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.

:-)

Surprise- I am in Sweden!

Surprise, I am in Sweden!! :-)
Took a flight back home on Thursday night and my bother came to pick me up form the airport. My dad did not have a clue as he thought I would come home in a couple of weeks (which I still will). It was so nice to just walk in, say HI and give him a big hug!! He looks fine and not ill at all at the moment, and that was a nice suprise for me and felt good! On friday I went into hospital for final treatment of week 3. It was a bit scary at first to see when they put the mask on and then locks into the bed...does not look too pleasant.... But my dad says its not too bad and the whole thing is over in just 10 min or so.

Had a lovely weekend and was so good to see everyone and lovely to see that my dad is still doing great! He is just a bit tired and are having a nap in the afternoons and also a bit grumpy at meal times, which is understandable when nothing taste of anything!

A surprise!

Talked to my dad today and he sounded very tired. Its the Chemotherapy on Tuesdays that makes him tired for a day or two after. He said the mouth is now soar and blisters have started to come. They have "upgraded" his morphine plasters so the pain is not too bad so far.

Me, my mum and brother have a little suprise for him tomorrow or possible Friday.....hopefully that will cheer him up a bit!! Will be great and hope he likes it. Cannot tell what we arranged/fixed yet but will let you all know by friday.....Yip!

Ups and Downs

Last week was a bit of a mixture, as struggled a bit in the beginning of the week....but it all ended on a high note! Talked to my dad on Friday and he sounded much better than he did on Tuesday and Wednesday. He was not sick from Chemotherapy this week so that’s good. 2 weeks has now passed and he has only lost 1 kg, also great news! You see, loosing weight when you are battling cancer is no good....so keep it up dad!! He said he tries to eat as much as my brother plus taking these nutrition drinks which has 500 calories in 1!!! So he keeps eating nutrition drinks, cakes and creamy sauces even if it now does not taste of anything. He has lost most of his taste by now and his tongue is a bit numb. But we all knew these side effects were coming….and as long as he is not in too much pain or being sick then it feels OK.
He has been OK for the whole weekend and even been to work a bit! That puts a smile on my face and makes me feel good! Bring on week 3….

Struggle...

Today is a bit of a struggle. I know my dad has both Chemo and Radiotherapy today so it’s a hard day for him, and I am tired after working 78 hours last week and with tiredness come emotions. I have been so busy so sometime its almost like it feels that my dad is not ill, almost like you do not have time to think….but then days like today comes and hits you hard. Tears….But guess you need days like this too, when you fell sad and angry, and when you let it all out.
Cannot wait for the day to be over and then go home and call my dad to see how things went today.

Vecka 2

Har jobbat sena kvellar och netter med endast 3 timmars soemn varje dag de senaste 4 dagarna......Inte bra, det borde ju jag veta som er soemnforskare, paa riktigt....
Jag er troett men klagar inte!
Pappa har maatt bra hela helgen och jobbade en stund i Loerdags. Han tenker foersoeka jobba saa lenge han kan och orkar.

Och nu er andra veckan her. Daa tutar vi och koer!!
Yttligare 5 straalnings behandlingar och en cellgifts behandling.
Kempa paa pappa!

Kram

Have a nice weekend!

I just want to wish everyone out there a lovely weekend!

Life is too short for drama & petty things,

So...kiss slowly,

laugh insanely,

love truly,

and forgive quickly.

Lots of love from me,

Malin

P.S. Wow, I managed to remove password so now you can see the pictures (i hope??)

Beginner Blogger....snacka om nyboerjare...

Verkar som om jag har lyckats skaffa loesenord foer att se bilder nedan och detta var ju inte riktigt meningen.....Jag ska foersoeka faa bort loesenordet!!

Hanna, nu VET jag vad du menade med LOESEN....fattade inget ner jag saag sms....he,he!

Hm....I have in some kind of weird way "malinised" even my blog as appears like I manage to create a password in order to view the pics below...a password that not even I have....Oh dear! I will get on this case ASAP and hope to show you our little sauna and ice "vak"soon.
Bare with me.

:-)

Treatment have started

My dad has now done 4 radiotherapy sessions. "Only" 30 more to go, so the countdown has started!!

The radiotherapy is going OK so far and no problem. On the other hand they told us that the first two weeks are normally not too bad and that it starts to get worse after that.

He had his first chemotherapy session on Tuesday too. It took 5 hours. First 2 hours with just liquid pumping around his body, followed by one hour of chemo and then another 2 hours of liquid. This is to help the kidneys and the liver apparently. He felt fine both tuesday and yesterday but today he has been ill. Throwing up and not able to eat much.... I just talked to him and he sounded a bit tired, I am just hoping he feels a bit better tomorrow!!

I love you dad, keep it up, soon its weekend and you can relax.

xx

A Saturday in Sweden

We decided to walk across the lake out to the island as the ice was almost 30cm thick! The latter was later confirmed when we cut a hole to create a "vak" (swimming area), thick ice = heavy/hard work. We then started the little wood burning sauna and the thought was to jump in the ice cold water after been sitting in the sauna for a while....Hm.....I never had a swim in a freezing lake in the middle of the winter before, but the thought of it sounded fun. However, the reality was that the closer I got to jump in, the more I started to think that maybe it was not such a good idea after all.... But if you do not try you will not find out ,and in I jumped!! WOW!!! It was great! MAD but GREAT feeling!!

The little Sauna...

A beer each incase we needed to cool down even further...hm...NOT needed. Brrrrrr.......

Working hard with the drills....

It turned out to be a lovely day which ended with a lazy evening, watching Eurovision song contest and with some nice food. On Sunday we all went for a walk followed by "fika" (coffee and cake) in front of the open fire. And all in all, it was a great weekend and so nice to spend some time with my family.

:-)

A visit to the Oncology Centre

Friday 7th Feb
This was the day when my dad was going to do the test run of the mask.
We went in to the hospital in the morning. First on the agenda was blood test. My dad needs to do a blood test every week before he does his chemotherapy which from now on will take place every Tuesday. When the nurse came to get him it suddenly hit me and I started crying. It is so hard to understand that my dad is so ill when he still looks so great….. I looked at him when he walked away and that’s when the tears came….My lovely caring dad, the best dad I could ever wish for!! Once he came back I was OK and tears gone and it was time for the oncology centre.
If an oncology centre is allowed to be called nice, well then this is nice. It is a new large building, very Scandinavian design with a lot of wood and windows. The waiting area for the radiotherapy department was very warm and welcoming and the people working there just amazing. OK, I am not talking about some kind of hotel here, I know, but I do believe every little detail is important and small things that may sound silly can make a difference. The waiting room had tea/coffee and cookies and just to help your self, they also had nutrition drinks for patients.
We sat there for a while and I suddenly realised that all these people around me have cancer (well a few may be relatives like me). There are so many and all with different stories to tell.

We were taken into a room were the test run was going to take place. The mask was already laying there, green plastic made of some kind of net. The doctor came out (same doctor who told my dad he got 60% chance), he was as serious and though as last time we met him. He explained that the treatment will be extremely aggressive, this will be a hard time, side effects are many and severe…..anything positive, anyone????
OK, the main thing is that the doctor is good and experienced as then he can be as serious as he like. And he is good, apparently very good.
After this talk I had to go out while they did all the scans and setting up the machine.
My dad was done after around 30 min and then we got to see a nurse. And this is not just a nurse, this is my dad’s “own nurse”. If the doctor was serious and though, the nurse was sweet and positive. She was just great! She will be my dads contact person during this whole process and he can call her any time. She explained that there will be a whole team of doctors and nurses carrying out the treatment. She said that there may be a lot of side effects but it’s not for certain as everyone is different and that we cross these bridges if and when it happens. My dad will also meet a dietician, who will help with the right food etc, and he will also meet the specialist nurses from the pain unit and they will work closely with the oncology unit to make sure my dad gets the best pain relief when needed.

After this we went back home and things did not feel too bad. We are all positive and my dad just wants it all to start now!

The evening was spent with the whole family together with some good friends and nice food! :-)

Going Home To Sweden

Just one day before I am going home to Sweden!!
Tomorrow night I will see mum, my brother and dad, cannot wait!! :-) Its just for a weekend but its better than nothing. On Friday I am going into the Hospital together with my dad to visit the oncology centre and do a "test treatment" using his new mask.
The rest of the weekend will just be spent together with family and friends and a lot of nice food.

First Radiotherpy treatment is on Monday and first Chemotherapy is on Tuesday.....
But lets not think about that now and just try to have a nice few days together instead.
Love to everyone,
from me

Dreaming away...

Working overnight and found these pictures on my computer....some summer pictures from Sweden.....to light up the winter darkness....


Ok, Dad and I look a bit "weird wide in our faces" above....but sort of liked it anyway...

Just another day

Friday.....
Talked to my mum and dad and the week has been OK. My week has been OK too. It started off pretty nervous on Monday and Tuesday before we got the results from the scans. After the good news that there were at least no more metastasis found, it felt a lot better and the lump in my tummy was sort of gone. I went to tell my lovely friend Sue and I just bursted into tears....it was such a relief after I have been so worried for over a week.
So it was with a bit better mood that I went up to London on Wednesday for a late birthday treat. We went to see Phantom of the Opera. Yes, I know its not the newest of musicals but it was on the top of my list and I absolutely LOVED it!!! LOVED IT!! I told my dad about it and I promised to take him, mum and hopefully my brother too to see it again . Maybe after the summer......if things are good by then.

I hope you all have a nice weekend.
Love from me

BRA DAG/ GOOD DAY

I dag är en BRA dag. Jag lämnade universitetet vid 7.30 i morse efter att ha jobbat hela natten. Jag kom ut och möttes av ett rimfrost vackert landskap, blå himmel och en otrolig SOL som precis hade kommit upp. Den var så där vackert stark, klar och STOR som den kan vara ibland…. Det låg dimmslöjor här och där, då trots att det var någon minus grad så är det alltid så fuktigt här i England. Jag stannade upp och tog några stora andetag och andades in den friska luften och tänkte…..Hur kan en sådan här morgon bli en dålig dag??? Nej det måste bara bli en bra dag!!
Kom hem och kröp i säng, men kunde inte sova så bra (trots att ha jobbat tre nätter i rad), vid lunch så gav jag upp och tog fram min mobil. 2 missade samtal från lillebror…snabb analys, bra eller dåligt??? Måste vara bra, får inte vara något annat! Stor knut i magen....Ringde och min älskade underbara bror var cool som en filbunke! Inget NYTT!! De små cancer jä*#arna har inte stuckit i väg!!!! Bara de metastaserna i nacken som vi redan visste om men inget i framför allt lungorna vilket annars vore ett av de vanligaste stället för tonsil cancer metastaser (förutom lymfkötlarna på halsen då). BRA!! UNDERBART!! Nu ska vi tuta och köra! Pappa är laddad och masken är gjord.
Har precis pratat med honom och han har ätit en god grädd bakelse (de har sagt att han ska äta mycket fett innan behandlingen startar) och jag,…. Ja, jag ska ut på en lååång löprunda.
Jag älskar dig pappa.

If you do not understand the very popular Swedish language:

After a beautiful sunny morning I was positive that this would be a good day…..it just had to be!! I had worked night and went to bed to try to get some sleep. It did not work very well and by lunchtime I gave up. Checked my phone and two missed called from my lovely brother. Bad or good??? I phoned, and it was GOOD news today! They had just got back from the oncologist and the scan results showed NO further metastasis (than in the lymph nodes in neck that we already knew about). So my dad is ready (as ready as you can ever be for something like this) and his mask for treatment is now made!
Cannot wait to go back to Sweden next week to see everyone and to see my dad before the treatment start! Cannot wait to give him a massive hug and tell him how much I love him!!

Pappa,

Pappa, jag håller tummarna för dig i morgon!!
Kram

Waiting for Results....

No results from PET-CT scan yet.....
My dad is going in to the oncology centre tomorrow to start making the mask used for his radiotherapy and I guess we will find out the results then.
My mum and brother is going with him too. Unfortunately I cannot come as I am back in England at the moment, but I have sent a long list of questions for my mum to bring with her!

PET-CT Scan

Friday 16th Jan

The week was pretty busy and both dental examination plus jaw and teeth x-ray was done. The decision is that one tooth will be pulled out, every thing else were fine.

So in the end of the week it was time for the PET-CT scan and my dad and I went into the hospital. This is a special scan which can effectively detect any malign tumours and metastasis in the body.
It has been shown that PET-CT scan is better and more sensitive compared with when a PET scan and CT scan are done separately. A PET-CT has a PET camera and CT scanner in the same machine and is mainly used on patients with oncology diseases.

In simple terms it works like this:

• The patient (in this case my dad) is taken into a room. Here they check his blood glucose which was fine (5.2mmol/L). This is done by a simple finger prick. Then they inject a trace substance such as FDG intravenous.
• My dad then had to sit in a room which should be pretty warm and wait for 1 hour so that the FDG has enough time to become concentrated to cancer tumours and metastasis, while eliminated from other tissues in the body. This is due to that cancer cells have a higher uptake of FDG due to higher metabolism compared to other cells. It is important that you have not been eating for at least 4 hours before the examination. This is so that the FDG does not have to compete with the body’s own glucose (blod socker) about the uptake to the cells (that’s why they take a blood glucose test before).
• After an hour he was taken into the room with the PET-CT machine. They then start with a CT scan which was taken from thighs up to and including the skull. This is followed by the PET camera which can read how the FDG has been taken up in different tissues.
• The whole scan takes around 30-40 min. (quicker then when PET and CT are done separately).
  
  After this was done we could go back home and wait for the results.
  Fingers crossed that there are no further metastasis.

Speciellt till er svenskar:
2007 så fanns det 5 PET-CT utrustningar i Sverige. De finns i Linköping, Uppsala, Lund, Malmö och Stockholm. Vet ej om någon mer har tillkommit på senaste året…Dessa används fämst för cancerdiagnostik, dvs för att hitta elakartade tumörer och metastaser. De används också för att följa olika typer av cancerbehandlingar och vilken effect dessa har och för att diagnostisera misstänkta återfall.
Kostnaden för en PET-CT utrustning är ca 20 miljoner riksdaler, men för att kunna driva den så behövs bunker, hus, kemiutrymmen med production etc och detta kostar totalt ca 60 miljoner. Det kan jämföras med de 10 milljoner som en CT installation kostar. En PET –CT undersökning kostar ca 17300 skr. En ENDA….under den tiden vi var inne så var det minst 5-6 stycken som undersöktes och detta betalar man inte mer en max som ett läkarbesök…..
Jag kommer aldrig ifrågasätta att vi betalar mycket skatt i Sverige. OK, nu bor jag ju inte i Sverige för tillfället, men den dag jag flyttar hem så betalar jag med glädje!!

Treatment

Friday 9th

Ok, back to BLACK Friday 9th Jan.
After the diagnosis we got told a bit more information from my dad’s ENT specialist. She told us that she had removed the tonsil on the side of my dad’s neck and that was thought to have been the primary tumour. Unfortunately my dad had gone with this for some time and there were metastasis (daughter/sister tumours or whatever you would like to call them). It is pretty common that this type of cancer is diagnosed late and there are therefore metastasis already formed in around 70% of all cases.
However, my dad did not only have metastasis on the same side as primary tumour had been, he also has metastasis on the other side of his neck…. This is not good.
On a positive note the scan of the lungs had found nothing!!!
But to be on the safe side they booked a PET-CT Scan in order to see if there are any metastasis anywhere else (more info about PET-CT scan later).

So to the treatment:
My dad will have radiotherapy (strålning) once a day for 7 weeks, a total of 35 sessions. He will also have chemotherapy (cytostatika/cell gift) once a week during these 7 weeks. We were told that this is an extremely aggressive treatment and the side effect may be severe and that is something to be aware of. The oncologist told us that my dad was lucky in that way that they are working very closely with the pain unit and that this unit is the best in Sweden.

The plan is to start treatment Monday 9th Feb. This may feel like a long time to wait and I did also question this straight away. They said that it is natural to feel like this, you want them to start NOW, there and then, and preferably YESTERDAY if you could!!

However, they explain that the reason for this wait of four week is that they need to make sure that my dad gets the best possible treatment. He will undergo dental and jaw x-ray, he will have his PET-CT scan, he will have a dental examination to decide if any teeth need to be pulled out before treatment start, they need to create the mask (takes around 2 days) which he will wear during the radiation, and then they need to do another scan with the mask to see that they will target the metastasis in an exact way. (I will give you more exact info about this once treatment has started.)

After all this information we took the car home…..

Diagnosis- Tonsil Cancer

Some facts:
There are around 200 different types of cancer. My dad got diagnosed with a very rare type of cancer called Tonsil Cancer/Tonsillar Cancer. Cancer of the tonsils can be of different type. Squamous cell carcinoma is the most common type, while Lymphomas of the tonsil are the second most frequent malignancy. My dad has squamous cell carcinoma.
Around 20-30 years ago, the vast majority of patients with this type of cancer were very old men who had spent their lives smoking heavily and drinking hard (hm…this is hardly the way I see my dad!!). However, this has changed and recent research has confirmed the shift in the dominant demographic for tonsil cancers from older smoking men to a bit younger healthy non-smoking men. For example, smoking has decreased substantially during the last 30 years in Sweden. However, the incidence of tonsil cancer has increased in the last 30 years in spite of reduced prevalence of known risk factors such as smoking. This can be explained by now known other risk factors such as viruses. It is also thought that there may be a connection between the disease and inflammation. Chronic inflammation in mouth, nose or throat may therefore also increase the risk.
Even food may play a role such as deficiency in fruit and vegetables.
However, the causes of this type of cancer are not known by detail.

So where do my dad fit in?

My dad is not VERY old, he is 62 and has never been ill until this year, infact always good results at health check ups. He does not smoke and does not drink much either, (just the normal glass of RED together with dinner at the weekends, and a glass of his finest whiskey now and then). Oh, but one thing, my dad is not overly in love with vegetables!! Should he have been eating more carrots and broccoli!?!?! ;-)

No, I don’t think its any point of speculating about causes….its here, and this is NOW and we have to look forward and together we will beat Mr Cancer.
As my dad said: “I just have to make sure I am within these 60%......”

A good link about fact about Tonsil Cancer(even if its more focused on prevalence of HPV in Tonsillar Cancer) is:http://diss.kib.ki.se/2008/978-91-7357-587-4/thesis.pdf

Och om ni hellre vill läsa på svenska så finns lite information på: http://www.cancerfonden.se/templates/Information____47.aspx?fulltext=1

Just a note: When you read about cancer on the web, please remember that the research goes forward constantly and treatments are improved and survival rates goes up. Also remeber that chances of survival and what is best treatment in each case will be specific for each patient.

Kom ihåg att när du läser om cancer på webben så ska du alltid tänka på att forskningen går fort framåt och behandlings metoder ändras och förbättras. Tänk också på att chansen att bota och vilken behandling som är bäst varierar stort och är specific för varje patient och kan skilja mycket från statistiken som finns.

Facts and Feelings

Good Evening,
The blog is now up and running. It feels like a good decision!
I will write about facts and feelings.
Facts: I will try to explain background, diagnosis and treatment. I may here have some help of my degree in Biochemistry where I studied both Cancer Biology and Pathology and Medicine for example. I may also have help by my PhD which means I know how to search for the right papers and publications. However, I am NOT by any mean an expert on any type of cancer as my PhD is not in this field at all! I would just like to point this out. However, I will try to show links here on the blog to good scientific papers or government WebPages etc
Feelings: I will write both about my dad’s feelings and my own feelings. And I will try to explain as good as I can about how we all experience this journey.

My Dad Has Cancer

Friday 9th Jan 2009.
Things proceed quickly this week. We went in for biopsy (vävnadsprov) and x-ray on Monday 5th. Back into hospital on Tuesday afternoon and my dad stayed overnight to prepare for surgery the next day. Tonsil (halsmandel) was removed and surgery went well. My mum and I (my brother had to stay home due to a cold) went in on Friday 9th to pick up my dad and also be given his diagnosis.
Nothing can prepare you for this and no one who has not been in this situation will understand how it feels…..
We went into this room with 7-9 different doctors sitting in a row (can’t really remember how many exact as it was all a bit of a blur). My dad sat down in a chair in the middle while me and mum sat on the side.
I can honestly not remember what they said except for; you have cancer, it’s aggressive, we give you 60% chance…..
ANY QUESTIONS???
Of course we had questions, probably millions of questions but not there and not then….body felt empty and mind blank….


Varje år ställs drygt 50000 cancer diagnoser i Sverige. Runt var och en finns människor som kommer påverkas av sjukdomen. Hundra tusentals livskamrater, barn, släktingar, vänner, grannar och arbetskamrater. Om någon är i en liknande situation eller bara känner att man vill läsa lite, gå in på: http://www.cancerfonden.se/upload/Dokument/Patientbroschyrer/narstaende_cancersjuk060524.pdf

Create a blog

The idea of creating this blog came into my head after talking to my beautiful friend “Swedish Hanna”. She told me about people writing about their illness or about a friend or a family member who is ill. I went home and looked and there are so many, and I found that it helped me a bit by reading other peoples stories, what they have gone through and about their fight to survive. Specially a blogg by a man called Olle who had same cancer as my dad and survived. Some of you may find it strange that I will share and write about such a private thing here in cyberspace. But I am doing it for me as writing makes me feel a bit better, for my friends back home in Sweden (which I cannot see often enough) who may just want to keep them self updated from time to time, and for other people who may be in a similar situation and may feel that it helps a bit by reading other peoples stories, just like I do. I will write in English, Swedish and most likely in “swenglish” as I will not bother about spelling and grammar as this is just about life, just as it is.....