon as I’ve already called him twice and had to go see him cause a wound was draining yellow exudate where a suture was coming through and rubbing the floor of my mouth whereI didn’t want to talk or eat. There was no infection and he just had to cut the suture which gave me some relief until a 1/2 inch thread finally came out of the wound and it closed. Been having intermittent numbness of left cheek and left side of my mouth also. Really don’t know if I should wait the 2 weeks since there’s no tenderness or redness in the neck and the sensation is coming back slowly in the tongue which maybe the cause of the intermittent numbness in the cheek and mouth. I hate playing doctor so I can spare them from something that maybe completely normal for this Partial Glossectomy. Then again it could be an ominous sign of recurrence in the lymph nodes already. They should have a walk in Office with a nurse practitioner to evaluate these kind of things so you don’t have to pester the surgeons. I know their overwhelmed at times.

Oh Mokie,
I know what you mean by requiring a walk-in office with a nurse. You start questioning things, then second guessing them and then before you know it you get yourself in a tizzy.
I hope everything is setting down and the intermitten numbness has gone.

Hi Dizz,

It sounds like you are progressing rather well!! That's awesome!

Back later, Crystal

Hey everyone,

I was told last week that I need 33 doses of radiotherapy due to a 1mm margin by whats left of my tongue. They want to ensure that I don't lose that little sliver of tongue and have to go through the whole surgery again. I am OK with that as I am in a good place right now.
I am also going to have chemo. 3 doses of cisplatin once every 3 weeks, 10 hours each session, but they will admit me for an overnight stay for each dose. Again I am happy with that.
My immunotherapy (pembrolizamub) will start at the same time, this will be once a week every 3 weeks for 12months.

All of this starts next week, where I'm being admitted on 16th Sept. I'll have immunotherapy first and then the cisplatin over night. Radiotherapy will start on the 17th at 9am.
With the way everything has planned, I will have chemo and rads done by Oct 31st. I am super happy with that as I'm 40 a week later, so I'm hoping I will be well enough to have the birtday gin and tonic I promised myself

I've still got numbness in my left thumb and part of my left hand, my ears, both sides of neck and parts of my chest. I still have some swelling in my jaw, neck and chest. I've no mucus, but I still over salivate, except when I'm laying down and thats when my mouth goes dry. I get a dry mouth at night, so I drink water to freshen my mouth up. I use biotene occasionally but I can't always get the correct amount (one night I put a bit too much in and my mouth went really sticky). I might have to try the mouthwash rather than the gel.

I'm now using my RIG/feeding tube very little. I have one medication that I put through it, and a protein drink as both taste awful, so I'm happy to bypass my mouth.

My speech is doing well. I still struggle on the phone so my husband is on stand-by should I have an issue.

I don't feel as vulnerable as I did before when I'm out of the house. It's only when I get really tired do I feel that vulnerability more. I had one incident with a man who got into my booked taxi. I had my walking stick as I was so tired and shaky after a full day in hospital. I politely said to him that he'd got into the wrong taxi by mistake and he started having a go at me telling me it was his. Once the taxi driver asked him if he was Mrs XXX the guy got out of the taxi and started to yell at me telling I need to learn some manners.
At this point my mouth had started to become foamy, I'm shaking as I'm getting into the taxi and I couldn't talk. The guy was still yelling at me as we drove away.
The old me would have given him what for, but I just couldn't talk to tell him to grow up and go away.

Ah well.

I'm starting to eat foods such as soup, custard, smothies, etc. I made a jacket potato and mashed the hell out of the flesh, adding lots of butter, yoghurt, cheese and chives. It took me 90 minutes and a big glass of water, but I did it and it was sooo good. I also made a guacomole by mashing a very ripe avocado with lime, yoghurt and garlic. That was great too.

I'm going through my recipe books for ideas to see what I can adapt for OC patients and I'm thinking of writing a recipe book. I see it that I've got quite a bit of time off work and when I'm having good days that'll be the time to concentrate on the book. Plus it'll put my chef skills into good use.

Hope you're all OK

So happy your doing well Dizz. Sounds like your mentally ready for the chemo and radiation. I maybe following in your footsteps. My first post op appointment with the my surgeon is this morning. I’ve been having intermittent numbness of my Rt face and lips especially in the mornings. Lips feel swollen during that time. I also feel some swelling over the angle of my Lt jaw (? Parotid. Gland). Tongue is still burning and I have nausea every morning now for a couple hours then occasionally throughout the day. I have a feeling my check up for Stage 1 Partial Glossectomy is not going to be good. I’m prepared for the worst. I hope to be as strong as you Dizz should my pathway follow yours. Keep up the good work and thank for the detailed update. Hugs.

Oh blimey Mokie, I hope it's better than you think. The numbness could be anything. If you do end up following me I know you can do it. You are a lot stronger than you give yourself credit for. Look how far you've come.
I'll be thinking of you tomorrow for your appointment

One chemo down, 2 to go.
One rad down, 32 to go.
One immuno down, 14 to go.

It's been a busy 24 hours!

Chin and neck area red and stinging. My team were meant to give me some cream to rub into the area and on my facial and neck scars, but they didn't. I've used pure aloe flesh from my plant to ease the stinging.
My dentist at the hospital was supposed to provide me with mouthwash, but didn't. I'm going to have a chat with my team to find out what went wrong. I was in hospital for the whole day on Monday and wasn't contacted (they make appointments and let me know where to go)

I posted this on the wrong thread... SORRY!!!! Even though the Magic Mouthwash was discussed recently on another members thread I wanted to bring it over here to your own thread to continue any conversation on it so it wont take away for anyone elses questions.


Magic mouthwash (MM) is a combination of a few ingredients which can vary. The kind I used was made of lidocaine, Maalox** and Benedryl***. In the US only the lidocaine requires getting a prescription from the doc. Maalox and Benedryl are over the counter meds. Some patients get a different version of the MM, often nystatin is added to cure thrush. When you talk to your doc about MM, ask if this is something you can mix at home yourself. You may only need the doc to write a prescription for liquid lidocaine if Maalox and Benedryl are over the counter items. Im very sorry, unfortunately I do not know what portions of which item are to recreate the MM but your doctor or pharmacist may know. Ive used MM on and off for over 6 years my ongoing health issues. Sometimes pharmacies arent the right "type" of a formulary pharmacy and have sent me with my prescription to another drug store where they do make medication concoctions.

Another thing to mention about the MM is always swish it around in your mouth for 30+ seconds... I always tried to make it to the 1 minute mark, then spit it out. Even if you get a prescription for it and it says swallow it... DO NOT SWALLOW IT!!!! MM can create issues for patients by numbing everything so much as it goes down patients arent able to feel when they are choking, so whatever you do if you are able to get the MM, be careful and DO NOT SWALLOW it. Its always better to be safe than sorry.


** Maalox... an antacid thick liquid medication that coats the esophagus all the way down to coat your stomach, its used for minor stomach aches, gas, bloating, nausea (the mild kind, NOT what OC patients get!!!), diarrhea, etc.

***Benedryl.... another over the counter antihistamine thats used for colds and/or allergies, runny noses, watery eyes, scratchy throat, it helps alleviate swelling caused by an allergic reaction, hives

Hope this extra info helps!!!



PS... I dont mean to confuse anyone reading this, but Id like to clarify some feeding tube info. I wanted to further explain about US feeding tubes, your recent post said the UK has different feeding tubes than in the US. Im not sure what it was called in the UK but theres actually several different kinds here. in the US we have several different ones. The most common is the PEG tube which stands for Percutaneous endoscopic gastrostomy or sometimes called a G-tube. This type of feeding tube is surgically placed thru the abdominal wall into the stomach with a small balloon inside the patients stomach to hold it in place. Theres the nasogastric tube also called a nasal feeding tube or a NG tube. The nasal tube requires no surgery, its more of a temporary feeding tube not meant for long term use. The NG tube is a very thin tube that goes up thru the nose, down the throat and into the stomach. It can easily be inserted and removed at any time, its great for those patients who dont mind putting it in and taking it out or some will leave it in taping it to their face. Theres the J/G tube or some reverse it and say its a G/J tube?? Many feeding tube patients are not even aware of the 3rd kind the J/G option. The J/G tube is not normally the first kind of feeding tube patients are given. The J is for jejunostomy and the G is gastrostomy. is done surgically where the regular PEG tube goes into the stomach and theres a second tube inside that goes into the large intestine. The top of the J/G feeding tube has 3 "ports" with one going into the stomach and the second very tiny thin tube on another "port" that completely bypasses the stomach. This works best for people who have overly sensitive stomachs or had previous feeding tube complications. Many who have the J/G tube will use one port for meds and the other to take their formula in thru. The third port is for nurses using a shot needle to put something into the patients stomach or large intestines. The 4th kind is the MIC KEY button which is another type doctors normally do not offer their patients. Its small without the long tube so its much more comfortable than the bulky PEG or J/G tubes are. It comes with an attachment tube (for feedings) which pretty much turns it into the PEG feeding tube. Its just a little round disc (like the plunger holding the PEG feeding tube in place) with a plastic flip top lid thats inserted thru a small cut into the abdominal wall for the inner tube to go into the patients stomach. This type is preferable for children so they dont end up hurting themselves by pulling on the J/G or G tubes hanging out of their abdomens. The biggest downside to this type is it needs to be frequently replaced... at home by the patient and/or caregiver. Hope I didnt overload anyone with too much info!!! Feeding tubes can be problematic for patients and caregivers as they do not usually get the most attention after they are put in so too often patients and/or caregivers feel like their on their own to figure that kind of thing out which is NOT easy!!! Too many things can and do happen like clogs, nausea, not tolerating the formula, feeling too full/bloated are just a few of the issues patients can have with that kind of thing. But, it is a wonderful temporary tool (for most) to get the patient thru some rough weeks/months until they can eat more normally and maintain their weight.

Somewhere on this site Dizz I read where a lady’s husband carried a bottle of lubriderm with him to radiation therapy and slathered it on after every treatment. His wife said it really minimized his discomfort during his treatments. You could ask them if it’s OK.

John used Lubriderm. It was advised by the RO. We brought it to radiation and when he came out of the treatment, he put it on his neck where he had received radiation. It’s really good. Pay attention to where there are foods in the neck, such as the folds that for. When you’re looking down.

Hey Dizz, If your RO would order an Oncology mouthwash and specify the 3 active ingredients he wants in it, the pharmacist will make it for you. You just need them to write it out on a prescription. They can call the pharmacy and talk to the pharmacist. He’ll probably know exactly what they’re talking about it.

Hi Dizz_zzey,

How are your treatments going?

I hate it that you are already having stinging on your skin. Did you ever get your cream? Scott still hasn't used anything or mentioned any burning on his skin. He just finished treatment #11 and has began having soreness when he swallows.

I believe he still has most of the same issues you mentioned from the surgery. I did buy him some Xylitol tabs to help with the dry mouth and I try to keep some of the baking soda/salt water solution mixed up for him to rinse with.

At this point I think it may be good that he is just relying on his feeding tube and formula. Aside from reminding him about his swallowing exercises and mixing up nutribullets, I have been just leaving him to it.

As for the nutribullets, if you have, or can get one, I have been using foods in it that are anti-inflammatory and "cancer fighting" foods. I don't know if they actually help much but I figure they wont hurt, if nothing else, at least he is getting those extra vitamins and nutrients.

If you want to try it, some of the foods I blend are spinach, kale, strawberries, blueberries, grapes, pineapple, sometimes I throw in some grape juice, otherwise I just add water. There were a lot of other suggestions in my books but those are the ones that have been working best so far.

You probably should have just hit that guy with your cane and went on about your business. haha. Just kidding. It is annoying having to go out in the real world and deal with people when there is already so much going on in your own personal life.

I hope that you are doing well and working on your recipe book. I really hope you get that gin and tonic for your birthday!

As always, Best wishes!!

Pam

Hi Mokie,

Thanks for the suggestion. In the UK we just don't have magic mouthwash sadly. If it's no already made then they won't make it up for you. Frustrating though.

Hi Pam,

My treatments are going ok. I'm glad that's one week down and only five and a half to go. Tiredness has hit me hard twice so far. Once on Thursday and then most of today. Today was pretty much because I didn't look after myself very well yesterday and I'm so annoyed about it. I didn't carry any Ensure with me when I was out and I met a couple of friends for a soft drink in a pub. I only had 700 calories in 10 hours. So I've paid for it today. Cold, shakey. I've now got tinnitus in my ears. I've phoned the emergency hospital number but as I'm not in any pain and have no temperature they won't do anything about it. At least it'll be made on my notes so that my medical team know. They might have to change my treatment plan with the cisplatin, maybe do it in smaller weekly sessions instead. I think my bladder would be happy.

Today I'm finding things difficult though. I need some alone time and I'm not getting it. I'm always with someone, either at home or at hospital. It's driving me crazy. I'm starting to get annoyed at my husband, whether it's because he can eat normally or that he is smoking (my sense of smell has got more sensitive) to that he doesn't see the house in the way that I do and I'm finding it dirty. He goes away for work for a night in a couple of weeks time so I've called a couple of friends over to help me get the house done.

I'm having to bite my tongue, so to speak, to stop me from nagging and being really picky on things, such as how the bathroom door was left not quite open but not quite closed, so kept banging in the breeze. I know this is because I need to be able to control something in my life, but it's not fair on him with me being such a douche.

I've not been given any cream from the hospital so I'm using pure aloe vera and a product by a company called moogoo. It's quite good. The swelling around my scars is going down and my face is nearly normal. I just want to ease the tightness I get where it feels like you just haven't moisturised enough. I'll get there though.

I've got myself a waterpik, that is so helpful. I use it at least 4 times a day. I will make up a small bottle of bicarbonate of soda, salt mouthwash to help when the mucus hits. I'm oversalivating more now, but no mucus yet.

I have a nutri-blend which is smaller and similar but I haven't made any more smoothies. I've lost interest in eating, so am relying on my daily intake of Ensure plus to sustain me, but I think that's down to feeling fuller quiker, the tiredness and generally feeling a little down. I've not had many down days so I'm accepting it for what it is and know that tomorrow is a new day and I'm hoping will bring a better mood.

Sorry to hear Scott has starting having soreness when he swallows. I hope he's able to get some comfort.

Best wishes to you too

Dizz

When your tired and your body says rest Dizz REST.
Sometimes you just have to ask everyone for quiet time and let them know when your having a not so good day. I’m sure they’ll understand. Glad your getting good information and support from our OC sisters and brothers on the site here. Hugs.

Dizzy,

I’m so glad you’ve found the Waterpik useful and helpful.

You mustn’t feel compelled to talk to everyone who calls to ask after you. Maybe someone in your family can be given the task of responding to phone calls. It’s a drag to have to repeat your “story”.over and over. We used to have a friend who called every week to ask how John was feeling and what the doctors were doing for him. I knew it was meant well but I found it too aggressive. I wish I could tell them there’s no weekly progress report.

If you really crave some private time, a short walk round the block is good for you too. Exercise a bit if you can but make sure you do what’s within your ability at this point in time.

Hi Dizz!

I wanted to clarify something about the 3 "big bag" method of doing chemo. This is what Ive seen others here in the US report. Its unlikely the doc will switch from the 3 big doses down to the weekly chemo. Ive never seen that done for anyone on the forum. If you are noticing a difference with your hearing, its probably related to the cisplatin. DO NOT HAVE ANOTHER DOSE!!! (not even a smaller weekly dose) . Tell your doc right away about your hearing! Cisplatin is known to cause permanent hearing and kidney problems. In the US when a patient reports hearing issues and has been given cisplatin, they are usually switched to another chemo, carboplatin. Theres others out there similar so possibly a different chemo. For many years cisplatin was the most effective of all chemos for OC so thats what was almost always used. All the people here who noticed the hearing issues

As far as the chemo days go... from my experiences, nurses automatically give patients extra hydration in IVs along with the dose of chemo. The extra fluids usually help patients feel better. Even if given extra fluids, make certain to drink extra water the day before, day of, and day after your chemo days. The extra fluids help to flush the poison (chemo) out of your system.

Best wishes for an easy week!!!

Aww Dizz,

I'm sorry to hear all of that.

I agree with everyone else. Get yourself some rest. Focus on you, your nutrition and resting right now.

Yes, I do hope they can change your treatments up some to make things easier on you.

You're going through so much, you have every right to be irritable. And I think anyone would be able to understand that. Just tell everyone that you're irritable, and let them know the little things that are irritating you maybe it would help them to be self-aware of the things that they can do to help you out. Let everyone know that you need some down time for meditation and relaxation.

Also you may be able to let your doctor know about it and maybe they can give you some anti-anxiety meds to help you through this. They've offered them Scott a few times but he always asks them can they give them to me instead lol. Of course they can't, unfortunately.😌 But, that might be something that could help you through this with sleeping, anxiety and irritability...

Hugs. Hoping you feel better really soon.

Pam

Hi Christine,

Ahh the cisplatin hearing issues. I've had a hearing test today and everything is normal. My test hasn't changed much from the test I had in July, so that's good. The muffled sound has gone and the ringing is slowly stopping. If I choose to continue with cisplatin, then I have to make that decision on Monday with my medical team.
They've given me the following options:

1) Continue with cisplatin on the same dose if everything is OK.
2) Continue with cisplatin but on a reduced dose, if everything is OK.
3) Stop cisplatin and just continue with RT

I've heard about carboplatin and fluorouracil (5FU) but I've not read up on them yet and so am not sure if either are an option for me. Again I'll find out on Monday.
At the moment I'm torn between wanting to continue with cisplatin as I know it works well on my cancer, with the RT and with pembro, but a weekend of muffled ears and a week of tinnitus after each dose, both turned me into a very grumpy woman

Extra liquid is not a problem. I've been hitting 2.3 - 3 litres a day, on top of ensure shakes or food. I once had kidney stones after not drinking enough fluid and vowed never to have that pain ever again

The week has been much better. I'm finding that I'm addicted to trying different soft drinks. Nothing sparkling like soda, as that makes my mouth foamy, but many a still drink form smoothies, juices, yoghurt drinks, kefir, flavoured waters, cordials, I'm like an addict whenever I'm out. I think it's because I'm expecting the taste loss during week 3 or week 4 of my RT so I'm trying to get as much flavour in my mouth as possible.

Tiredness is starting to kick in, so I've had a few early nights which has massively helped, and I'm also eating well, a combination of ensure (where I'm adding fruit to thicken them up and add extra nutrition), soups, smoothies, a curry (extra sauce and mixed with some rice), yogurt and ice cream.

I've foolishly planned a weekend away at the end of week 6, just before my final week of treatments. It's a trip to see my sister and her family which involves me heading straight to the hotel after travelling a couple of hours. The next day my sister has booked me into a salon to sort out my hair as I believe some of it will fall out during RT. I'll then head to hers to see my nieces and nephew before probably heading back to the hotel. I know it's ambitious and can be cancelled, but I'll see how I go.

Hope you're having a good week

Hi Pam,

Thanks for the hugs. Sleep was definately the issue. Plus the husband and I had a great honest and open conversation about how we were both feeling. It's lifted a weight from both of our shoulders. I slept so well last night

My RT sessions are starting to have a regular time, so I can get myself into a good routine.This will really help me have plenty of rest as I'll be able to plan my days. Mondays are my fullest day where I have dietician, speech therapist, head and neck clinic and then post surgery clinic (every fortnight) on top of RT. 2 weeks down, 5 to go!

I've only got one dressing left to worry about, which is where I split open my abdominal wound. My husband changes that every other day and we've got it all down really well. I can't wait for it to heal as I can have a bath when it has.

My friends and family have been fantastic and have given me space that I need, so I'm feeling much more balanced.

I've been trying to book an appointment with my regular Doctor, but he's been fully booked when I've been available. I'll keep trying though.

I've got my confidence back with food and am being a bit more brave to try firmer foods (only when my husband is around though, just in case) and I'm creating a little "sore mouth" helpful foods section in my fridge and freezer. I have water ice pops, ice cubes, ice cream, yogurts, avocado (to blend in smoothies), cucumber (again to blend into a smoothie). I just need to make a bottle of bicarbonate of soda, salt and water mix into a bottle and pop it in.

I'm also being prescribed a cream to put onto the areas after my RT sessions. It's meant to be really good.

How is Scott getting on?

I'm starting to see an increase in mucus production and the thickness of it. I'm trying to remember/find the water + bicarbonate (baking) of soda + salt mix to help clear it. I'm using wam, slighty salted water at the moment.
If anyone could point me in the right direction, that would be lovely Thank you

One cup warm water, 1 tsp baking soda and 1 tsp salt. Most patients find the salt burns their mouth, I remember I had a hard time with the salt the first few attempts. Its ok to cut back on the salt if you need to. Whatever works for you! Just do your best to keep as much salt as you can in your mixture. Stir it up and take a big mouthful to swish around in your mouth for up to a minute or so, repeat 4+ times a day.

Another idea many here have found helpful is Manuka honey. Its been scientifically proven to be beneficial to patients who use it to help heal their mouth sores. I forget which number but kinda think for the best results patients need to buy at least a number 12 or higher. In the US, Manuka honey is now commonly found in grocery or health food stores.

Hang in there, you really are doing great!!!

Thank you Christine. I'll put that together tonight and play around with the salt levels.

Thank you so much for your comments too. I'm really pleased with my progress. I know I'll lose some bits as the rads continue (10/33 complete) but at least I know I should be able to achieve them again later on in a few weeks/months time.

I have a mouthwash and a mouth spray that will help me continue to eat (HURRAH!!!) It's benzydamine, so it works like MM. I spoke to my team. Apparently some hospitals in the UK do use MM, just not mine. They feel that the benzydamine works just as well. I've used it before I had surgery on regular basis, it comes in a spray too so I can carry it with me when I'm out, it was good stuff.

I told my team about OCF and they are now going to recommend it to future patients from now on. They loved my knowledge and understanding of everything that is happening, and also how I make suggestions and ask questions. They are impressed that it's run by OC patients who share experience and use science based fact and not Dr Google.
They liked the Manuka honey but also suggested propolis as it can be added to water and swished around my mouth. Plus propolis is a quarter of the price of Manuka honey in the UK, and it gives similar results.

My hearing test came back. Compared to the base test I had in July, I have a 25 decible loss from the high pitch area. It's not noticable to me. The tinnitus is disappearing too. As I'm on a clinical trial, I am unable to switch to carboplatin. If I do then I'm not on the trial anymore. So I've said I'm happy to continue with the next dose. My team have said that they are happy to give me one more dose and cancel the 3rd. So that's the plan.

I also had my 3rd big bag dose of cisplatin cancelled. From what Ive noticed with OCFs thousands of members who also were given the 3 big bag delivery of cisplatin, more than half have the third dose cancelled. How it was explained to me, the first dose is the biggest and most important one, the second is a lesser quantity and third even less which does not make much difference if eliminated. The chemo makes the rads more effective by targeting the cancerous cells.

You're doing GREAT!!!! Keep up with pushing your daily intake, even if its just 2 more bites or 2 more sips of water. It all adds up and will help make this easier to tolerate. You also have your world-wide cheering section here on OCFs forum to help you along.

It seems to be quite common to have the 3rd dose of cisplatin cancelled. I was told that in research studies, the overal results of a 2 bag dose compared to a 3 bag dose came up as the same. I am fine with that. So only 1 more overnight stay in hospital. Whoop whoop.

I'm so glad I'm on this site, your knowledge and support really helps keep me going.

husband had 3rd dose but it was cut down as he was too sick to take the full dose prescribed. He was definitely in the worst shape in the hospital after that one. It seems they ended up keeping him a few days if I recall correctly.

Ahh OK. I'm glad I'm not having the 3rd dose now
I'm being admitted for the 2nd infusion. I'll have rads and pembro in the same day. It's going to be a painful week next week I think.

My husband is away for work for 2 nights that week. Whilst I'm looking forward to being able just to allow the fatigue to consume me (and not have to worry about talking to someone or being grumpy at them) I might see if a friend of mine will do a check up on me while he's away.

I had my second big dose of cisplatin last Friday. Today, I noticed some ringing in one ear. I talked to the nursing team who asked me to monitor whether the ringing lasts, gets worse or fades. They said there isn’t much to be done and hope it subsides. If not they may reduce dosage of cisplatin for the final treatment. Anyone else experience ringing in ears?

Cisplatin is known to cause problems with hearing in some patients. When John had his chemo, he was first sent to Toronto General for a hearing test, which I think was the baseline. Then a year after treatment he had another hearing test and there was significant loss. Please monitor the ringing in your ears. As well, let the team know if you feel any tingling in your finger tips. That may be a sign of neuropathy. John did not get his third bag of Cisplatin because he had developed deep vein thrombosis at that point and he was in very poor shape. All my very best.

Hi Dizz,

I'm so glad to hear things got better for you! I really hope your trip works out!!

It may be because you're doing the clinical trial but Scott doesn't have any of those things that they have all set up for you. They did have a dietician come by at the cancer center but he hasn't seen his surgeon since the beginning of August and doesn't see him again until, maybe next month??? And I have no idea if he will get a speech therapist. smh But I'm guessing that they may be waiting until the RT and chemo are finished before going further or maybe just waiting for him to heal some more. Not sure...

Did they have to cut your abdomen? Scott's only surgical wound is on his neck and it has been seeping pus since around the 2nd week out of the hospital. It stopped for maybe a week, then started back up and still looks really bad. Now he has radiation burns on top of it. The burns don't look too bad though and he says that he cant really feel them. I don't know if it is because of the numbness in his neck or if it's just because they really aren't that bad. He says it hurts to swallow but he's not really having any other issues atm. He did have thrush but the nystatin seemed to clear it up. Only relying on the feeding tube for nutrition now, we stopped doing Nutribullets because it burned his mouth but he is still drinking water. He has mainly been resting and having to cough and spit a lot. Bless his heart. Only 2 more weeks left though!

That is so great that you've planned ahead with all of the different foods and even going out and all. And only one more chemo to go. Keeping my fingers crossed for you. I hope it goes well but if it wears ya out remember to just rest when you need to and don't push yourself too hard.

Best wishes always!! and keep us posted. (I always check in and read even though it sometimes takes me forever to get to sit down with my laptop and write. )

Pam

Hey Pam,

In the UK, it's common practice for the National Health Service (NHS) to set up speech and language therapy team, dietician, physiotherapy etc for cancer patients (depending on their type of cancer and wat their needs are). We're very lucky. The clinical trial team add extra blood tests and scans if my health declines, and I'm more likely to be admitted should anything not look as good as they want it to be.

I Googled 'Tongue Twisters' to help with my speech. I said them out loud. I also said the alphabet and then I would name all the things in the room I'm in. I still do this every so often just to keep my speech up. I also try to sing to songs. It's terrible and a lot harder than I'd like, but it's also fun.

My radiotherapy team prescribed me this cream Super Defense Cream. It's amazing! It's really eased my sore neck and face. They said to keep it in the fridge as it cools the aloe vera in there which works better to cool the skin. My hands and nails are in great condition since using it as I massage the excess into them

They did cut my abdomen. They did a radical free flap reconstruction (RFFR) after removing most of my tongue. This where they take muscle and blood vessels from my left arm to replace my tongue. It's sewn onto the remaining sliver of tongue, into the floor of my mouth and into my left cheek. They then took some flesh from my abdomen to fill the hole they left on my arm. My abdomen was then glued closed, but unfortunately I split part of the wound.

I can feel that I am starting to need to rest more, which is frustrating. I may be a larger lady (altough 30kg smaller than before) but I am active. I carry a collapsable walking stick with me in case I need to slow down/rest when I'm out.

Of course I'll keep you update, it's my pleasure to do so. I love our community/family here. Please keep us updated with Scott's progress. Also look after yourself too.

Have a fab day

Hey Barry,

Yup I've had ringing in my ears a week after having my first dose of cisplatin. It's slowly fading away, but I have a 25 decibel hearing loss from the top end of pitch.
I have an audiology appointment booked for 2 weeks after my second dose of cisplatin.

How's your ringing now? Any heaing loss?

Dizzy,

What wonderful ideas to help with speech—tongue twisters, saying the alphabet and singing. I must keep that in mind for members who may need speech support on the future.

Singing slays me. I never noticed how many hymns had the letter 'S' till after this cancer ... and no matter how well I can say certain letters, that does NOT translate into being able to sing them, LOL. You're right to try singing as a therapy! It's a whole different skill. For the sake of the congregation, I practice in the car instead.

And yes, the fatigue! Though in my case I think it's because my thyroid got fried. Oh well.

Hey gmcraft,

Please share. My speech therapist loves how I've progressed and is recommending all 3 to future patients.

Singing slays me too, but I keep going. I can't pronounce D's and G's and it seems that all of my favourite songs have plenty of D's and G's in them. I follow a German group and used to be able to singalong in German. Not anymore at the moment I'll keep practising, only when no-one is around.

I've had an underactive thyroid for 24 years, plus I was a manager in a supermaket doing ridiculous shifts, so I thought I would be used to the fatigue. Nope. Not at all. When I come out of hospital on Tuesday I'm taking a cab all the way home as I would have had 2 doses of rads, 1 chemo and 1 immunotherapy on top of a terrible nights sleep. There is no way I will be able to use public transport as I just don't think I'll be alert enough.

Good heavens, no, get a cab. Or better yet a limo. With a chauffeur who looks like Tom Branson in Downton Abbey. (The movie's out here, and it's lovely!) You deserve a really nice restful ride.

((hugs))

There are groups here, so I am told, that offer to coordinate rides for patients who need treatment and get to the point where they can't drive themselves. Is there something similar where you are? Would your hospital be able to put you in touch with such a group? It's meant to be charitable, a relief / help group ... usually friends or family of survivors who kind of get what you're going through and want to pay it forward from what help they received back when it was their turn. Might be worth asking?

Don't over-push yourself ... it always comes back to haunt you later. Stay strong, but don't USE all the strong! (If that makes sense.)

You can sing German? Wow. I've got a friend who would be a fan. Me, I can fake-follow-along on some Christmas carols, some of the French or Latin ones, but that's it ... German is beyond me. Though I had fun terrorizing my middle-school Sunday School class who were fussing about different Bible translations by bringing them in the old Anglo-Saxon passages and letting them take a look at THAT ... hehehe ... suddenly stuffy old King James didn't seem that rough anymore, and the NRSV and NIV were positively simplistic. It was a blast. (I took a semester of Anglo-Saxon in college for an elective English credit; loved every minute of it. Yes, I am weird. Been handy, though.)

Do you play an instrument?
(Yes, I'm ADD-hopping back to music.)

Im coming into this a bit late, Im not sure who asked about transportation? Different facilities may offer some alternatives for patients who need help getting to and from their treatments. Im fairly certain in the US Hope Lodge has a shuttle for their visitors. For OCFs members who are outside of the US, there could be things available to patients in your area. Unfortunately many of these types of things arent offered until after the fact. I suggest asking both doctors and nurses at your treatment facility. Always remember... If you dont ask, you dont get!!!

The American Cancer Society (ACS) runs a volunteer driver program. I used it myself back in 2007. When I was diagnosed with OC, I had no idea about what it meant to have cancer or go thru cancer treatments. I had known anyone who had cancer. Calling ACS was a surprisingly enlightening phone call. I was not expecting to have any volunteers that would driving me the hour and half round trip to my treatment facility. Back then we lived pretty far out in the country so it was quite a hike for a volunteer driver to get to my area. At first, I felt guilty using the service when I had my 17 year old son to drive me. I worried by using the driver program it would take a ride away from someone else. Then I felt guilty about depending so much on my son who to me was still a kid. Looks like Im quite a worrier, huh! After I recovered from my first round of OC, I applied and became a volunteer driver myself. It was a great experience helping others get to their appointments. Some patients talked, others werent feeling up to it which was ok too. Right away I found by helping others, it also helped me. I was able to come to terms with everything I had been thru and get a better grip on always feeling guilty. The ACS has other helpful programs that will help cover transportation costs and/or pay for out of pocket prescriptions. Anyone in the US who has been diagnosed with cancer should call ACS (they open 24/7) and inquire about whatever they could used some help with.

Hi Dizz,

I hope you're still doing well.

The tongue twisters thing is a great idea. I plan to look into it when he feels more up to it. Only one more week to go....

Ohhh, Ok. I see. They did the same thing with him except they used skin/tissue from his thigh instead of his abdomen. I didn't even think of that... I knew you guys had a lot of the same things done during your surgeries so I kept thinking why would they have cut her there??. Duh... Don't know why that never even occurred to me.

Well, after the week is through, I'm not sure what the next steps will be. His burns on his neck are pretty red and he is having a lot of mucus/saliva but at least there haven't been any setbacks so once this week is done, hopefully we can begin working on getting close to a full recovery. I'm going to try to get in touch with his surgeon and find out when his next appointment will be, next steps, etc... I know he is just focused on getting through this radiation/chemo right now but I would like to at least have an idea of what to expect.

I hope you've still been able to get out and about as you like. Best wishes!

Pam

Oh gosh Pam, I thought I'd replied!

I'm glad he's not had any setbacks. My only one was last weekend when I totally underestimated my energy level v food intake. I didn't eat enough and then my energy dropped so low I got shaky and could barely climb the stairs. It took me a good few days to recover. Plus my magnesium and potassium levels dropped, which didn't help. I'm back up now though, I'm on magnesium for a few more days and then I should be fine.

I've been attending my radiotherapy (RT) sessions but I've not been walking as much as I had liked because of the tiredness. I'm gutted about that. A friend of mine who has cancer has said that he now identifys as a Sloth because he has slowed down so much. I can see exactly where he is coming from and I think I'll be identifying as a Sloth too from now on

My skin is also red and I'm peeling in a couple of places. I'm gently washing the area and applying cream, which is so soothing (I keep it in the fridge for extra soothing). I've just started using the feeding tube for nutrition (Ensure plus) as my mouth is too sore to eat. I can only drink cool water as it's soothing. I lost my voice for 3 days, which my husband can honestly say he did not like (nagging ahoy!). I can sleep so much if it wasn't for the mucus that builds up at the back of my throat causing me to clear my throat or cough, so I've been napping.

I have 4 fractions of RT left. I will be finished on Oct 31st. I cannot wait.

My husband has gone away for the weekend. I was meant to be at my sister's but I just couldn't make it. Instead I'm at home enjoying peace and quiet of being on my own.

How is your husband doing?