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

Morning

It sounds like you have a busy weekend planned hope CD unit goes ok I'm a disaster putting things together the wi sounds fun though, its the 19th you go to doc's isn't it hope that they can get you on the road to recovery as soon as possible, feeling an lot better today so think I may tackle some cleaning I'm still in the thinking phase lol

Hope you have lovely day xx

Hi see you have met another friend Bobby that is good - great to have as many friends as possible to discuss things with. 

Turned out my day is one problem after another lol - that is because i was expecting a day of fun hahaha should have guessed - anyway have no sorted out the problems and await my zoom talk. 

boy it is perishing cold outside took Pedro to the field and saw a metal detector looking for bits and pieces = cant say i was hugely impressed the only thing that interested me was a tiny farthing coin. Pedro just sat down and patiently waited he was not impressedd either! we wont bother in investing then he said he just keeps everything to himself so i was a bit peeved as the owner had stopped us walking on the field but then said he could dig it up and keep the findings - something does not compute perhaps she does not like our dogs? 

going to be frosty tonight and cold again tomorrow that will be fun the neighbours want us round for the outdoor barbeque with me in PPE lol wrap up warm me thinks! 

caught the two fatty pigeons havning ruckus in the hedge - more interesting than my measly seeds i think at the moment. 

have good evening 

smile and stay strong x

Yay the sun is shinning and what a wonderful surprise to hear from Al so thrilled to bits. 

Alli hope your having a good sunday.

Hoping the sun is not to deceptive since we are suposed to be going next door for a BBQ the first time me and hubby have been out except for doctros etc since Christmas and even if it is next door it will be nice. Still a bit dubious about meeting people incase i could be infectious, but it is outside so should be ok. 

think i over did it yesterday had a headache all night so that made me a bit hypertenisve this morning - am suposed to be testing for a week twice a day already forgot last night and only 2 days ion lol - useless!!! so i am sitting in bed writing this with morning cuppa recovering before i get up and guess what a huge fat pigeon has arrived lol.they maybe vermin but they are quite handsome. I am surprised he did not knock over the bird table when he landed! He is now stuffing his face - good. 

The nintendo arrived yesterday with the ring game - totally extravagence when we really could use the money on more sensible things like a skip, house etc but it  has already brought abig smile to the hubby and that is good to see him interested in something. i wanted the ring because i need to try and get some excersices done and refuse to do them to stupid people telling me to do this that and the other when i physically cannot so as this is moving the ring to do an adventure game i am hoping i can get round some of the moves with this! should be hilariously funny watching me try. I must at this point mention I have spinal stenosis in my lumbar vertebrae due to herniated disc i did at work years ago and arthritic hips, hands lol bit of a crock really lol. 

job fir this morning if i can manage is to get the cd shelving unit made hmm maybe a tomorrow job. 

well enjoy the sun and keep smiling and stay strong x

Morning

Hope you are feeling well today, sounds like your neighbours are a bit mean never mind you might get the last laugh if the metal detectors dig up a Roman haul or something and they have said they can keep it, how did the barbeque go hope you didn't get frostbite it was chilly yesterday just realised I said Nintendo wi and it was a switch you said my brains turning to mush I keep blaming the menopause lol, all ok my partner Gary brought me a bird table yesterday so I'm quite excited as we are going out later to buy tasty treats that will hopefully tempt the wildlife, I was looking up tonsils cancer with hpv and Bobby popped up so can ask about treatments and stuff unfortunately he has had to have more lymph nodes removed as its spread a bit so hoping he gets the all clear now, have you anything nice planned today hope you have a good day

Alli x

Hi

Sorry was a message behind and was answering yesterday's thought barbeque was yesterday told you brain is rubbish, hope bbq goes well but wrap up is Al ok I can't get back on there to see how his treatment went hope he is ok still trying to navigate this website pretty much just answering messages that pop up on my emails ill get the gist eventually lol x

Hi

Alli know about the menopause lol have gone throughthat early for various reasons but have only just started with some hot flushes lol typical! 

glad to hear Alli you have a bird table you will have to let me know what you attract so kind of Gary. Sounds like you have a good guy there. 

As I said brilliant to have more friends who have similar things but you have to remember each persons treatment will be slightly different and you will all react in different ways. Al is ok thanks for asking he will be pleased you asked and will no doubt tell all about his treatement etc when he is able to get back on here. I thought your lump was base of tongue not tonsil? or was i having a moment too??? 

So funny weather looked lovely this afternoon so we went next door with the idea that the BBQ would be nice and not too cold - heater on and a firepit looked good food cooking away nicely and all going fine enjoying it until the clouds came over and the sky darkened then suddenly hail storm!!! we courageously stayed put for about 20 minutes before beating retreat into their conservatory! 

it was a good relief from building the cd shelving unit that heard a lot of swearing! rubbish design and rubbish fittings too fiddly shelves would not stay together easily an utter nightmare!!! will not get a good review from me thats for sure. poor hubby he had a moujthful from a stressed me! and i then had to eat something because i felt sick afterwards. however, it does look nice and will look better when i remove the excess glue i had to use to help attach indiviudal pigeon hole units. iam glad it is done and dusted. i think i could have lived up to the ideal true menopausal woman!! 

hubby and i have decided nothing tomorrow we need to rest. 

Al rest well

Alli stay strong and dont think about the meeting any more until you need to. Enjoy the bird table.

keep smiling x

the sun is shinning again today yay the fat pigeons have been about lol. Am curled up with the dogs and cats having preverbial cuppa and taking it easy as i was up all night so am really tired now,. poor hubby got him up several times too, will make it up to him with a game later. 

Al hope you can enjoy some of the sun

Alli hope the bird table is set up for you to enjoy.

have a good day keep smiling and stay strong x

Hi

Hope your having a nice stress free day today I'm very impressed that you did the CD unit well done I have to get my daughter to help whenever we have to do flat pack the instructions are double Dutch to me, sorry the bbq was a bit of a wash out the joys of British weather eh still its nice to do something different, after the camera last week they found the tumour has gone from my tonsil into lymph node and attached itself to my jaw so chemoradiation I think will know we'd after mdt meeting, spoke to my gp this morning and he said it looks positive as I'm in good health so fingers crossed, Gary's lovely we don't live together but have been a couple for 15 years he's been a star keeps buying me goodies to keep me eating which I'm not sure is a good thing lol, I think the bird table might be a bit close to the house as like you just a wood pigeon that kept sliding down the side until it realised it had to get inside to get the goodies so will move it later as have little hooks to put on to put the hangy things with seed in on, how's the Nintendo going hope its fun 

Have a fab day

Alli x

Good morning All

Its so good to be back out of the rabbit hole that I fell into :)

And what is even better is to come back and find that this thread is running stronger than ever!  Thank you Elona for your time, thoughtfullness and strength in keeping this thread live.  Your messages have been a saviour to me.  It's great to come back and find so many amazing people on here.

I will run back through the thread and introduce myself and catch up with everyone over the next couple of days, so much to read!  And of course bring the blog up to date....  So much to do!  So much has happened over the last 4/5 weeks.  It's amazing to see so much positivity.

Right I am off to do some much needed work on the blog.

Everybody stay strong, be positive :)

Al' x

Hi All

Just reading back through the last couple of days threads and noticed  Wood Pigeons mentioned, I had a big fat Wood Pigeon visit me out in the garden yesterday.  Never before have we had one in the garden, but he/she came right up close...  Must be a sign :)

Hi All

Just reading back through the last couple of days threads and noticed  Wood Pigeons mentioned, I had a big fat Wood Pigeon visit me out in the garden yesterday.  Never before have we had one in the garden, but he/she came right up close...  Must be a sign :)

hi Al and Alli 

what a lovely start to the day seeing messages from both of you. 

the sun is out again and after i have spoken to the mortage man i can sit back and enjoy the day. 

yep the fat pigeon came up again. - my bird table is actually right up against the window and has not deterred the pigeon, a jackdaw was a little more dubious last night but came close. they are nesting in my reduncdant chimney pot. 

Alli - dont stop GAry getting you all those lovely things what a star you will want those brilliant things to keep that weight on and keep you smiling. 

seem like tonsils have a lot to answer for lol my condition spread from the tonisl into surrounding areas too. that is why i still have three areas in neck left. glad outlook is positive. 

so thrilled Al you are obviously feeling brighter and better sound nice and positive and am thrilled you have finished this treatment. take time to recover and re energise before you get stuck into too much. we want you better ! 

hubby caught ggrandad mini mafia running into next door yesterday he said he was quite busy and looked like he had enjoyed the party but disappointed nothing is left over. we have to clear the carport soon and make sure it is mini mafia prrof but i look at it and do not have the energy yet - one of those jobs you put of !!! 

the cd shelf was a nightmare then hubby said he would like another one !!!! what ! my brain has screamed aaaahhhhhh. another job to put of for the time being. 

think today we need to soak up some rays and enjoy the sun get thos endorphins and smile a great healing process.

keep smiling and stay strong x

Morning

Hope you had .a better night sounds like you need to conserve your energy for the next diy task lol you obviously made a very good job of CD unit for your hubby to want another one, all good here have moved bird table further down garden and sprinkled seed on floor around it and have had a blackbird eat seed off floor but completely ignored bird table at least the bird foods ok was starting to wonder, the sun is lovely so thought I would go for walk later I'm trying to be as healthy as I can apart from the goodies off Gary it would be a shame to waste them lol, how is the hedgehog book going my neighbour was telling me she made the top of an old birdhouse into a hedgehog house and had a mum and 2 baby hedgehogs in it I think that is my next project a hedgehog hotel

Have a lovely day

Alli x

Good Morning Elona :)

Hope all is well with you this morning.  I am feeling better each day, my blood counts must be on the up yay!

With two cats we dare not have a bird table, which is sad as I grew up watching a myriad of our feathered friends from Pigeons to Woodpeckers...  Plus the odd cheeky squirrel.

Elona have you ever grown sprouts?  I planted some seeds in flat seed trays just a couple of days ago and placed them on a south facing window sill.  Starting them indoors.  They have gone absolutely crazy!  They have pushed all the soil up like a muffin in the oven, loads of shoots have come up already.  Should I transplant them to pots?  Bare in mind they were only planted a few days ago.  We do not have any type of greenhouse and the weather is too up and down to transplant outside.  Even my herbs are still indoors.

We have some friends coming from England to visit on Sunday, so yesterday we were busyspring clearing the garden, new solar lights up...  so many lights.  My amazing wife has a big delivery of plants coming this week.  She bought me a very colourful metal solar Peacock yesterday.  It shines feather patterns on the walls at night.  We needed a new bench for the front garden, but could not afford one.  Wife has a light bulb moment, you know how we like to repurpose.  We had an old day bed in the shed so a lick of paint and a waterproof matress cover Boom a new bench!  looks so nice I will have to chain it to the house.  We got lucky on FB Market Place too, we found a matching metal and glass table for a tenner.  Just getting outside and doing things is making me feel so much better and I am sure is speeding up my recovery.  Just have to be careful not to burn out.

Who are mini mafia?  I have missed something whilst I was away lol.

Sun is shinning here today in the valleys both outside and in my heart.  Can't wait to get out into the garden.  Hope that the sun is shinning with you too :)

I hope that today is better than yesterday, but not as good as tomorrow.

Al x

Morning Elona

How are you today hope you are ok, have had a bit more interest in the bird table had a couple of wrens and I think a blue *** the only trouble is its that far down the garden now I think I'm going to have to get binoculars lol, all ok her a I'm just waiting for call from Macmillan nurse to tell me mdt meeting outcome so had a bit of a restless night, the sun has come out again so will try and persuade son to do a bit of mowing while I tidy and weed, hope you have a nice day planned

Alli x

Hi Al and Alli 

morning to a sunny day looks cold and brr it was last night freezing! but it looks lovely today may try and get outside for a short while. 

love hearing about all the veggies being grown i love growing things from seed it gives such pleasure seeing the tiny heads peeping through the soil and emerging into the daylight. then eac day seeing the small seedlings grow bigger anbd bigger, stronger and stronger. 

AL i would ot transplant until the seeds have grown to about 1.5 times the depth of tray or you can see the roots well. otherwise it gets a little difficult. if they are growing too tall and 'leggy' you mayneed to give them a little real air by putting them outside in the sun during the day for a few hours to harden them of and encourage some root growth until they are older and redy to produce. 

some herbs are hardy like rosemary and some thymes so even in wales should be ok outside. 

Alli i decided not to grow tomatoes this year as i get over run with them and currently have 5 tubs of tomatoes sauce in freezer! they are though a good plant to grow and you can grow in any good compost it does not hvae to be tomoato compost; start in a smallish pot that you buy it in then when you see roots at the bottom of the pot replace with one twice the size. you dont want too big an pot at the end or all growth will go into roots not tomatoes. whn it grows get a bamboo stick to hold it up and gently tie it to the stick belwo a stem so it does not slide down and you will get a nice tall plant. you will need to pick out stems growning between arms but can advise later on if you want. 

ahh hedgehog houses have five in the garden - three in outside area and two in rehab area. not in usea tmoment but the feeding area is. miss my l;ittle prickly friends but dare not have them back yet. have written chapter on equipment for hospital just deciding what next. have also written introduction to research paper. 

Al mini mafia is the rat population lol hubby makes stories about them for me because there is obviously a good rat run underneath the houses here and we get tunnels emerging and sometimes little mafia appearing. 

Hubby informed me last night gradad was a bit tipsy because he had found out two niece were pregnant ! i told him to let him know not to get too excited as they will have to move on. 

going to take it easy today hahaha.

oh i have a butternut squash emerging thankfully i realised the silly seed was growing the wrong way so had to help it a bit not very intelligent!!!! quite a few celeriac now and sweetcorn but diasppointed with plug plants a quarter of them are not doing well. i suppose that is the risk you take with these. think i will get enough though to make a good display. 

anyway keep smiling and stay strong soak up the rays! x

Alli - love the birds on your table yay!!!! enjoy xx

hi 

bit of a duller morning but thats ok over did it yesterday and feeling it. keep saying mellow day thenkeep pushing myself  sometimes a bit too much. for instance i dismantled  half the old hen run yesterday lol

listening to the news this morning does not bear well for my appointment all those people still waiting on procedures and surgery wow, (4.7m) scary for them. 

Alli fingers crossed you hear as soon as possible after your MDT - i had to wait until friday to hear from mine. 

Al hope your getting some rest and not doing too much too soon, after getting better. take it easy andlet body do its work. 

in door jobs today and perhaps a little fitness on the nintendo ring lol (i should say i can only manage 2 minutes at the moment but that two minutes is fun!). i also cheat !!!! i cannot squat due to my back so i sit down on a chair lol, i cannot run so i fast walk because me leg goes so it is all about adaption but i did like pplatform games or sonic when younger and this brings the child back. a couple of minutes of fun is worth hours of nothing. 

started another chapter on hedgehog book about the diet. and nutritional properties of insects and found an interesting research on insects as human food - yuck!!!! i dont mind trying many things but not sure about eating insects. hmmm what next!  - mind you i watched master chef last night and dont fancy trying sweetbreads either - the texture puts me right of. 

i saw the blue *** couple last night was really happy they have not been into the box yet it maybe because i have taken the run down there or is still too early for them i dont know but lovely to see them in the garden. hoping eventually i will get a more bird friendly garden but the baby trees need to grow up a bit more so i can put some more bird boxes up. Pigeon visited again this morning he is not scared of the table and where it is so pleased even if pigeon he is quite handsome. 

well must stop being too lazy no wonder there is no day left by the time i get up - mind up am up at 4am for meds so my exscuse. !! 

take care keep smiling and stay strong x

Alli - try not to worry - distractions needed today because whatever you do will not change outcome, and your interest is their purpose. they will choose the best course for you. positivity needed. thinking of you x

Morning

Another sunny day so will get tidying done in garden still have a pile of leaves to rake up, hope your ok Elona and not trying to do to much the Nintendo sounds fun I think your more likely to do exercise when you enjoy it I don't understand people's obsession with the gym, maybe I'm just lazy lol, Al the day bed sounds fantastic and will be a lovely place to chill when your friends come to visit and hopefully we will have some lovely weather soon, the Macmillan nurse called after the mdt meeting and said they were going to give me the chemoradiation and its curative so was very relieved, she thinks it will last for 7 weeks and will be daily and I can get transport there and back as I don't drive and Garys back at work now so that helps, don't know the details yet she said I'll have an appointment with the oncologist next week, Al how does it work do the sessions last long I think its 3 lots of chemo and the radiation is every day, the bird tables been busy the Mrs blackbirds stopped patrolling around the bottom of it and decided to try it out its obviously the new place to be and the birds are bringing there friends its lovely to watch

Hope you have a lovely day take care

All I x

Brilliant news Alli and wow that was quick they are obviously on the ball where you are. Think Al got this telephone call the following day. what i suggest is to enjoy yourself now and relax for a day or two then plan lots of things to keep your spirits up and soft food very tasty to help those taste buds last as long as possible. Also high calorie food easy to eat - sloppy. remember keep smiling and whenever you are too tired just read our posts or sleep we will be here. 

the sun has emerged here eventually but it is cold have loads to do and geting frustrated not being able to do anything when i want. did clean a little bit of my floor in dinning area and cleared a bit more of the hen run. I also managed two minutes on the nintendo lol but they introduced a different exercise so have to work out how to do it another way lol. 

So pleased your bird table is a huge success have you got your binoculars yet? lol. 

Al you and your wife are amazing inventive sounds great and lovely to have friends over, something to look forward to and entertain in your lovely sounding garden. the peacock sounds beautiful. Your wife has good taste. 

it is going to be abeautiful evening shame it is still cold. 

keep smiling and stay strong x

Hi Alli

Good news that it's curative :)

Mine too is very curative and I was given a 6 week treatment course of chemoradio, which I thought was the max that they could give.  I would go in early on a Monday for potentially 6 hr Chemo, my chemo was cisplatin.  I say potantially as depending on how well the chemo went, sometimes the machine would keep stopping and you have to wait fo a nurse to start it again.  If all went well chemo would be closer to 5 hours.  After chemo on a Monday I would then go to the radio department.  Radio was over very quick and I actually found it quite relaxing and theraputic.  The hospital is 20 miles away so the whole day took around 8 hours from home and back.  When you are closer to your chemo I will give you some tips on making the day go quicker.  I was worried about sitting there for 6 hours, but to be honest the day went by really quickly.

Tuesday, Wednesday, Thursday and Friday I would travel to the hospital for radio.  The radio itself lasted from 10 to 20 mins, but with the travel the day took around two and a half hours.

Pre treatment I had to see a restoritive dentist and go for a mask fitting. 

The restoritive dentist looks at your teeth and looks into the future.  He/She has to decide if any of your teeth are likely to need removing for the rest of your life.  If they decide that this is the case they will remove them pre treatment.  I had 6 teeth removed.  The reason behind this is because the radiochemo/chemoradio can destroy teeth that aren't strong.  If this happens during treatment it can cause a lot of problems.  Hopefully you won't need any removed.  I now have a strict daily teeth cleaning regime.  I have to use prescription toothpaste and this is for life.  Also my own dentist is no longer allowed to remove any teeth.  If they feel any need removing I have to go back to the restorative dentist who will try and save them.  if you do need to have any teeth removed it may put your treatment start date back a bit.  They have to wait 10 days after removing any teeth before starting treatment to give the gums time to heal.

The mask fitting was like a spa day, I can only imagine as I have never actually been on a spa day.  I found it very relaxing.  They warm the material up and then mold it to your face where it hardens.  The mask is to keep you in position on the radio machine.  It has lots of holes in it so you can still see and breath.  If you are at all claustophobic I would tell them.  They can't do enough to make you comfortable.

I also went in for an op to remove my good tonsil and take some biopsys prior to treatment.

I only completed 5 of my 6 chemo sessions.  Prior to my 6th I felt that my body could take no more, I took advice from my MDT and they were happy for me not to complete my 6th.  They did say that there was a good chance that due to bloods I wouldn't be able to do the 6th anyway.  Today I still feel that that was the right decision.

They will probably talk to you about having an NG Tube fitted at some point during your treatment.  I was determined not to have one fitted.  I felt that it would be a battle lost.  However around the end of week four I had lost too much weight due to not eating properly.  This was down to loss of taste.  They talked me into having an NG Tube fitted. I could have cried, but better to lose a battle to win the war.  I had it fitted and now it is the best thing ever.  Without it I would never have been able to fight back as hard.

With regards to weight there is no ideal weight that you can go into this with.  They will weigh you at the beginning and then you'll have a percentage that you can lose before they start to worry (you may have to ask how much you can safely lose).  losing too much weight not only means you are not getting enough nutrition but your mask wont fit properly. I spent a bit of money on some scales so that I could keep an eye.  My scales matched the weights at the hospital.  I did go for a lot of walks to improve my fittness pre treatment, and carried this on for as long as I could during treatment.  We also invested in a rowing machine to help with fitness pre and post treatment.  I am not a gym bunny by a long shot :)

Alli there are loads of bits of advice that I can give you, but this post would be a book long :laugh:  As you reach each step I will  tell you what happened. helped, didn't help me.  Do keep in mind that we all react to the treatment differently.  What I will say is never be in pain, if you are in any kind of pain let them know and they will sort it for you.  

I hope that this has helped

Stay strong

Al x

morning 

AL you are quite amazing reading what you have told Alli the fight for fitness and eating etc. The journey has been fought through sheer determination I can see. I am so glad you are through this and able to help others now. 

I hope everyone has a good day today the sun is out again. We had some rain yesterday but not enough to water the plants. However, good news some butternut squash are emerging they just needed a push and a talking too! Al has your wifes plants arrived yet? My little plugs are struggling to cope half of them seem to be pulling through the other half are battling the battle of survival too. 

Have made a list of questions for my doctors for monday so am going to print a copy of and drop it of at the doctors so they can get an idea for monday dont want to speak to someone with no knowledge. Managed to find a paper on necrotising granulomas in the head and neck which was quite interesting. Unfortunately did not say about management. My lump is being christened Fuego -spanish for fire because thats what it feels like when it gets inflamed. 

right had better finish my cuppa and get myself motivated for the day! 

keep smiling and stay strong x