H

Had results today from biopsy on tonsil and now know its cancer, its all been really quick what with scans and hospital visits so not really had time to think about it now it's just starting to sink in but I'm pretty positive, I'm told its spread to a lymph node has anyone else had this 

HiAli

I am sorry to hear your diagnosis, but the first thing I would say is there is always hope. Al my friend here has the same and is currently undergoing all the treatment. He is having a six week course of radiotherapy and chemotherapy over most of the week meaning daily trips. The first thing they have to do is make sure you have no teeth that will get corroded by treatment so need removing first,. They then measure you for the mask this apparently is quite comfortable. They then arrrange the neginnings of the treatment. It will not be easy so you will need a good support system around you - family, macmillans, friends especially when you have down days. Some people loose taste buds during treatment some can find swallowing hard but if you look back on our talks there are mouth exeercises to do. 

Find all the exciting food things you love that are highly flacoured and stock up you will need to keep your weight up and need things that are exciting to make you smile. 

good luck i am here is you want to talk. 

stay strong x

Hi

Sorry its been a while I do my posts and emails on a kindle I'm a technophobe lol I don't have a fancy phone and managed to leave it in Gary's car yesterday so only just got it charged, how did you get on with Pedro Elona did he let you walk him on the second attempt, sounds like your not taking it very easy hope your feeling well and not overdoing it although the fireplace sounds like it will be lovely when its done I love all the original features so I would be itching to get it done to. Mini mafia are definitely hatching a plan be prepared it may be the calm before the storm and grandma may lead the troops to make sure there's no fisticuffs in the ranks lol. Only a few days to go till treatment getting a bit nervous more that it might not work but trying to put them thoughts aside. Hope your ok Al and on the road to recovery hope the lovebirds are doing ok 

Take care Alli x

Nearly forgot I think we have got all the rain Elona we had a bit yesterday but today its been torrential and windy to, hope tomorrow s nicer maybe you might get some rain soon it's certainly gave the grass and plants a good soaking x

Hi Elona :happy:

OMG!  I, and I am sure others, enjoy reading your 'blatherings'.  They are a much needed relief from the trials and tribulations of living with cancer.  I couldn't imagine this thread without you, actually this thread would no doubt have finished weeks ago without your wonderful, thoughtful posts and replies.  You may not be living through cancer, but you did go through all the tests, biopsies, witing for results etc.  And the end results may not have been cancer, but the stress of the wait was the same and they did diagnose you with a life changing illness.  So many people go through tests for neck cancer to be diagnosed with something else and they need to be able to read posts from beautiful souls like yourself who have also been through the same.  You have certainly helped me through this, for which I will never be able to thank you enough.

Well I've had a very quite Bank Holiday.  The weather has been rubbish so just been rattling around the house finding things to do, we even ran out of disasterous disaster movies to watch.  The good thing is the plants have had a very good watering from the heavens.  We had 50mph+ gusts down the valley last night, lights flickering.  Sounded like a freight train, a few trees down and many pubs lost their parasols etc.  We will be venturing out to put bits of the back garden back together today, fortunately no damage just things where they shouldn't be.

I was thinking about, amongst other things, the lack of being able to post pics here.  And was wondering what the interest would be in starting a private Facebook neck cancer journey group.  People would have to ask or be invited to join and only members would be able to see and write posts, comment etc.  What do you think?

I'm eating a bit more normal food each day, I even had a Happy Meal burger on Friday!  No sauce and couldn't eat the chips.  The most amazing thing was yesterday a few sweet taste buds started working!!!  All looking good to having the tube removed before the 15th.   Only eating around 500/600 cals a day at mo, so still having to top up with the tube feeds.  But heading in the right direction :happy:

Right I'm off to put the garden back together.

Be strong

Al' x

Hi Alli :happy:

I think I had my tattoo on the day that they set up the radiotherapy machine.  Throat is still painful, but improving daily.  Slowly eating more normal food each day, only around 500/600 cals at mo.  Still having to top up with tube, but heading in the right direction.  I'm having days of energy, seems to be a pattern at mo of one day completely fatigued and sleeping a lot and then two days of relative energy.

I am both slightly nervous and excited about the prospect of baby Love Birds.  It's not uncommon for first time parents to have issues.  If this happens the babies will have to be hand reared which is a lot of work.  Hand reared however do make better pets and do well as single birds.

I was thinking about, amongst other things, the lack of being able to post pics here.  And was wondering what the interest would be in starting a private Facebook neck cancer journey group.  People would have to ask or be invited to join and only members would be able to see and write posts, comment etc.  What do you think?

How are you feeling with regards to treatment starting this week?  Do you know what chemo you are having?  I had cisplatin.

Hope you have a great day

Stay Strong

Al' x

Afternoon, but late today man delivered compost for garden and Pedro wanted attention. 

He was abit better yesterday on his new front lead harness but did put the brakes on in the new estate. I think it ws actually due to the high winds that spooked him. He is now resting nicely curled up next to me unawares that he will have to try again later! the front harness did work though it did make him walk closer to my side than before which was good. 

Thanks Al for your kind words I needed them. 

I think facebook maybe a good idea but i would check with the administrators first that they woulod not sensor ths pictures. They have been a bit daft recently with some of the things they are not allowing. I have made harmless comments and they have been denied. The other thing would be to ask questions to the people who want to join otherwise we could get anybody. The other thing is as administrator unless you want someone else to also do it have you time and energy?

AM thrilled Al that you are eating and 5-600cal not bad start and a burger lol what a start!! I find some things still get caught in the back of my mouth on occasion so this may always be the case now. Hope the pain starts to ease soon. 

Alli try not to get too nervous about thursday we will all be thinking of you. I am sure hopefully all will go well. Try as many distractions as possible beofe then. 

Mini mafia junior was out again in the carport last night we suspect he has been left there on guard to report back with any changes until the time has come for their retalliation. Grandma will certainly have a say in what happens. 

Al it will certainly be exciting to see baby love birds sounds like you have had experinece with them before. They are beautiful birds. 

Boy it sounds like we have all had the wind. It certainly has been singing its way through my garden and lifte a parasol here too - not far thankfully but shows how strong it can be. Bet it was bad down in Wales. Valleys do seem to get the wind gusting through. Have not cheked on my plugs yet. At least the sun is trying to shine through. 

yay finished the wall and painted the window this morning so floor to finish now then fire place and coving lol. Will be good to get that done. One bit at a time lol. 

have found a foreign disaster movie called the wave on Amazon pretty good. (norwegian i think about a flooding). 

keep smiling and have a goo day x

Hello

Al that's great news that you are starting to be able to eat again I hadn't realised that tastebuds could come back so soon so it gives me hope, haven't had a McDonalds since before the lockdown so will maybe be able to have a big Mac when all this is over if I can open my mouth wide enough that is( I'm sure ill find a way lol). Sun is starting to come back out again so have retrieved the recycling that was strewn all over garden only one casualty one of my green bunny garden ornaments lost an ear but I managed to glue it back so he's nearly as good as new. Good news that Pedro's getting used to the harness Elona, it sounds like your going to have the room done in no time just don't try to do to much. I don't go on Facebook Al but if we could sort it I'd give it a go. Im not feeling to anxious at the mo I've been keeping busy  doing cleaning and jobs around the house and yesterday the kids set the tv up in my room and I can get catch up on it so I may get so comfy in there I won't  want to come out

Take care and enjoy the rest of your day

Alli x

Hi Al

Forgot to say the chemo drug I'm having is called carboplatin, they are giving me this as I am partially deaf in one ear and have tinnitus so some chemo can make it worse according to doc x

Afternoon, 

raining nicely here - good plants still need a lot, even the little plugs i have just transplanted this morning. Its good to see that i have not killed of all the plugs lol. 

Rum tum managed to scare of the pigeons from the bird table today he gave them such a fright poor things hope they come back later. Birds cannot see glass so they must have thought t=he was just about to get them. Mind you they are fat so they could do without a feed now and then lol. 

Gandapa mini mafia is going senile! he thought the fake funeral procession was a marriage and started doing a jig on top of the coffin. He then got incredibly drunk he got into Aunt Agathas bed who was not amused. Grandma gave him a right talking to but he just laughed it off. Consequently the whole protest turned into mayhem and nearly everyone got drunk falling over each other laying around showing their tummies and long tails caught up uin each other that when they stood up they fell over again. no wonder the plan has not been decided yet they are still suffering and untangling each other. The two on look out Junior and cousing are not amused having to miss out on all the fun. Grandma told them that until they are old enough to be their own bosses they have to follow the rules whether they like it or not. 

Glad Alli you managed to clue the ear on your garden bunny. Thankfully we did not get any damages, but the garden is at the moment quite a mess having taken down the old chicken coop. A skip arrives tomorrow so we should be able to get rid of a lot of rubbish then. Hubby will have to help. We have a plan he carries things on his lap and i wheel him it works well. some of the larger things like the chicken coop and run i may have to get a neighbour to help. THe one good thing about being ill this year is being able to do the house and garden lol. It amy take four times as long but i probably would not have been able to do if i was still working. 

how are your plants Al.

Pigeon is back for second attempt this time Rasputin has his eye on him - stupid cat he cant get him either!!! 

take care all keep smiling x

Hi 

I love the mini mafia stories Elona they make me smile, looks like you have the rain now hopefully without the wind, I know what you mean about the wood pigeons they are so greedy they never stop eating they are so big when they are on the bird table no one else can fit on lol, 2 new visitors a magpie and what I think was a blue *** which was exciting. Hope you are ok Al and still managing to eat more solid food how soon did your taste change when you were having treatment, I've bought more soft food today so think I will be ok. I'm having a rest now been cleaning for 2 days and im shattered I've been getting breathless lately which is a scary sign trying not to worry, treatment tomorrow I think im as prepared as im going to be. Don't overdo things in the garden Elona good idea to get neighbour to help 

Enjoy your day

Alli x

Hi Alli :happy:

Thinking of you today.  With the chemo all you can do is sit or lay back and relax (sometimes I was given a very comfy recliner chair or a bed).  The drips are plugged into the mains and on wheels, but you can unplug them to stretch your legs or use the facilities (one of the nurses should show you how to do this).  Then once unplugged you learn to dance with your drip, Strictly will have nothing on you by the end :happy:

Both Chemo and Radio can affect your taste buds, taste receptor cells.  I had my chemo over 6 weeks and it was around week two that I noticed changes with my taste.  Once my taste started to change I lost it very quickly, within a few days, all taste was definitley gone by the end of week two.  It wasn't just the taste, textures of certain foods became difficult to eat too, this was due to changes in the saliva.  Not everybody has such drastic changes to taste.

I have been very naughty and not used my tube for two days now, this is not what was discussed with the dietician :devil:  My thought was to make myself very hungry by not having tube feeds.  It worked as I ate my first full size dinner yesterday, two lamb chops and roast veg.  I am starving now and it is only 8am, I have been having a slice of toast with butter in the mornings but today I am going to try porridge.  I've not been able to eat porridge since I lost my taste.  The hardest part is getting all the right vitamins and nutrients which the tube feeds supply.  I may even remove my tube at the weekend. 

Try not to think about losing taste, it may not happen.  Or you may just lose certain tastes.  If you do notice it happening, or you start to struggle with certain food textures tell your dietician.  There are mouth washes that they can give you to help and they do help.  Also a loss of taste can affect your weight.  Some chemo can also affect your appetite, again if this happens tell your dietician.

Most of all relax today, we are all thinking of you.

Stay Strong

Al x

Hi Alli :happy:

Thinking of you today.  With the chemo all you can do is sit or lay back and relax (sometimes I was given a very comfy recliner chair or a bed).  The drips are plugged into the mains and on wheels, but you can unplug them to stretch your legs or use the facilities (one of the nurses should show you how to do this).  Then once unplugged you learn to dance with your drip, Strictly will have nothing on you by the end :happy:

Both Chemo and Radio can affect your taste buds, taste receptor cells.  I had my chemo over 6 weeks and it was around week two that I noticed changes with my taste.  Once my taste started to change I lost it very quickly, within a few days, all taste was definitley gone by the end of week two.  It wasn't just the taste, textures of certain foods became difficult to eat too, this was due to changes in the saliva.  Not everybody has such drastic changes to taste.

I have been very naughty and not used my tube for two days now, this is not what was discussed with the dietician :devil:  My thought was to make myself very hungry by not having tube feeds.  It worked as I ate my first full size dinner yesterday, two lamb chops and roast veg.  I am starving now and it is only 8am, I have been having a slice of toast with butter in the mornings but today I am going to try porridge.  I've not been able to eat porridge since I lost my taste.  The hardest part is getting all the right vitamins and nutrients which the tube feeds supply.  I may even remove my tube at the weekend. 

Try not to think about losing taste, it may not happen.  Or you may just lose certain tastes.  If you do notice it happening, or you start to struggle with certain food textures tell your dietician.  There are mouth washes that they can give you to help and they do help.  Also a loss of taste can affect your weight.  Some chemo can also affect your appetite, again if this happens tell your dietician.

Most of all relax today, we are all thinking of you.

Stay Strong

Al x

Hi Al

Glad your getting to eat more food and the feeding tubes out your sounding a lot better. Was such a long day yesterday didn't get home till 7pm the mask was scary hoping today's better, felt a bit weird last night a bit shaky and headachy but slept ok and feel a bit wobbly today but not to bad, round 2 today

Take care

Alli x

Hi Alli :happy:

Just a short one to let you know that we are all thinking about you.

Stay Strong

Al' x

Hi, sorry to jump in on your posts but have any of you suffered with burns from the radiation, if so how long did they take to heal?  
My husband has 2 more RT sessions left for cancer of the right tonsil and lymph nodes but he has terrible burns which are actually more painful than his throat at the minute.  This, along with the horrible mucus which makes him choke, is really getting him down and I feel so helpless as I can't physically do anything to make it better. I Would appreciate any advice, thanks.

Hi Judy 

I am sorry to hear about your husbands situation and I hope it improves soon. When Al is on he will reply to your thread here. 

No one has mentioned the burns to me but mucus is a *** for everyone it seems and some people react more than others. what has the nurses and consultants said? does he have a tube in? 

The best thing for you is to try and keep his emotions up as much as possible. Try all distractions and have hope that is important. you are probably the most important person apart from oncologists etc in his life and it is not easy on you iam sure so you must also have some you time. if you dont look after yourself and destress then you cant be there for him either. we are here for you to write and keep in touch any time you like. x

Morning,

wow the rain has come down torrendous down pour. I sleep in the conservatory so it sounded so noisy ! yet the animals took no notice!! and are flat out. Thankfully hubby had taken Pedro outside for a play before he lay next to me on the bed. lazy ***!!! (I cant talk). 

the rain will do the plants good but as long as they dont damage the baby ones i had planted. i cant wait to see the colour coming out. iam so pleased with what we achieved this last week. 

Oh my gosh i saw a news report yesterday about a town in New South Wales Australia where the grain had a bumper year and a drought meant the mice had reproduced so much they were running across peoples pillows at night, school desks and where everywhere wow it was amazing and awful at the same time. I am glad my mini mafia are not that bad!! i dont think i could cope seeing and feeling mice creeping everywhere and trying to bite me etc yikes. 

oh sun is coming out thas promising. Mind you a lazy day today is in order - hope you all have a good lazy day too and relax get as much rest as you all need. Enjoy the day do something enjoyable.

hope everyone are doing ok

take care

keep smiling x

Hi Judy

Firstly no need for any apologies, you are more than welcome to post on this thread whenever you wish.  Feel free to come here even if its just for a general chat.  Like Elona said, you need to also make time for yourself.  It's really difficult I know, but try not to burn yourself out with worry and stress.

I really feel for your husband at this time as his body is going through a lot and I know how down it can make you both feel.  It may not seem it right now, but it will get better and easier.

I am just over a month the other side of treatment for T4 Tonsil Cancer (6 weeks radio and chemo) which had spread to nodes and local area.  I was very lucky with regards to the radio burns on my neck,  Radiology supplied me with a cream called Epaderm right at the beginning of treatment.  I applied this three or four times a day to my neck and head for the duration of the treatment and still do now.   The cream definitely helped a great deal.  My wife just reminded me to tell you to keep the cream in the fridge as the cooling helped a lot too.  Obviously do check with your M D Team.  I am hoping that Sam will see your post too as he was given a different cream and went through a different experience to me.

With regard to the mucus, as well as the different mouth washes and sprays, we loaned a nebuliser from the cancer hospital which helped a great deal.  I would enquire at your hospital if they have ones that they lend out as a good one is very expensive to buy.  I have heard that some doctors surgeries also lone them out.

I wish both you and your husband all the strength in the world.  We are always here if you need us.

Be Strong

Al'

Hi Judy. 

Im just about 2 weeks post my last fraction and literally until the final day I had zero burns. My Oncologist was gobsmacked. Then a couple of days later.... Holy breakout!!! My whole neck went red raw and a bit weepy at times. Left with a dry crust which seems to renew daily.. it is slowly but surely getting better... keep up your application of Flamigel or what equivalent they have given you, keep the area clean and it will heal.

I've already noticed the right side of my neck which had the lesser dose is already 70%+ healed..  left is getting there but taking more time.

Mucus is evil, but again, should settle once his radiation levels start coming down.

One thing I am learning is everyone's recovery is different, alot of people have common side effects, such as the burns, the mucus.. from there things will differ, and like everything, it differs from person to person.

Atm, my main after effects are excess saliva (as apposed to lack of!) Which is making me cough up every so often especially using my NG Tube. Along with my neck burns!

I am only 32, and very much used to being in control of my health (and the confidence to deal with others!) And have leaned that this process is one of the most brutal treatments going, that and its a Marathon, not a race.

The side effects will get better but will take time. 

Speak with his Oncology team, Carbocestine and Nebulisers can help Mucus. 

Hello Elona :happy:

We are definitly going to look into the different 'flavoured' Geraniums.

Yesterday was brilliant seeing my other two daughters, weather held out too which was a bonus.  I told them that I have/had cancer and they both took it really well.  They totally understood why I had not told them earlier which was amazing of them both.  If the borders stay the same (Indian varient allowing) we will be seeing them again at the beginning of June. :happy:

I was absolutely shattered yesterday, but thought thats's ok it's Sunday tomorrow I can rest.  DINGDONG!  8am this morning!!!  Water company want me to move my car so that they can do works that they were supposed to do last Wednesday.  It turns out that it wasn't to get to the area they were working on, it was so that they could park one of their vans!   Not a happy bunny.

Calm is now returning as I can smell a pork roast with crackling cooking ever closer to being on my plate, hopefully at least some of it will have some taste :laugh:

Have a great day

Al x

Hi, thank you everyone for your replies, we have been applying the Flamigel 3 times a day since day 1 but I think because he is fair skinned it's affected him more, the radiologist says it is how they would expect at this stage and the nursing staff say it's not infected even tho it's raw, weepy and crusty, he can barely move his neck!  They have given him some Flamazene to put on when he's finished treatment on Tuesday and they promise us it's amazing stuff, let's hope so  
The mucus is his other big issue, he is unable to swallow anything apart from tiny sips of tea and even then he coughs and chokes.  He has Carbocisteine and he uses a steamer a few times a day which does help a little.  He has a RIG tube so he's living on Ensure complete and has all his meds this way too.  Amazingly to date he's only lost around 4.5kg.

 This forum has been really helpful for me (albeit absolutely terrifying at times) but I am that person who wants to know everything, I believe that forearmed is forewarned, hubby on the other hand would rather not know what's coming but I do try and prepare him for each stage. Only 2 days to go and we can begin the long road back to recovery
Thanks again

Morning

Well the rain has temporarily stopped and it is a little blowy but not too bad. HUbby is entertaining the Pedro with his kong jubbler and i am stitting in bed as usual with my cup of tea lol (what a lazy person I hear you say! never out of bed lol). 

Sam nice to hear from you (even tho to Judy) and hope the saliva calms down soon and burns too.

Alli hope your ok and coping keep positive x

Judy taek care hope the last couple of days go ok and healing begins x

Al glad your daughters were amazing but then they are part of you so did not expect anything less. Hope you managed to enjoy the pork and crackling - dont like pork but love crackling lol. that will be good for your weight. We have not had a good roast for ages not sure why actually because we both love them. Best bit for me is the crispy roast potatoes yummy!!! 

Al Have been looking at the geraniums and apparently you can also get chocolate and mint scented too. I have a liquorice plant in the garden that is quite amazing it really smells of liquorice. Makes the garden quite interesting. Did all those plants arrive for your wife?? forgot to ask. How is she ? apologies i forget to ask that is rude of me. what colour did she paint the bedroom. 

i tilked the fireplace yesterday - or at least put up the new tiles i had got of ebay for the fireplace. These are victorian flower tiles that came out of an original fireplace but are on the sides of mine. iam really pleased they are very pretty even hubby liked them. we just have to decide what to do to finish of the fireplace - it needs some sort of surround might have to go to reclamation yard sometime that will be fun. 

the mini mafia had a party across the road last night boy were they noisy it was to celebrate the long awaited wedding. It looked like a greek wedding with lots of throwing plates and broken china with drunken family members strewn across piles of food lying flat out exxhausted and drunk! The newly weds left quite early on running up the road (customly to take their lifes in their hands as they have to go and find a new home). There was a lot of cheering as they narrowly missed a passing car. Since grandm and grandpa are too old to stay up late this meant the youngsters could misbehave. they had forgotten to inform the alligators who had come back from America for the occasion that it was across the road so they turned up in the carport and had to be redirected. A cake throwing in your face started at 2am i dont think anyone was left with a clean face! hoping for a quieter night tonight. 

Well lockdown has definately lessened listening to the news hope that the Indian variant does not cause any real problems we cannot deal with any more. I dont understand though when t was obvious Ramadam was not being socially distanced and India were under huge strain from the pandemic that we allowed people to go and come back so they brought the strain back in. Lets hope we get it under control and it does not affect most of us. 

Bengals are play fighting over me now so will have to finish and move before a claw comes my way!!! 

keep smiling x