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tonsil cancer...our journey so far....after the treatment!

2011-02-15T22:16:31Z

hiya all. its been a long time since i ve been on here. i used the site a lot when trev was first diagnosed...but unfortunately i felt that although i met some lovely supportive people...others werent so. but spose everyone is different!!

thought u wud give an update after trevs treatment.....he had intensive chemo over 3 cycles....one week on 2 off. hair didnt come out til day before cycle 3!!! tumout bagain to shrink 2 days into chemo!! was amazing. chemo was up and down after first cycle....he caught a bug during cycle 2 and his blood count depelted during cycle 3 ...but he got thru it!! over xmas he went thru 35 sessions of radiotherapy...with one chemo during the week. managed well til 3 weeks in....then got sore xmas week. did well tho. started to use his peg during week 5. he recieved excellent care at james cook hospital reg pain relief etc etc and mouth care and this has helped a lot. the skin on his neck did burn...but with the right cream this eased and now, exactly 4 weeks after its completely healed!!!! he did have mucus issues for the first week after radio ended but thats also stopped. his mouth is a little dry sometimes but he s managin really well. lotsa water.!! he s started back eating what he can...and somehow has managed a chines take away and pizza! dont know how like!! just wanted to get his calories up. from diagnosis to now he s lots a stone. his hair is growing back...and not an afro in sight. we re off to see the consultant on thurs for a check up so fingers crossed. life s carried on pretty much as normal....he s been back dj ing and having the odd pint. we ve had some nights out...his speech is back to normal...and he only had about 2 weeks not eating solids....then super noodles bacame his best mate!!! well thats about all so far. hope this blog finds everyone in a happy place....or in a safe place for them. xx

take care

lisa xx

tonsil cancer....our journey...the update!

2010-12-05T21:41:03Z

hiya all

not posted for a while... dont know why...think it was coz we were just dealin with it all ourselves and just sorta got on with it! well trev eventually finished his chemo cycles.....3 cycles....one week hooked up 24/7 for 5 days.....2 weeks off then start agen. did realy well....first cyle he breezed thru...tumour began to shrink immediately....second cycle...again really good but caught a sickness bug which floored him for a week..but agen bounced back....held onto his hair til the eve of the final cycle.....he was gutted when it came out, but the eyebrows lashes and body hair is still there. after the third chemo he was ok....but then got a mad infection...really low cell count etc and was back in hospital for 4 days. but agen...bounced back!! tumour isnt visible anymore!! soooooo...last couple weeks have been in preparation for radiotherapy. mask made etc. was due to start last week but we were snowed in. so it all starts tomorro. 6 weeks worth. im feelin a little scared....but then agen i was at start of chemo...just fear of the unknown. think its coz some people say this is worse than chemo...others say vice versa....suppose we just gonn have to wait and see! trev had his throat scan last week and we now waitin for the results. we ve sorta had our lives back since end of chemo....but it all starts again tomorro. lets see what happens

thanks for listenin

lisa

tonsil cancer...our journey so far...chemo cycle 2 !!!

2010-10-17T21:57:39Z

sunday october 17th 2010 - went to pick trev up today......end of chemo cycle 2!!! went into hospital on tuesday....been hooked up ever since!! i ve been to visit him daily and yet again he s done brilliantly!!! had a slight infection in his trachy and peg sites....always does when he goes in hospital!!! but course of antibiotics and he s champion : )

there was another lad his age ...37....in the next bed...was really weird..turns out he lives close to us...has the same cancer...and his girlfriend has same surname as me!!! weeeeird!!!!!!!!!!!! him and trev were both discharged today. trev is a cycle ahead and they have different treatment schedules reg peg and trachy etc. so they have had good chats!

well.....trev has again taken to chemo really well . so far...no sickness or tiredness....still loadsa energy and appetite!! we went out to our verydeserted local for a swift half...game of pool and some juke box tunes! was lovely! he s bought hats....dunno if the hair is gonna jump off yet but he s waitin and seein!!! bless him. he really is inspirational...well to me....only diagnosed aug 3.....trachy..peg.....teeth out...chemo.....and he s just goin for it!!! every day is a day closer to the rest of our lives together!!

xxxx

our journey so far with tonsil cancer x

2010-10-14T19:56:15Z

well its been a while since i last blogged. so i ll give an update....

trev completed his first chemo cycle on sept 26........and he had absolutely no side effects at all . full of energy and life!!!!!! went to see his consultant..who is really pleased with his progress. the tumour has shrank massively!!! he has a normal neck now ....its gone from half a grapefruit on his neck to a small walnut. his tonsil is now no longer fused to his tongue...everythin shrinkin back

on tuesday this week he started his second cycle......and so far so good. no sickness etc....eatin everythin in site!! and tumour is shrinkin daily!! im up at the hospital daily...and we have 'dates'......try to keep things normal!! well as normal as we can!!

the journey continues......

our journey so far....after chemo day 6 !! x

2010-10-01T16:32:06Z

october 1st - well alls still good in lisa land!!! trev still doing soooo well....been a little tired at some points but still not as tired as before chemo!! the mac nurses really pleased with him!! he still has loadsa energy and is gettin up on a mornin...shaved and reay etc etc..then we try and do somethin in the day...getting bits for his new house....goin for walks etc. its nice really!!

tonight.....after being together for 7 months.....and after illness...cancer diagnosis....biopsies....peg and trachy....and chemo....me and trev are goin out for our first meal together!!!! we were skint at the beginnin of the relationship..and trev had no job.....then bang|!!! cancer came along!!! so we not had chance to do much!!! im sooooo excited!!!!!!

happy days.

lisa xx

tonsil cancer....day 4 after chemo...our story so far x

2010-09-29T18:13:51Z

september 29th - back to darlington hospital today...trev was having his trachy tubes changes. his mac nurse was really pleased to see how well he looks after his first chemo cycle!!! she said how she can visibly see the tumour and tonsil are shrinkin back!! over the moon!!!! well we were only in there about half an hour so we had ourselves a look into town.....and had the most lush day!! didnt talk about cancer or treatment!!! just shoppin and fashion etc etc!!! was brilliant! he bought himself some things for his new house...which he only got the week of his diagnosis!! never really been fully settled in yet! he has to stay at his mams up the road unless im there...in case of reactions etc etc.

we both goin for haircuts tomorro as we plannin to go to an indie night on sat night...and with being a pair of mods... we need to look right!! hahaha. its a bit strange really....we were told initially he wud lose his hair...bt due to a bad reaction they have changed the chemo combination and now he s on cisplatin and 5fu....and after takin advice on the mac site...they reckon it doesnt cause hair loss!! maybe a little thinning.well.....we quite excited!!! but if it does fall out due to treatment....we know its a small price to pay for yr life!!!! he reckons he ll buy a paul weller wig if it falls out!!.

so far.....all still gin really well. there is a little tiredness creepin in but he s coping so far. we shall see!

thanks for listening

lisa xx

our journey.....day 2 after chemo cycle 1 x

2010-09-27T23:31:08Z

27th september - a sort of a weird one today....alls still fine...trev doin well, no pain or sickness....and had really good sleep to make up for no kippin in hospital.....so why am i feelin a bit down!!????? really dont know!! maybe the flyin about last week and the emotions of it all are catchin up on me!! really not sure! maybe when i was visitin im up at the hospital we had time for 'us'. i really am not sure. maybe im just low coz me new boyfriend got cancer and everyone tells me he ll def get the side effects so i now feel like im just waitin for them to happen!!!

ah im sure it ll pass..like i sed...im fine, all s cool....just feel a bit......flat

thanks for listening..sure smiley lisa ll be back on track tomorro!!!

lisa xx

tonsil cancer....end of cycle 1..release from hospital ..day 1 x

2010-09-26T20:34:42Z

september 26th - well today trev got released from hospital!!! got out this mornin!! sooo pleased!! we got him all sorted with his meds and he said his byes to THE LADS!! they gonna miss him! he was the baby in the ward and he s really helped them out. goerge...one of the lads...said eee trev son, am gonna miss u. the sad thing is they more than likely still gonna be in when he goes back in three weeks . bless them

well we came home....saw trevs mam..and she was soo pleased he was home. he got changed and we went for a swift one at out local!! chilled with some good tunes!! was lovely to just sit and chat!! we were in exactly the same place where we met up for our first brief date....we were sayin how back then no one wud have known what was in store!! it was only feb 6th this year!!

trev s lookin and feelin so well. he has colour in his cheeks and has a brill appetite still. we have talked and talked....and its been good for us!!! reckon this will def make us stronger as a couple!! know we only new to this relationship but we know this is for keeps!! we are doing everythin backwards!!! but sure its gonna lead us forward together!! i bought him a frame ages ago and put our first pic in...and it says LOVE LOVE LAUGH.... and we ve adopted this as our motto!!

thanks for listenin. means a lot

tonsil cancer...our chemo journey day 6

2010-09-25T22:36:57Z

september 25th - well another good day!!! went up to the hospital to see trev...and he looked really well again!!! he d been on phone durin today....had been out and about gettin the papers etc for 'the lads'. think they gonna miss him when he s released....WHICH IS TOMORRO!!!! :) sooo happy!!! he s asked can i go for him after breakfast!! hell yeah!!!

he s had last chemo session today...and is still doin really well. tumour etc is still shrinkin...its visibly smaller again tonight!! brill how its going!! theres 2 and a half finger widths now under his ear and above tumour!! there was none last weekend! at moment he s still feelin fit and well. long may it last....dunno how long its gonna but we shall see. he s determined to just take a day at a time...and when he feels tired etc he s gonna listen to his body!! he s used to just keepin goin....but im signed off til half term in october so i ll keep an eye on him!! make sure he behaves!!!

went to the chapel again tonight and lit some candles....one for trev and one for my mam. its 3 yrs today that she passed away. she was only 61...and my best friend. trev got me a lovely thinkin of you card. really sweet. went to see my dad at his social night.and won a bottle of wine!! just thought it wud be nice to see him tonight esp with it being mams anniversary . on our way out he gave me £20 ...for me and trev to go for a meal!! know it sounds like a treat for us.....and it is!!!! during the 7 month we been together...some of that time trev was outta work so money was tight...then suddenly cancer came and jumped onto the scene....so althought i have been to scans, operations, consultants appointments etc etc....me and trev have never been out for a meal together!!! yeah a bag of chips or a takeaway in the house....but never been out anywhere for one. so we ve decided to make the most of it before he loses his sense of taste!!! lookin forward to being a normal couple!!! xxxx

tonsil cancer....chemo day 5..our story so far xx

2010-09-24T17:17:21Z

september 24th - well another day, another chemo session!!! went up to james cook hospital..or now affectionately known as jimmy c's. went to the mac coffee morning....won chocs . earrings and bath stuff!! woo hoo!! lady luck was shinin today!!!

spent the whole day up there.been for walks, coffee...dinner etc. been lush! have to share with you....i got trev to walk in front of me...bcause i can see his tumour is visibly shrinkin!!! its mad!!!!!!!!!!!! we have looked at pics from last weekend and there is such a difference!! he looks nearly back to normal!! im really not imaginin it..and have taken pics to prove it!! all the puffiness is going from his neck...its shrinkin down from near his ear..he has no pain at all and his tonsil is shrinkin back too!!! he still feels happy and healthy!! know the chemo will prob kick in and he ll have side effects..but at min he s gaininfg such strength from feelin top o the world!!!

he has energy at min...although he is a little tired as he cant sleep! plus he was drinkin too much coffee!!! trachy is spot on...peg is a little oozy..too much coffee again!!! according to peg nurse....tightened it up and he s cool : )

one of the main differneces i have noticed..and this sounds real soppy....he has a sparkle in his eyes....a zest for life....he s really happy....and is determined to keep positive! we went to the chapel today ..daily routine....and we lit candles and said little prayers. we held hands and enjoyed the time to focus. was beautiful. just to sit quiet and share a moment like that with someone u love. lush!!!

long may it all last!!

thanks xx

tonsil cancer....chemo journey day 4!! xx

2010-09-23T17:39:53Z

23rd september -- well another good day!! spent it up the hospital with trev. sat out in the 'beer garden' haha..was lush!! he looks so so well. dont know how long this gonna last!! he has less pain tho in his neck and tumour. and the tumour is actually smaller than it has been! still big to anyone else..but to us it has deffo shrank a little near his ear.

he s full of energy...still got an appetite which is good. later this afternoon his peg has started to ooze....hot brown liquid!! docs think its the amoutn of coffee he s been drinkin. so he s back to water!! peg nurse gonna come and have a look tomorro.

spent all of out time out of the ward...its a bit depressin...he s soo young and lots of the gentlemen in their are a lot older and much more sick. he gets on well with them like...calls them THE LADS!!! bless. must be hard for them.and him really too! he s only 37. he s been goin to smiths and gettin them their papers.!! lol

well tomorro im goin up there again....we goin to the macmillan coffee mornin. shud be nice. then sat im back again....goin later on ..early evenin..then we can sit int he lounge area and chill!! alternative sat night out!! hahaha

gotta make the most of it!! we treatin him being there like 'dates!' works for us!!

hope everyone well

big love to all

lisa xx

tonsil cancer...chemo journey day 3!!

2010-09-22T22:14:15Z

september 22nd - well its day 3 of trev being in hospital and day 2 of chemo!! was chattin to him on facebook this mornin....and he was fighting fit!! by 8 am...showered, changed, meds, trachy tubes sorted and peg cleaned!!! never been known! i was due to see him tonight...but since he felt so well i went thru today for a date!!! we went for a coffee and sat in the gardens. just chilled...cud have been a lush beer garden somewhere!!!

he s on cistiplan..or howerever its spelt!! that was last night and now he hooked up to 5fu all day and night. got a tube thing in his pocket. thing is.....he looks soooo well!! healthier than he has done in weeks! first thing i noticed when i went up is he has colour in his cheeks!! not had that in a while!! i was amazed!! cudnt stop lookin at him!!! lol . he s eatin like a horse.....plus plenty fluids.....and has bags of energy!!! took me on a hike around the outside of the hospital...and if you ve been to james cook in boro....ITS MASSIVE!!!!!! he s just rang tonight,,,,and is feelin really well. says his neck feelin little easier ...and his throat just feelin a bit dry. he s feelin really positive....and i am so we rubbin off on each other. he s in there til sunday coz of having that reaction beginnin of week he s a day behind. not bothered as long as he s fine!

so thats us as the minute......is it normal? whats normal? i dunno but its good to see him lookin and feelin well!!!

ps......i read that the combination of this chemo doesnt cause hair loss....any info anyone???

pps....also....since the cancer is in his tonsil...its sorta fusin to his tongue at the back....the docs know and said its a little in there...but what im wonderin and havent asked as yet...with the treatment to shrink everythin....so u reckon it ll shrink the tonsil back or will it be surgery??? just wondering

thanks for yr support

lisa xxxx

tonsil cancer....chemo journey..our story so far...day 2 continued!!! x

2010-09-21T18:36:01Z

september 21st - well......fingers crossed...and touchin wood....todays chemo drugs have gone in ok...no mad reaction like yesterday!!! woo !! hoo!!! he s on cisplatin and 5fu.....and so far so good!! he s just over moon its gone ok today. know we got a long way to go but onwards and upwards! he now feels his treatment is starting!! def got a positive head on.

was reading about the combination of the drugs an how hair loss only MIGHT happen.....just wondered if anyone had any info on this? we were told the other day that he wud lose it....but now he s not on same chemo he had reaction to....just wonderin i spose. he has been hat shoppin on line like!! bless him!!

well thank u for listenin....and tomorro is another day.hope its a good one whether u patient or carer

big love to all xx

our story so far...tonsil cancer and chemo day 2!! x

2010-09-21T10:02:58Z

september 20th 21st ....well nothin runs smooth does it??? left trev in the hospital ..chillin with a magazine. came home and did mam stuff!!! went on line and was chattin to him on facebook,,had just hooked him up to chemo..then he went quiet!! he text half hour later...he d had massive bad reaction to it...sweats, dizzy, tight chest and then blacked out. nurse had stayed to check on him luckily!!! he said he d been totally spaced out!!! took him back 20yrs to his raving days i think!!!! i can laugh now or i will cry!! they have said apparently they are gonna give him steroids before todays attempt.

obviously i have totally stressed....is this it? what if he cant be cured ? whats gonna happen? i rang his macmillan nrse this mornin and she said that it does happen..people do have reactions.she said there are lots of combinations they can try with him...and they never falter at the first hurdle..they ll always keep going. she said their aim is to cure...she said sadly for some people its not the case but with him it is. she also said that if things changed they wud always be truthful. dont think u can say fairer than that!! he s still positive and determined.

sooo the journey continues....what will day 2 bring????

xxx

our story so far....chemo journey day 1 !! xx

2010-09-20T09:11:22Z

20th september - well, today s the day!!! we off to james cook hopsital in middlesbrough at about 12 noon. trev will be starting the first cycle of chemo....3 cycles. we feeling positive.....he was terrified about gettin the trachy etc in...but he s not going into this scared!!! he s got such a positive outlook. god knows what todays gonna bring but like everythin else in this journey..we surely gonna find out!!!

im focussed into doing what i need to do to be there and to support him. love him to bits and im there for him forever now. he s like my right arm.....cant not have him around!! fate put us together.....and i hope fate has kind plans for us!!!

will blog later and say how we got on! best wishes to all who are goin thru this horrible disease...and for the wonderful people who help care