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?