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...
Saturday, January 31, 2009
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...
Friday, January 30, 2009
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
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
Tuesday, January 27, 2009
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!!
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!!
Monday, January 26, 2009
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!
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!
Friday, January 23, 2009
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.
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!!
Thursday, January 22, 2009
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…..
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…..
Wednesday, January 21, 2009
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%......”
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.
Tuesday, January 20, 2009
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.
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
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
Monday, January 19, 2009
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.....
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