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

Hello

It's been a massive help being able to come on here and listen to all the lovely positive things you say its been a godsend, I look forward to reading about what all the animals are like and the mini mafia, I think your hubby will miss making up the stories about them when they go lol maybe you could get him to write the stories down would make great children's books. Had my appt date its Tuesday apparently it's for dentist scan and mask fitting so a busy day I'm getting transport from them as I don't drive and Gary's in work so I don't have to worry, so looks like the balls rolling now also had pack in post about treatment the chemo I'm having is called Carboplatin. Hope your ok Al and feeling better each day I didn't ask did you lose your hair, can't say I'm that worried you can get some amazing wigs and I would save a fortune on shampoo lol. Good news about being furloughed Elona that means you can concentrate on getting well and not have to worry about work

Hope you have a lovely day in the sun

Alli x

Hello Elona :)

Cor blimey it's hard to keep up with you two :laugh:

I find it hard to get on here every day so for ever playing catch up lol.  Away a bit longer this time, had my second covid jab on Tuesday morning.  Went to bed at 10pm Tuesday night, woke up a few times through the night with night sweats (nothing unusual there).  Got up at 6am feeling blooming awful, flu like symptoms.  Slept on the sofa all day, went back to bed around 9pm on Wednesday.  Woke up 8am Thursday feeling better than I had in a long time, go figure.  We worked out that I slept for 34 hours!!!

Anyway back on the straight and narrow :happy:  Throat has cleared right up in the last week, looks like there was never anything wrong with it.  Tonsil has gone right down as has my biggest node, which looked at one time like I was trying to grow another head.  Throat still very painful though.  My Mum, who was in the medical profession for over 50 years, seems to think that the pain is down to my nerves fixing themselves.  Which makes sense.  Fingers crossed a few more weeks and I will be pain free :happy:  Myself, my Wife and my Mum are going to England mid May to see my two other daughters (I haven't seen them for over a year :sad:).  My target is to be eating enough to have had my tube removed by then.  I have found that I can eat very plain foods, I had boiled rice and a boiled egg yesterday.  Stomach must have shrunk as I could only eat half the rice and two thirds of the egg, wont do much for my calorie intake.  Off to buy some rice puds today.

The flowers arrived, all 125 of them, Yay!!!  A mix of Petunia and Geraniums, all arrived in perfect condition with the words 'Warning Live Babies Inside'.  They also answered a question that I had for you, what are plugs?  I now know as these plants are plugs, every day is a school day.  So easy and fun to plant, can't wait for them to grow now.  Also transplanted my sprouts to outside on Tuesday, going to transplant the herbs today, but keep them inside till May.

Goodness this has been about me, me, me lol.

I can see that your hubby would not be a Eurovision fan.  We use it as an excuse for a party, we love the fact that it is so rubbish and by the time it gets to the scoring we are a few too many sheets to the wind.  Although this year I will be sober, scary.

I am sure that you can make butter chicken with cream alternatives and it'll still be as nice.

Loving the stories of the mini mafia, Alli is right there is a book there somewhere.  I illustrated a childrens book a few moons back.  It was for my late brother in law who sadly passed at the age of just 30.  I still have the original artwork and plan to do something with it in his memory.  Also thinking of writing a follow on book.  Too much thinking and not enough doing.

I hope you are feeling better today Elona, the sun is shinning here again.  If you can stay awake, or you are up between midnight and dawn.  Look up into the heavens and you should be greeted with a meteor show.  One of the best of the year, usually between 30 and 100 shooting stars an hour at its peak.  Last night and tonight are the best nights to watch.

Hope you have a great day

Stay Strong

Al' x

Hi Alli :happy:

Sorry for the delay with a reply to your questions, I was on my back post second covid jab (Oxford).  Slept for 34 hours!  Quite common apparently.

I'll start with your last question and work backwords, easier scrolling up :)

My first two scans, MRI and CT were just head and neck.  Closer to treatment I had a PET Scan which was full body.  The PET Scan is to see if the cancer has 'Metastasised' (Spread) to any other parts of the body.  If you are HPV+ then there is a very good chance that it has not as it is rare for HPV+ to spread further than local tissue, I believe.

With regards to the feeding tube it was discused with the oncologist, although it was the dietitian who talked me into it a few weeks into treatment.  In hindsight I would have had it fitted at the beginning.  Mainly because there is a 99% chance that it will be needed anyway.  The throat and potantially the mouth do become painful and uncomfortable, so getting it fitted early will relieve later stress.  The tube fitting is easier than you think it will be.  It is a bit uncomfortable and scratchy for a day or two, but you soon get used to it.  It quickly becomes part of you and you forget that its even there.  I just tuck it behind my ear and into the neck of a shirt.  You can still eat and drink normally whilst you have the tube.  But at least it's there when you need it.  Also the treatment can cause the flippy flap that stops food entering your windpipe to stop working properly.  If this happens you will definitley be happy for the tube.

I see that you are seeing the dentist, scan and mask fitting all in one day.  It is a whirlwind at this stage, feels like your feet are not touching the ground and so much info to deal with.  Everyone you see will chat to you and give you yet more info laden paperwork to divulge.  if you let it it will make your head explode, we simply got a folder (which is now breaking at the seems) and added the paperwork to it, getting it out to read when ready to do so.  My amazing wife did most of the reading and note taking allowing me to consentrate on getting better.  If you do need to have any teeth removed you will probably find that you will have to wait at least 10 days before treatment starts to give your gums time to heal.  Dentist will explain all this.  

I had 6 chemo, so I have no idea how they do two big ones.  This option was not given to me.  70% to 80% chance of beating it are very good odds, same as me :happy:  3 more months and I will have another PET Scan to see how successful the treatment has been.

At your stage we stocked up with soft foods like Rice Pudding, Custard, Ice Cream, Soup, Fish in Sauce etc.  We didn't use many of them as it was my total loss of taste that caused me to stop eating rather than pain in the throat and mouth, but I was very lucky in that sense.  However I will be needing them as I come out the other side as my throat is no longer used to swallowing more solid food.  Even with boiled rice I have to swallow water after each mouthful to help it down.  You will be given mouth and throat exercises to do, my advice do them!

Alli I hope that this is of help, if only a little.  Take each day at a time.

Hope that the sun is shinning with you.

Stay Strong

Al x

Morning 

sun is definately shinning and looking nice. We are both hoping to get our second jabs today hubby is excited he is hankering me to take him to town! 

there was a huge commotion in the carport last night we think the wedding reception had the usual fisty cuffs!! or the alligators had been invited back for the party and got annoyed that the food was a bit scarsce! on my list for a real sort out but need someone to help me shift some heavy bits of furniture. 

Brilliant to hear about the plants Al sounds like you should have a lot of colour this year how pretty that will be. you must have had some decent size plugs mine were the tiniest ones not even 1cm across and am unfortunately loosing half of them. however, love seeing the others growing. I love things growing from seed or small it is fascinating and exciting all in one. My veggies are doing well not quite to the transpkanting stage yet but getting there. 

I have ordered a truffle kent cob tree to go in the corner of my new area being develpoed, should be exciting if i get a truffle in 4 years time. 

Alli no scan only covered neck and throat. Hope all goes well with dentist and enjoy the mask fitting Al said it was quite good. you will have to tell us what name you call yours. 

Al what fantastic news re your eating so plesed for you that is something to celebrate!! 

last night was hilarious. i was sitting on my bed and had rasputin next to me. rodney was on a small cat tree curled up and a couple of the bengal boys were around when a pigeon strolled across the fence outsode. we could not see the pigeon but his silhouette was apparent throught the blinds suddenly he moved rasputin flew up in the air after him and rodney shot across the room like he had seen a ghost !!! took a while before they all settled and pigeon landed on bird table to eat as if nothing happened. 

enjoy your days and the sun keep smiling x

Hi Al

Sorry to here you had a bad reaction to the jab hope your ok now, know what you mean about all the info my heads going to pop lol, glad its a body scan before treatment been sore down either side of my chest and I'm hoping it just menopause symptoms and nothing more sinister as lymph nodes are there but trying not to worry. I've started going for a walk each day which I'm actually enjoying trying to build up a bit of stamina before the battle, everything seems to point to it making more sense getting the feeding tube in the beginning was yours the one in tum or down your nose. It was another lovely day today hope you had a good day to and managed to spend time making most of the sun

Sorry for all the questions lol

Alli x

Hello

How are you feeling after your jabs hope you and hubby are ok and not had any bad reactions, poor Rodney sounds like he got a real fright bless him, it seems like the woodpidgeon is a regular still at your bird table its the same here I thought one had moved in he was on there for that long maybe just ate to much and couldn't take off lol, another lovely day here went for a walk I'm trying to build myself up a bit before treatment but shattered now so methinks an early night. My dad well he's actually my step dad but him and mum have been together for 40 years is back in hospital again and he's not doing to good so hoping he's going to be ok

Hope you had a lovely day 

Alli x

Morning 

All good here no reaction to injections just a bit sleepy but nothing like Al. Glad to be done. 

Alli glad your enjoying your days but dont over do the building up that would be the same as doing none. 

sorry to hear about your stepdad Alli hope he will be ok. 

started clearing the carport a little yesterday and hubby did a bot of sweeping when i was in bed. he told me that one of the mini mafia was present and he could distinctly tell that it was swearing at him! well he will be swearing more today when i do a bit more lol. 

hope your not too tired now Al. 

i was impressed with myself as i had the energy to do some proper cooking and made an indian forgetting it was St Georges day and we like to celelbrate that since it is forgotten alongside everyione elses but we feel it is just as important having a person like george even if he technically was not english he was out patron saint. anyway made a chana dhall - yellow split pea curry like a thick soup, paneer and cheese curry and chicken pillaf. two i made in slow cookers so easy to do. trouble is i always make too much so will have a few days of eating up lol. the other good thing is i can microwave if cant be bothered to cook properly later. 

pedro has been a bit energetic this morning so he is blotto next to me with rum tum and rasputin. 

enjoy your days 

keep smiling x

Hi

All that food sounds scrumptious Elona wish I could cook I'm hopeless at least what I make is edible just about lol, glad you and your hubby were ok after the jab and no side effects. Went for another walk today a little bit further this time I'm thoroughly enjoying it and the weather's to nice to sit in, saw the weirdest bird in a field next to a house were I walk I think it was there's,

it looked like a massive peacock but grey without the lovely peacock feathers I'm not sure it was to pleased to see me so I made a sharp exit lol. Will definitely miss the antics of the mini mafia when they are evicted i like the idea of the wedding fisticuffs lol, hope your ok Al and are taking it easy

Alli x

Hi Alli bet you can cook really! 

glad you have had a good walk apparently walking is also a good destressor so all in all a good thing and nice to enjoy the weather. it is beautiful today. 

well i have been cleaning up after the mini mafia in the carport wow the party was a large one and by some little drops of blood there were definately the family fisticuffs!! the carport is now ready for the hedgehogs again all disinfected and looking good. took all day doing it slowly but really pleased will shock the mini mafia later lol when they try and explore. 

have my appointment finally not until 30 th June though with the thoracic consultant really pleased about that. \\

think your bird could be a peahen the female peacock she is ot coloured like the male, but still reasonable size. we have a house donw the road with peacokcs they are magnificent birds. 

my pigeon is as big as i get here lol with the ravens who nest in trees not far away. pigeon is getting fatter on my bird seed but i dont mind see if he can scare the cats again later lol. 

have great evening 

x

morning after cleaning carport feel realy tired today so late waking. 

looks like it should be another good day even though the wind is blowing so it is probably chilly outside. 

one of the mini mafia was desperately trying to emerge last night could hear all the scrapping at the hole (i had filled with polyfilla). hubby says there were graffetti protestations and a lot of swearing to be heard! me thinks the battle has begun!!! am going to have to investigate the area later tis morning. hubby says there may well be a rally later as he maybe gathering recruits lol. 

so pleased i have my appointmnet now just got to hope they can discover the cause. 

Al how are your wifes plants coming along and your veggies/herbs?

hope everyone has a good relaxing day.

keep smiling x

morning after cleaning carport feel realy tired today so late waking. 

looks like it should be another good day even though the wind is blowing so it is probably chilly outside. 

one of the mini mafia was desperately trying to emerge last night could hear all the scrapping at the hole (i had filled with polyfilla). hubby says there were graffetti protestations and a lot of swearing to be heard! me thinks the battle has begun!!! am going to have to investigate the area later tis morning. hubby says there may well be a rally later as he maybe gathering recruits lol. 

so pleased i have my appointmnet now just got to hope they can discover the cause. 

Al how are your wifes plants coming along and your veggies/herbs?

hope everyone has a good relaxing day.

keep smiling x

morning 

a bit duller this morning and boy isnt it chilly again would be lovely to have decent weather to sit outside but i suppose it is only April still. 

no mini mafia last night that hubby could detect hope they are not planning the next manoevre! 

cats have finally discovered the bird table through the window lol and you realise sometimes how stupid they can be trying to pounce through a glass sheet - really does not work!! there were a few roll over backwards , straighten themselves up then look cat determined and try again !! 

Al hope your ok 

Alli hope your ok too

Sam hope your ok

tired today so may not do much. watched the suicide squad yestrday with will smith in a gritty super hero film - my sort of action movie and enjoyed it. 

have a good day and keep smiling x

Morning

Glad to hear you finally have an appt Elona but sorry its so far off at least now they will be able to find the cause and treat it, we do seem to spend a lot of time wAiting for appt lol, tomorrow is dental assessment day and was told I should get dates for treatments so scared and happy about that. Didn't go for walk yesterday but was busy went shopping and then back to Gary's for dinner in his garden as the weather was lovely was so pooped when I got home I forgot to post, you were right about the peahen Elona I looked it up online and also found a white peacock I was mesmerized it was so beautiful. I think the mini maffia are determined to stay by the sound of things I think you have a battle ahead had visions off rats in army uniforms planning battle tactics, I read a few posts back Al that you had illustrated a book for your late brother in law maybe you could get together with Elonas hubby and do that book the adventures of the mini maffia lol. Off to New Brighton today hope weather brightens up Gary's off work and my daughter finishes at lunchtime and have even persuaded my son to come to, Im hoping it will be quiet as its Monday just thought it would be nice to have a day at the seaside I intend to have chips and ice cream lol

Hope you have a lovely day to take care

Alli x

Hi Elona

I am ok all things concidered thank you :happy:  Sadly energy levels and chronic fatigue don't allow me to post daily.  I asked the MDT about it yesterday as energy level getting me down a bit, they said it can take 6 to 8 weeks post treatment for levels to return to any kind of normal.  Post treatment is taken from the third week after the last radiotherapy, so although it feels like ages since radio this is technically week one... Humph!

I may also have contracted mucositis.  I say 'may' as although quite common during treatment it is rare to contract it so far after.  I am seeing ENT tomorrow (Wednesday) so they can have a proper look to be on the safe side.  Apparently it is also rare for ENT to look at the throat this soon after treatment so you can't help but worry a bit.

How did you and hubby fair with your second jabs?  Better than me I hope.

A Truffle Kent Cob Tree sounds interesting, I have no idea what they are or how they look.  I would have one just for the fab name! :happy:  If truffles are to grow under it you will need to be on le look out for a rescue pig to snuffle them out.  I believe that with certain trees that truffles favour it takes around 4 years for the first truffles.

Just read your post containing your non reactions to the second jab, so happy for you both :happy:

Your Indian on St Georges Day sounded lovely, can't wait for my first indian.  To be fair to you there is nothing more English than an Indian, it's as English as roast on a Sunday :happy:

So glad to learn that you have finally got your appointment with the Thoracic consultant.  30th June may seem a way off at the moment, but it will soon go by.  Remember the 'Take each day at a time'.  Sometimes more easily said than done, I know.

Plants, herbs, and vaggies.... vaggie? What's a vaggie lol?   Veggies are all doing well, even the sprouts that were transplanted outside last week.  Just love watching things grow, very exciting.  We must be turning into proper gardeners as we are hoping for a bit of rain this week :laugh:

Love the film Suicide Squad!  Took my eldest to the flicks to watch it.  Think it was the last film that I managed to stay awake through, I had a habbit of falling asleep in the cinema.

I hope that your energy levels have returned today, even if just a bit.

Enjoy your day. Stay Strong.

Al x

Hi 

AL please take things very easily then if you have chronic fatigue and possible mucositis. (hope ENT goes ok tomorrow) seems like you are breaking all rules about being different. hoping this is nothing serious and nothing to worry about. i thnk though people will get a brilliant idea of what you and sam and Alli will be going through by reading this thread. 

am feeling bit better today much like you guys i have good and bad days with fatigue but not so bad as you. trouble is i cannot get to sleep during day very much hence watch a film. 

hahaha we will all be gardeners here!!! should build ourselves another group the cancer chat gardeners lol. well i have always found it therapeutic - yes sorry about spelling, head goes ahead of fingers so sometimes comes out wrong!! my yakon roots are arriving in about a week so that will be exciting to see what they look like. glad to report some of my little plugs are growing yay!! 

going to take hubby into town this morning - my first trip out since christmas - apart from hospital and doctors etc. not sure about wanting to go still even though we have masks and are vaccinated because not sure i should but need to get to bank and he is hankering going round poundland!! he has a sweet tooth lol. i think though he is just looking forward to getting out. At least it is sunny. 

hubby came through this morning to inform me that there was a mini mafia funeral last night (he was truying to make me feel sorry for the mini mafia lol) - the one who had been scrapping a lot to try and get back into carport. he said they made a real racket, had beer cans piled high on top of the coffin, one leg was hanging out, there was a lot of singing and wailing as they walked past. the men were as *** as neuts. (they were faking everything!!!). the protests have begun. as far as iam concerned the carport looks really good now and ready for the hedgehogs. 

am being pestered by rumple teazer now boy he has claws, since he has lost his shyness he has got quite affectionnate but also i need to clip those claws since he pats me with them and they hurt!! - especially at 2am!!! 

well enjoy your day 

keep smiling x

forgot Alli good luck witht he dentist appt

Hi Elona :happy:

Look at me posting two days in a row!  probably because we spent all day yesterday doing absolutely nothing, bar watching a film and a few tv shows.

It does feel like I am breaking the rules again, I'm fed up with rare lol.  Just one bit of normallity, that's all I ask...  Actually life would be boring if everything was 'normal'.

Cancer Gardeners Chat Haha!  Love it.   It is raining here today, all day I believe, which I am actually happy about.  Can't beat a bit of rain water for the young plants.  My Grandad had a water butt to catch rain water, think I am going to put one on my shopping list.  Good to learn that your plugs are growing, here's to blooming gardens this year, such a shame we cannot post pics on here.

How did your trip with hubby into town go?  Our friends that visited, he absolutely loves Poundland.  I am sure he must have shares in the place lol.

Sounds like the Hedgehog Hotel will be opening it's doors soon.  We used to get a lot of hedghogs when I lived in the countryside.  Didn't see one for years after and then we happened apon a weak young one last year in a local park, I was shocked that it was the first time my wife had ever seen one. We kept an eye on it until a local hedghog sanctury picked it up.  We often wonder how he/she got on.

Hope you have a great day today

Stay Strong.

Al x

Hope all is OK :happy:

Al x

Hi

Will have to get tomatoes growing now so I can be part the gardeners chat group  Elona lol what is a Yakon  root? hope your hubby stocked up on goodies from poundland they do have a good selection. Hope your appointment went ok Al how did you get on, hopefully your energy levels will pick up soon. Had a busy couple of days went out Monday to New Brighton and had a lovely time and had chips and fudge so no chance of losing weight before treatment that's my excuse anyway lol, hospital yesterday the mask fitting was an interesting experience got a bit panicky cause I'm claustrophobic but they were lovely had scan of head and chest with mask on that's going to take some a getting used to, after dental assessment they said I didn't need extractions so treatment starts Thursday  so scared and pleased at the same time, the doctor has decided against the tube in tum because I have ulcerative colitis so will see how I go and maybe ng tube if needed. The bird I saw was a Rhea I was talking to a neighbour and she said its the farmers so mystery solved, catching up on cleaning today not very exciting  but has to be done

Hope you have a lovely day

Alli x

Afternoon 

bit late today needed more mellow time, and a dog to cuddle up to lol. 

A little pair of pathetic eyes was watching me yesterday cleaning near a window and it skirted out a couple of times to collect a piece of corn litter before running back. felt a slight pang of guilt but it soon passed! there were a few bangs last night too but we could not assertain where they came from this morning. - the plan is afoot!

the trip into town yesterday was not enjoyable. There were too many people not wearing masks i did not like it. Even though iam now vaccinated until i get sorted i do not want to come into contact with stupidity. One woman went into poundland with her young child, put a mask on herself to go inside but didnt put on on her child! could not believe it. even if the risk is low for children i would not have taken any risk. We did not stay out long. 

I let hubby go into poundland by himself and he came out with a bag full lol./ - with the pretence that he had thought of me at the same time and some of the items were therefore for me! Always a good excuse. 

cant believe how cold it is today, we certainly do not have any sun and the wind chill factor is freezing. It is supposed to be summer time - the only indication is the beautiful blossom on my fruit trees. (i have made a small area into an orchard with plum, apple, pear, saskatoon, elderberry and walnut. The apple and pear act as a fence surrounding one side. They also act as a divider for the garden and a wind break. 

there have been a few lovely birds around this morning. The pigeon came for his morning feed, there was a blackbird at the bottom of the garden, a rook next door - what an amazing pointed beak he has - very dangerous!, blue *** and sparrow. i do love this time of year. cant say it enough but love the emergence of new life. 

watching sony movies today - love disaster films! after watching asteroid versus the earth we now have eruption LA lol keeps me happy - no energy for work on paper or book or anything else today, probably just me being lazy lol. shame though have a lot i want to do. Doea not help when a cat attacks you at 2am when you dont need to get up for medication until 4am! the swine you cannot reason with them lol. 

anyway hope you have a good day 

Al great to see you two days in a row lol 

Alli hope went ok. 

keep smiling x

morning

Alli glad you did not need to have any teeth out thats good and that your treatment can start. Hope it goes ok anmd remember we are here for you. x By the way have no idea what yakon roots are like lol they just sounded really interesting so thought i would try them lol!! 

At the moment it is lovely and sunny but they have forcast some rain. Boy the plants need a good downpour they are very dry. it also gives me an excuse not to be able to do anything or feel guilty about not being able to do anything outside. ! i have created so much junk we need a skip!! 

Next door had put out a half coconut filled with stuf for birds and the rook was on it this morning, byt the way it was pecking i would be surprised if there was anything else for the other birds left. Rum tum has taken great interest in looking out the window at them and still forgets there is a window separating him from getting at them ! 

couple of thumps in the carpart again last night but no visible evidence! ....

keep smiling x