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

lol I love that name too!!!!!

morning 

bit dull this morning but not too bad. 

hahaha to eurovision!!! the hubby as a true rocker and metal head absolutely detests the veurovision, howver, there was a take off on you tube last year that was absolutely brilliant. i find the original amusing at times but the scoring too long drawn out. i dont think though i have actually watched one all the way through! 

Al will look out for that film. thanks. told hubby name of microwave and he thought it was brilliant!

hubby is having second covid jab friday - we are hoping they will be able to do mine too. At least that will be oned thing done then. 

Alli good luck with the mdt phone call. 

bit disappointed with some of my plug plants but then surpose thats always the risk you get with offers. the plugs were so tiny the journey did not help so think will loose half of them. some of the geraniums ding well, so keep hoping. have now got 5 butternut squash plants so really pleased. they obviously just needed a good tallking too!

Al love your pets names and Alli your girls guinea pigs! 

i have two hens celeste and cecilly who live with sir reggie perrin. five koi carp two originals were named susies spirit and sharras soul. 6 cats rum tum tugger, rolo lee haggis, rumpleteazer, rodney, stanzia, rasputin, 2 dogs pedro and shugs and an african grey socrates. most have come from work lol never work at a vetslol. like Al we have to say no more at moment cannot go back to ten cats like we were two years ago!!! they all have amazing stories but are all wonderfully affectionate. thesevare my family!

having another restfukl day, hope you all have a good day

enjoy your days keep smiling

x

Hello

Sun is struggling to come out and a bit cooler today here, will have to stay out of Sun today as my face got a bit burnt after sitting out yesterday kept thinking I was having a hot flush till I looked in mirror lol. Hope you are feeling better today Elona you and Al are so lovely to take care of so many pets I love all the names you have for them. Had my phone appt off the oncologist and he explained I would have 30 sessions of radiation over 6wks you were right Al and 2 sessions of chemo, he said they do either 2 big doses or 6 smaller ones so they have gone with the 2 doses for me, I will be going in the next week or so for scan and mask fitting and to see dentist I think all in one day, he mentioned about feeding tube and said I might be better getting it fitted in the beginning did they discuss that with you Al ?  he also said that I have a 70 to 80 percent chance of beating it so feeling very positive. 

Just filled the bird table with goodies so will sit with cuppa and wait for feathered visitors 

Have a great day

All I x

MOrning 

lovely here too thats good. 

Alli glad you have had your chat sounds really positive and thats great just got to remember when you feel down to have something to remind yourself of the positiivity that there is that lovely light at the end of the tunnel with lots of hope. 

thank you am feeling better today as Al says you have up and down days well i do too! now furloughed until end May so dont need to worry about work, one relief of my mind. 

I like to write all sorts of things here, the animals, the birds etc because although this is for everyone to share expereinces and we do it is I also feel a place of hope and to make peopple smile a welcome distraction in the hard times people go through. so if i can make people smile and give. little distraction i have helped. (i hope). 

The mini mafia has been spotted down the garden so the banners are out - declaration of war is being discussed in the war room of the bungalow and plans are being drawn to expel them from the garden - humanely! may involve cementing more holes and barracading. 

some light painint today i think and going to make an indian for tomorrow. Cant eat spicy food like i used to which is a shame but then sometimes you get more taste without too much spice anyway. Have not tried butter chicken AL like you suggested but am allergic to cream so have to be a it careful, will have a look at the recipe. -oh and will look up that film you suggested. 

enjoy the sun today and get rest

keep smiling x

Hi Al

Was wondering did they give you a full body scan pre treatment or just head and neck

Alli 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

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

Hi Allie :happy:

You ask as many questions as you like, I will try and be as helpful as I can.

The feeding tube that I have is an NG Tube, goes up the nose and down the throat.  Sounds worse than it is.  The ones that they connect straight to the belly I believe that they avoid those if they can.  More trauma to the body.

The full body PET Scan does help to ease your mind.  I didn't even mind if they found something, just knowing was enough for me.  

It's good that you are out walking, even better that you are enjoying it :happy:  It all helps, just be careful not to over do it.  Last thing you need going into treatment is to be fatigued.

I will be thinking of you today, dental appointment.  Fingers crossed you need no extractions.  The dentists that I saw at hospital were a breed apart from my regular dentist.  They will do everything they can to save your teeth.  My regular dentist is no longer allowed to remove any teeth.  If they feel that I need one removed I have to go back to the hospital and they will do their best to save it.

Just reading through your posts, I would love to illustrate a mini mafia book :happy:

All the best today.

Be Strong

Al x