Bra nyheter!

Allt gick bra!! Pappa er super lettad och resten av familjen lika saa!! :-)
Lekaren sa att allt ser fint ut och kenns bra. De tog ocksaa ut "PEGGEN" i magen daa de inte tyckte att den behoevdes lengre. Perfekt! Pappa er mycket nojd och ser nu fram emot att aaka till Tyskland och Moseldalen en laang helg tillsammans med goda venner. Sedan ska han och mamma komma hit till England och helsa paa, foerst gaangen paa ett helt aar!
Nesta undersoekning blir visst om 3-4 maanader och daa kommer det att bli en PET/CT scan igen. Men det ska vi inte oroa oss foer nu.
Passa paa och njut av livet och ta vara paa varandra!
PUSS och KRAM

I Dag.....

I dag ska pappa in till Linkoeping paa undersoekning....Jag vet inte rikitigt vad det er de ska goera. Pappa vill foerst och fremst att de ska ta ut "peggen" som han har i magen daa han inte anvender den och den er mest till besver. Men lekarna har inte velat ta ut den daa den kanske maaste anvendas igen om naagot tidigt bakslag kom/kommer. Vi faar vel se vad de seger i dag. Sedan antar jag att de ska klemma och undersoeka....?!? Tydligen saa goer de ingen CT/PET scan, de seger att det recker att kenna och om der er naagot misstenkt ja daa goer man en rontgen. Konstigt....ja,jag foerstaar att man kan kenna knoelar osv men om det skulle ha spridit sig, eller er mycket smaa, smaa, knoelar laangt in hur kan man daa ha koll paa dem?!?! Ok, jag vet att rontgen inte er bra att goera allt foer maanga gaanger...men endaa.
Ja,ja vi faar se vad de seger.

Tror ni paa gud???
Jag vet inte, som forskare saa tror jag ju foerstaas inte paa hela den her grejen att gud skapade menniskan och jag tillhoer vel de som aldrig gaar i kyrkan.... men jag tror paa "naagot" antar jag....
Men i gaar kvell saa kneppte jag i alla fall mina hender och bad en boen foer pappa idag, att allt ska vara bra! Vad konstig man er..er det bara jag som goer det i svaara stunder?!? Kenns endaa bettre paa naagot sett.
Kram till er alla

First Check-up is coming soon..

Hi,
I am back in Sweden again! So lovely to see family and friends...like always!! Will stay for 3 weeks, working hard on my PhD write up.

It is such a difference to see my dad today compare to when I was home last month!! He is still recovering well and the sleepless nights does now consist of more sleep and less wake. This results in a less grumpy and more alert dad!! His mood is much better and he spends they day actually doing things rather that sleeping. He started to paint on our house, plus working a few hours a day. I did not expect him to be soo good so soon. Its only 8 months since diagnosis and only 4 months since last treatment!!

He will now have his first check up in Linkoeping at the ENT (oera/nesa/hals) clinic next friday the 4th. He is very nervous....which is understandable. We are nervous as well....
I just want everything to be fine!!! Please.

Will give an update of how it goes, in the meantime, please keep your fingers crossed for him!

LOve from me

LONG TIME.....

I am not sure if anyone is reading this blog anymore as I have not been updating it for very long so sorry about that....

My dad is still recovering well!! The only negative thing is that the tissue in his neck is damaged from the radiotherapy and as a result he has developed severe sleep apnoea. This means that he harldy sleeps at night as the stopping of breathing causes awakenings all throught the night. Becuase of this he is very tired during the day and falls a sleep all the time, within seconds and does not function very well. He went to his consultant and she said that this could happen as a side effect of treatment but hopefully things will improve by next year.
Another thing which is not getting any better yet is his taste, he cannot taste anything and his favourite food is now full fat milk and bluberries.
However, who care about taste and apnoeas at the moment!!! All that matters is that he will keep fighting this bloody disease and keep getting better!! That is the only this that matters!!
He will go back for his first check up sometime in late August/early september so fingers crossed for that the cancer has stayed away.

Otherwise, things are fine with all of us! Had a lovely summer together!
See you soon.
LOVE from me

GOOD NEWS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

OK, I have the best feeling I EVER had in my whole life...ever!!! And my brother his best birthday present ever (its his birthday today so Happy Birthday!!!xxx).....

My dad got the phone call from his consultant:

HE IS FINE!!! HE IS OK!!!! It worked!

Oh my god, I am just crying and crying!!

No words can really describe how I feel.....so I think I leave it as that....just one simple word...HAPPINESS.

I am now going to leave work and instead of going for a run I will open a bottle of champagne!!

Celebrate together with Hanna.

I promise I will write more later but at the moment I am just a "mess of emotions"....but a bloody jolly mess!!!! ;-)

(Just on a small little note.....treatment of cancer is a long term thing and the all "clear" is not until 5 years after diagnosis. Important to bare this in mind....a new PET scan will be carried out after the summer to see if things are still good.

But this is nothing to think or worry about now!! Now is NOW and the future we can worry or deal with later!!!)

LOTS OF LOVE, KISSES and HUGS,

Massor med KERLEK, PUSSAR och KRAMAR

from ME

xxxxxxxxxxxxxxx

No news..Good news??

Still no news about the results from the PET/CT scan....

I just hope that no news are good news.....?? It just has to be!!

Lots of love to everyone from me

Propp i Lungan..ennu ett bakslag.

Foerlaat att jag inte har skrivit paa ett tag....

Her kommer en liten uppdatering.

Jag pratade med pappa i telefon paa soendagen den 10 maj och han let daa veldigt hengig och hade feber och var troett. Det visade sig att han hade faatt en propp i ena lungan... Han spenderade hela dagen (Maandagen) paa akuten och blev sedan kvar paa sjukhuset. Ennu ett bakslag.....Det tar visst aldrig slut.

Men han blev bettre under veckan och kunde skrivas ut paa fredagen, lagom tills jag kom hem! :-) Vi hade en mysig helg och var ute paa oen baade Loerdag och Soendag och pappa var med baada dagarna. Foeroevrigt saa tycker jag att han ser starkare ut, repar sig OK....och han er vid gott mod..eller vid saa gott mod som man nu bara kan vara i denna situation.....

Vi ventar ju foertfarande paa test resultatet ifraan isotop roentgen......nervoest. Synd att vi inte kunde faa svar nu medans jag var hemma. Det hade ju kennts mycket bettre....men nu er jag tillbaka i England igen och faar ta nyheten her istellet. Hoppas foerstaas att det ska vara positivt. Lovar att skriva saa fort jag vet!

KRAM

PET-CT Scan Today

My dad went to see his consultant on Monday. She said that his neck feels good and the hard “lumps” are gone and the tissue appears to be soft which is good. She said that he has managed the treatment very well….so now just cross our fingers and hope it has worked!!
She decided to do the PET-CT scan already today (Wednesday) as she is really curious to see how it worked. It’s a bit too early to say if it has been 100% successful as the treatment may work a bit more but it will give an indication how things have gone so far.
My dad is really nervous which is understandable….however, we will not get the results until earliest end of next week…..Terrible waiting…. At least I will be back in Sweden by then so it’s a bit of a good timing as I want to be there to share the news with my family…either good or bad….
Praying for good news!!!
xxxx

Going Forward.....

Things are going forward....

Dad ha been out to the island for the first time this year!! He spent the whole Saturday there with my mum and brother. In the evening they went for dinner at Gunnel and Stefans place, together with Rose-Marie and Thomas. :-) He had to have a bit of a rest at their place as very tired after a long day outside, but that does not matter, what matters is that he was well enough to join in, even if only for a while!!

He has also started to eat some normal food, but very small portions and all "mashed up", but its always something!! He has even gained some weight....2 kilos, and is very proud and happy about this.

So what about me.....I am OK. I am starting to be very busy with my PhD as I am in my final 6 months. This keeps me busy and my mind occupied...at least for now. And it is definately million times easier to be "over here" when i know things are going good "over there"!! It was much harder for example a week ago...Funny how things goes UP and DOWN....

I also manage to keep my running and yoga going, together with swimming and boxing, and I just love it...gives me so much energy......must remember to keep it up even when things are hard.

Lots of love to all of you,

xxx

Sol i sinnet...

Pratade med pappa en en liten stund i gaar paa dagen. Han faar fortfarande behaalla maten som han tar genom PEGGEN och foersoeker samtidigt eta lite mer den "vanliga vegen", blaaber med gredde, ostkaka med gredde och sylt....funkar OK. Men inget smakar tydligen saa verst gott....eller det smakar rettare sagt ingenting!!

Men de seger ju att smaken kommer tillbaks vart efter som, ibland tar det laangtid, foer en del gaar det snabbare, men foer de flesta blir det aldrig riktigt som foerr....

Men han laater mycket gladare nu, att vara hemma goer honom nog gott. Att ha mamma och bror der och att faa besoek av vennerna nestan varje dag, och smaa saker som att kolla paa fotboll och titta paa bilar paa internet etc hoejer ocksaa upp humoeret! ;-)

Passade paa att beretta att jag kommer hem igen en sveng i Maj! Om lite drygt 2 veckor.....

Sjelv maar jag ocksaa bettre! Efter naagra dagar tillbaks her i England saa har vardagen infunnit sig och allt knallar paa i en saader lagom fart....

Kendes bra att pappa trots allt var paa bettringsvegen redan ner jag for hem hit igen och att han nu er endaa bettre underlettar ju nu ner man trots allt befinner sig flera hundra mil bort, i ett annat land....

Vedret er fortfarande underbart....det spritter i benen och sol i sinnet. I kvell ska jag ut paa en laang jogging tur lengs med kanalen!!

Hoppas nu att det fortsetter aat rett haall....haller tummar och taar....

Tillbaks i England igen...

Det var med blandade kennslor som jag for tillbaks hem till England igen. Hem...hm, jag har nog tvaa hem foer jag seger alltid "hem till Sverige" och "hem till England"!!

Moettes av ett mycket vackert, vaarig och soligt England!! Apple traeden blommar vackert och bjoerkarna er saa der fint ljus groena....

Pratade men mamma och pappa igaar, allt var bra. De hade haft besoek av flera venner under dagen (soendag) vilket hade varit trevligt. De hade even gaatt pappas 400m promenad och sedan varit och tittat paa ner lillebror spelade fotboll (even om pappa hade mest suttit i bilen...men endaa). Matintaget hade gaatt bra even under resten av helgen och pappa har faatt behaalla allt. Mamma och till viss del brorsan har ju nu tagit oever ansvaret med maten... Jag fixade ju det hela foerra veckan och det kendes bra att jag kunde hjelpa till lite iallafall. Pappa skemtade och sa att de var tyverr inte like duktiga som jag paa att vara "mat-tant/sjukskoeterska och att han tyckte jag skulle komma tillbaka...

Har redan kollat paa flyg och hoppas kunna aaka tillbaks om ca 3 veckor igen.....

Han var piggare och det kenns bra att det foerhoppningsvis gaar aat rett haall...even om det gaar sakta....

Tenkte ocksaa passa paa och tacka all mina fina venner som jag passade paa att treffa ner jag var hemma, even om det kanske bara blev naagon lunch, fika, liten oel, eller en herlig middag.....betyder saa mycket! Ni vet vilka ni er saa puss paa er!!

Och ett tack till alla mamma och pappas venner! Om ni bara visste vad ert stoed betyder, baade foer pappa och mamma men even foer mig och bror.... Som ner en skoeterska fraagade om pappa vill prata med naagon: "Nej tack, jag har min fru, min familj och alla mina venner om jag vill prata....det recker foer mig!"

Kerlek och Kramar till er alla och hoppas ni faar en bra vecka!

EASTER WAS HARD

Easter was strange. I came home just before Easter and looked forward to spending time with my family, see friends, eat yummy easter food, stuff myself with sweets from the easter egg, spend time at the summerhouse on the island and I wished for warm sunny weather. Funny enough I actually got all these things, but it was still not the same....my dad could not come back home and therefore unable to spend Easter with us.

We went to the hospital instead to visit him on Saturday (Påskafton) and for me that was heartbreaking. I had not seen my dad for over 3 weeks and he had lost a lot of weight recently. For the first time; he looked ill....skin was grey, lost over 2 stones in total ( över 12 kilo, 15 kg för att vara exakt), and I am sure the hospital setting did not help much...his too big hospital clothes and drip. But he looked nothing like the dad I know and suddenly it was an old man infront of me. It was hard.

His mood was down as well. The treatment went so well and he was so positive, he looked forward to the recovery which started well and then this happened. First infection in the PEG and then some strange reaction to the food......he could not keep anything down and after over a week with basically nothing more than a nutrition drip (närings dropp) it showed both physically and psychologically.

By Tuesday he was well enough to come home....or at least to try to. Wednesday was hard.... it felt like I was feeding him through the PEG constantly from 7am to 9pm and we still only managed 1500Kcal and most of it he did not keep anyway, as kept throwing up! Its hard to see your dad this weak...but I try to cope the best I can.

Thursday: Much better day, stay positive!! After talking to the pain unit at the hospital, dietician and his consultant (över läkare) we decided to try something different. He got a new medication preventing him from feeling sick, and they will reduce his morphine patches from 100mg to 75mg (as pain in throat is not the main problem at the moment anyway). We also stoped with the food he is suppose to eat and tried different things instead. Filmjölk (like yoghurt), nutritiondrinks, soup...all through the PEG and blueberries with full fat cream and blueberrysoup the "normal way". We also tried a bit of bread just to get the chewing going. My dad did his best to not only lay down, instead he sat up, walked around in the kitchen a bit and we even walked outside in the sunshine (even if only managed 400m).

All these things together worked and he kept all his 1750Kcal that we managed to collect!!! Yippiieee!!

How can one day make such a different?!? Mood better, looked better and yes its a bit of my old dad coming back! Fingers crossed that today is good too!

Its a contant battle with the food....but we will get there, together!!

Now its time for our 400m walk in the sunshine again! :-)

LOTS OF LOVE AND HAPPINESS TO EVERYONE

HAPPY BIRTHDAY

Today is my dads birthday! 63 years old. GRATTIS!!!
Unfortunately he will not be able to celebrate much. After his visit to A&E yesterday, he is now admitted to the regional hospital in Linkoeping again. I don't know for how long yet. I am going home tomorrow and hopefully he can come home too for the Easter weekend.

PUSS

Another Battle...

So yes, treatment is over and yes my dad were allowed home on Friday but now another battle starts. The recovery process....It may sound like a straight way a head but no....Its a battle both physically and mentally. Both of above for my dad while the latter is for the rest of us. We have now moved away from that "treatment bubble" which in a funny way felt secured....you had an aim and a focus: get throught treatment and with help of the daily support of all the wonderful nurses and doctors at the Oncology Centre. But we are sort of on our own now, and what happens next???

Mentally its hard, as now you start to think about; Has it worked? What if it has not worked? When will we find out??

Physically its hard for dad; these weeks are suppose to be the worse. He is on a daily high dose of morphine to ease the pain at least a bit. When my mum asked he said his pain is at 7 at the moment on a scale from 1-10 (and that is with all the morphine). He also has an infection from the PEG surgery and is taking antibiotics. He started to get fever yesterday and and got worse this morning and is right now in A&E (akuten).

Will update when I know some more.

Das is coming home on Friday.

My dad is still in hospital but is doing OK. They think he will be able to come home on Friday so that is good news! I cannot wait to go home for Easter to see everyone and fingers crossed that my dad is well enough to stay at home. Only one week left to go and then I will be there!!!
xx

LAST DAY OF TREATMENT!!!

Today is my dads last day of treatment!! 7 weeks and 34 treatments in total is now over and done with!!! Well done dad, you have been so positive and a real fighter!!
Its been hard in the last week but I talked to my mum yesterday and she said that dad is a bit better compare to at the weekend and beginning of the week.
He is still in hospital but will hopefully be moved to another smaller hospital (in our hometown )instead now when the treatment is over.

Dad is in hospital

Surgery went OK, but my dad is not very well at the moment. He came home from the hospital on Saturday but the weekend was a bit of a struggle. He went back into the hospital again today and will now stay there. It’s a bit difficult to grasp when you are not there next to him, seeing him…
I had such a lovely weekend in the sunshine, BBQ, yoga, long walks, mountain bike ride, drinks with friends and its almost like I feel a bit bad and guilty that I have enjoyed my weekend when I found out that dad had such a hard time….
But guess you need the positive and happy times to save energy for the harder times????

I so wish I could be there right now….not only to support dad but also for my brother and mum. I booked my ticket to go home again but its 2 weeks left and it feels like forever…

BIG HUGHS and lots of love to everyone!!!

Me

Today...

Today is surgery day....I am thinking of you dad!
I love you so much and I wish I could be in Sweden right now.
Talk soon.
M

Pretty low at the moment...

Week 5 past without major problems. I saw my dad on the 10th as I were coming home a day earlier before I went skiing for the weekend as I really wanted to see him even if it was just for a day! He looked OK, lost a bit more weight and also a little bit of hair in the neck region. This is something he was not happy about!! Both mum and I said that it does not matter but he kept looking in the mirror to see if he could see anymore evidence of hair loss….
I talked to him again on the phone yesterday which was start of week 6. He is now feeling pretty poorly since Sunday and is going to be admitted to the hospital tomorrow. They will do the surgery to insert the PEG on Thursday and he will probably stay at the hospital over the weekend. It has gone so well until now so guess we should be happy about that, but it appears that maybe harder time are in front of us…..

So what about me; I feel pretty low at the moment and close to tears pretty much all the time…. I think I have coped very well since treatment started as you are sort of in a bubble, focused on the treatment only and not looking forward to the future too much. My dad has done so well which of course also made the whole journey so much easier. But now it starts to feel a bit….

Halfway there!!

We are now more than halfway!!
Here comes a little update for this week.
My dad has now done 4 weeks of treatment!! That means 4 chemotherapy and 20 radiotherapy sessions and he is now more than halfway through his treatment! He now got 3 chemotherapy and 14 radiotherapy sessions left.
He is in a little bit of pain but not too much and can still eat even if it’s a bit of a struggle. He has not lost any weight either this week so that’s good. However, he talked to the doctor a couple of days ago and he wants to put in a gastric feeding tube, a PEG. He is doing this as a precaution as they believe it will become a struggle to eat within the next week or so, and this is therefore an easy way to get plenty of nutrition, which my dad needs.

If you want some simple info on a PEG please check below.

http://en.wikipedia.org/wiki/Percutaneous_endoscopic_gastrostomy

I talked to my dad earlier today and he is in a good fighting spirit, even if a bit tired.

I love you so much dad and well done so far!! Keep it up.

:-)