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

Just come across this post.  I'm in pre diagnosis. I only went down for antibiotics last Thursday.  Since then I've spoken to the GP more times than I have in years.  Pelvic ultrasound, abdominal ultrasound. ECG abd x rays.  Now waiting for 2 week refer.  I'm not sure I feel as stomg as you at the moment but thank you for inspiring post. 

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