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 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 Elona :happy:

Sun is shinning here today, glad now to have a break from the rain.  Although I do believe that somewhere in the UK has had some quite heavy snow today!

We noticed yesterday that some of our plugs have been eaten and a tomatoe plant has strangely disappeared, sinister goings on in the garden... Cue sinister music, evil slug stage left.  Can only assume its either slugs or snails, although we've spied neither.  Did you know there is no point in throwing snails over the fence as they have very good homing senses and will find their way back.  And no doubt bring some friends with them.  I do believe that Hedgehogs like a slug or two.  In our old garden we had a big family of slow worms which kept the  shelled and non-shelled fiends at bay.

Voting day today, still have no idea who to vote for.  It's easy to make promises on a shiny bit of paper stuffed through the letterbox.  And OMG!  Did we have a lot of gumph through the door!  Now I know where all the trees have gone.   Think I might just close my eyes and pin the tail on the donkey.  Where is Screaming Lord Sutch when you need him?  :happy::laugh:

Hope the sun is shinning on you, apparently you are in for some warm weather on Sunday.

Stay Strong

Al x

Morning 

Alli - thinking of you today hope all goes well. 

Al thank you you made me laugh cant wait to hear more abiout the sinister movements of the garden it reminded me of tales of the unexpected! 

Hubby and i have decided not to vote today - i forgot to sign up for postal vote as i am still suposed to be shielding and Clacton district does not generally change its counsillors much anyway. We would have definately made the effort if it had been a general election. Hahahha yes we could do with more Lord screaming Sutch!!! 

I think we had a jay in the garden on the hedge/fence yesterday it was hard to see because of the light but it was very handsome. Alli i love blue *** we had a nesting box that was used by them yearly until this year and i think that is because of my mothers cats that were here have spooked them, hope they come back again. 

Standoff with cousin mini mafia who sneeked onto bird table in the dusk yesterday. Was being observed very closely through the windo by Rum tum but cousin was brave and seemed aware that rum tum could not get to it. i had to open the top window to get it to move. Mind you it had stuffed its face by them!! 

I have decided my garden needs some lights so I have seen and am going to recreate a watering can dripping water onto the garden and the dripping water is a curtain of fairy lights. i have ordered a curtain of white lights and have an old watering can just need a post to set it up and we should be ready. Things dont always come out as well as my brain says but we shall see. 

Have good day and keep smiling x

Hi Elona :happy:

I hope Ali is feeling ok, she would have had a long day yesterday.

I love Jays, thay are without doubt one of my favourite birds.  I lived in Hampshire for 10 years and the place that we used to walk the dogs was full of Jays, I had never experienced before so many in one place.  I could sit there and watch them for ages.  I don't think that I have seen one since living here.

We have lots of lights in the garden, every year they are replaced or added to.  I expect you can see our garden from space!  Loving the watering can idea, I may have to borrow that :wink:  I am going to transplant my herbs into pots today, still not going to risk them going outside.  Mind you the sprouts were transplanted outside a couple of weeks ago and they're doing well.

I removed my feeding tube yesterday, 4 days ahead of time.  Watched a 'How To' YouTube video and out it came :happy:  I wont lie I was nervous but it was such a relief once out.  And a lot easier than I expected.

Lovely and sunny here today, not warm though.  A lot of rain heading in from the south west tomorrow so will have to make the most of today.

Stay Strong

Al x

Hi all.

So, treatment finished on Tuesday. Sufficed to say I nearly yanked the bell off the wall

Saw my Oncologist same day as well in Clinic. He has said he's pleased with how I've coped with the intensive treatment (I don't feel pleased but!!!) My outer skin is a bit itchy but Flamigel sorting that well. He also went on to feel around my neck and had a little look inside. Said because things are so swollen he can't necessarily say it's gone but used the term 'I currently have no reasons to think the treatment is working and going in the right direction' so... took some comfort from that.

Throat discomfort isn't toooooo bad. Basic fluids are still a bit sore to go down but having guzzles every now and again, have even been trying some fruit juices but mouth still way too sore.

My NG Tube came out for the 5th time a few days back, tried to go onto Ensures but with the amount of Phlegm rattling around, my tummy just won't have it.. ended up vomming so I drove myself back to my Unit and they refitted it for me. Finding that I can only be in certain positions with it (like bolt upright in bed). Otherwise I get loads of coughing fits, I have to keep them controlled otherwise I end up wretching and we lose the tube!

After treatment they said that I should start getting some improvement After a week or so, but generally varies from person to person. So kindly hoping that the Mucus buggers off reasonably quickly. 

Great to hear on your recovery DF... keep pushing. 

My PET Scan is being booked for in 6 weeks time. So should be 2nd or 3rd week of June. Plenty of time to concentrate on recovering. 

Hey Alli. 

Best of luck today. Alot of things will be overwhelming. Both me and my other half were in tears on the way. Its a scary experience of the unknown that you're embarking on. But remember. There's People out there in your Hospital to help. No question is too much for them.

Before you know it you'll be at the end of it and on the road to recovery.

It seems forever away but you Will get there!

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 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

wow a wet afternoon after a gorgeous morning ! torendous rain but then planted a daphne and the soil was bone dry under a cm deep. Have kepot my little lights on all day outside as the dull sky needed brightening up! boy dont we all need cheering up sometimes but there is always something we can see that will make us smile- we just need to see it. 

Alli i hope that you are coping ok and your partner gives you all the support he has been. i hope the bird table gives you delight in those dark days and you can begin to see the light shinning at the end of the tunnel. 

Sam I hope your ok.

Al hope your not too tired and looking forward to your Euro vision!! (you never know i may even see a bit lol). I bet you are looking forward to seeing your ffriends anyway. At least they are allowed indoors now not the weather for an outdoor cinema occasion!! i can just see you snuggling under a duvet on your sun bed outside with a huge umbrella and tarpaulin keeping eveyone dry lol cccccchhhhhhhaaaattttering in the rain!!! 

I have a very inqusitive blackbird visiting me now. It is a male and very handosme. so i put up a fat square on the grape vine so hopefully he will find that. He is particuarly interested when i do any digging because he wants the earthworms i may find. I love it when they follow you aroudn - brave like the robin. I am hoping that now my mothers cats are not here the other birds may begin to ome back,. there were certainly a few *** and sparrows early am in my orchard area. I also think one of my released hedgehogs may have come back because there was a suspect poo on the ground lol. so exciting if that is the case. i need to fill the bird table again. 

I have had one of those days where i feel that i have done nothing really. i am going in next door to feed their cat whilst they are away for a few days, strted my tax return then decided that was enough for one day! but did make some black forest brownie bites. i made double the amount because i was going to freeze some to take to work then realised i cannot diue to my condition if infectious! so hubby will have to eat a lot of them!! very goey! 

have good day all and keep smiling x