The diary

• Radiation Therapy                     33/33 –              Done
• Chemotherapy (Paclitaxel)    4/5 –                   Done
• Pain                    6/10
• Mood                 7/10
• Energy               4/10
• Side effects     9/10

The day i have looked forward to for 2 months finally materialized.

The radiated areas on my neck is quite red/violet, so i will probably get some kind of burn degree. My wife and my kids were all with me for the last accelerator treatment and the personel were so kind to show my youngest one how it all worked, in order to demystify the treatment.

After my last treatment, my beloved wife had arranged a surprise for me! – a lot of friends and family had came to the Hospital in order to celebrate i have finished treatment, they brought cake and champagne, i was thinking about being social and have a drink with them trough the tube 🙂

It was very nice and good to see them all, afterwards i went home and directly fell asleep in a good mood, even though i know that the next 2 weeks could be the worst.

• Radiation Therapy                     26/33
• Chemotherapy (Paclitaxel)    4/5
• Pain                    6/10
• Mood                 6/10
• Energy               4/10
• Side effects     8/10

The effects of the treatment is setting in with full effect. The pain is getting worse, so I am getting morphine both as pills and low dose patch

Morphine has no side effects for me while using it, however it does not remove the pain,but makes it bearable.

My skin at the neck is slowly turning violet and is irritated, I daily use aloe Vera on the skin, but it can only limit the degree of burns.

The phlegm is going from merely being annoying to have a crippling effect, it is impossible to have a longer conversation without spitting every sentence out, telephone conversations I totally avoid.

A few times a day i have to throw up the phlegm, especially when i am doing anything which resembles exercise, like bycicling.

To get to the hospital is a matter of planning what to bring to spit in, when i am going with the train or bus.

The smell of the phlegm is also terrible, especially for myself but also for my nearest family. My youngest daughter does not want me to sit beside her at sleeping time, I do not blame her at all.

I wake up multiple times at night to spit,clean my mouth and sometimes throw up.

I react by isolating myself socially as I am not able to converse, just nodding.

• Radiation Therapy                     20/33
• Chemotherapy (Paclitaxel)    3/5
• Pain                    5/10
• Mood                 7/10
• Energy               5/10
• Side effects     7/10

After i conferred at my weekly meeting with my doctor about the effects of tinnitus, he prescribed another chemotherapy called Paclitaxel.

I will never say that chemotherapy medication is a good experience, but the effects of the new medication were marginal compared to Cisplatin, my tinnitus disappeared and my loss of appetite was removed. Sure i had the same flu effects and pain, but my mood was much better and now i had the tube , i got my needed proteins and my fast weight loss was stopped.

• Radiation Therapy                     14/33
• Chemotherapy(Cisplatin)       2/5
• Pain                    4/10
• Mood                 4/10
• Energy               5/10
• Side effects     6/10

The effects of radiation are slowly setting in, my neck is more sensitive and my gums are swallowed. From the effects of the Cisplatin were out of body till a new round , i had roughly 1½ day which i enjoyed.

As my tinnitus was getting worse, i mentioned it at the weekly meeting with the doctor and we agreed that i could try one more round and if the tinnitus were still worse, then they would look for an alternative.

Second round was much worse, the flu-effects hit hard, the swallowed gums were even worse and my loss of appetite was magnified, . For three days my only intake was fluid and bananas, i lost about 3 kilos. The weekend was terrible for me and my poor family.

I could feel my limbs were cold due to lack of food and my mood was really dark because i really tried, but could not manage to intake any food. The tinnitus were continuing. When the effects worned out, i managed to eat some food, which immediately helped my mood.

I told my wife that if i did not eat anything or little again for the next round chemotherapy, i would ask for a NG tube also called a nasogastric tube,which is a tube that carries food and medicine to the stomach through the nose. Contrary to the US where the PEG tube is much more used, in Denmark, the NG tube is primarily used for shorter treatment durations like tonsil cancer, when your food intake is too low.

The NG tube has it advantage in it is very easy to “install”, it takes about 1 minute and i did not feel unwell at all. The disadvantage is that it is very visible in your face and the tube in the throat is annoying when you sleep.

Even though i did not like to present this very visible “add-on” to my kids, my mood was relived now that i could bypass the mouth and i could inject food even when i was not hungry.

• Radiation Therapy                     8/33
• Chemotherapy(Cisplatin)       1/5
• Pain                    3/10
• Mood                 7/10
• Energy               6/10
• Side effects     2/10

The first week with all-inclusive on radiation and chemotherapy, the radiation is working hard to numb my taste buds, but otherwise no noticeable pain.

The first time of Cisplatin is a different manner, i went to the Hospital to get my first dose, it takes about 3 hours from i arrived till i left. Cisplatin is administered through a vein and expect the little sting, i did not feel anything before the next day. I was given a whole lot of medication.

• Some unknown medication which should alleviate the worst side-effects from Cisplatin the first 3 days.
• Prednisolone to counter the nausea effects,  Cisplatin has a very bad reputation for.
• Calcium pills which counter the calcium loss effect Prednisolone has.

The next day i felt the effects of the chemotherapy, i did not feel any nausea, but my first experience happened when bought a durum roll and the meat tasted horrible like metal.

The loss of appetite was not in full effect, but the Cisplatin made most food taste horribly, so i was primarily eating baked potatoes and mashed potatoes from then. I began to realize how large-scale and on how many aspects this treatment would hit me.

• Radiation Therapy                     2/33
• Chemotherapy                           0/5

• Pain                    2/10
• Mood                 8/10
• Energy               8/10
• Side effects     1/10

Now the fun begins, first i have a schedule at the Hospital for fitting a mask i need to wear during the radiation therapy in order to fix my head during treatment, so the radiation only affects the specified area.

It takes about 15 minutes and is not unpleasant, some sort of warm wax is fitted around your head and then you just need to wait for it to harden.

Secondly i needed one more CT/PET scan in order to specify the location for the accelerator , this scan is shorter than the first one and the contrast fluid is much less unpleasant.

The first radiation therapy works just as promised, i can not feel anything and my taste buds are not affected, yet…., 32 more to go.

• Pain                    4/10
• Mood                 5/10
• Energy               6/10

The second week after surgery was also quite painful, but bearable. I went to my first meeting with the Oncologists at the Hospital, which confirmed that i had HPV tonsil cancer and it was found at a very early stage, so even when cancer sucks , my case was a very light case and survival prognosis were more than 90 pct. if i did the treatment.

Nevertheless they did not hide that i was in for a rough and intensive treatment, it was 6½ weeks, where i had to go to the Hospital 6 days a week to receive the 33 doses of radiation therapy and 5 times chemotherapy.

As the Hospital was quite far from my home, i had to spend 2 hours alone on transportation.

• Pain                    8/10
• Mood                 3/10
• Energy               3/10

The surgeon gently waked me up, i felt i just had felt asleep and was quite clear in the head without nausea. I could clearly feel that they had worked in my throat, but the medication softened the pain and it was bearable.

My wife came and i asked what time it was, when she told me it was late afternoon, we both knew that the surgery had not gone according to the pla as the surgery was scheduled to 2 hours.

Shortly after the surgeon came and told me the bad news, the lymph node was infected with cancer which had spread to the corresponding lymph node.

They had taken tissue samples in my mouth, gum, throat in order to locate the source and they found the cancer origin in my left tonsil.

Due to my profile of being quite young, healthy and non-smoking, the surgeon told me that with all probability it was HPV tonsil cancer, which despite being serious, is much less life-threatening than regular tonsil cancer, however, they needed to test the tumor in order to be sure.

It was off course a chock and my nearest family was shaken, i now knew that the surgery was only the beginning of a longer battle, which would last months.

The first week after surgery was quite painful, but not unbearable, i could handle the pain it with Paracetamol, i woke up some nights to spit a little blood out, but ice-cubes were very relieving.

• Pain                    None
• Mood                 5/10
• Energy               Usual

I was preparing mentally for the surgical operation, i had never been in full narcosis before and the thought scared the hell out of me.

As the control freak i am, i did not fear pain, but i really feared not to wake up again, no matter the fact that full narcosis is totally safe.

I had a consultation with the surgeons where the told me the procedure and what side-effects the surgery could cause, it was primarily a small risk for some nerve damage to the shoulder.

However contrary to the doctors at my local hospital, the surgeons said it was not likely, but they would not totally exclude the risk of cancer.
This was a general frustration i experienced during the examinations before the surgery – different doctors looked at my case and they gave me quite divergent assumptions, which resulted in confusion and uncertainty.

If the surgery went according to the plan, it would last about 2 hours, however if they found anything malignant in the cyst, they would remove my tonsils and polyps besides taking samples in order to locate the source of the malignancy.

I went to the hospital for the surgery in the morning, anxious for the full narcosis, but the narcosis went very well and was not unpleasant at all, i slept very quickly and felt nothing at all.

• Pain                    None
• Mood                 9/10
• Energy               Usual

Hooray! – The results from the PET/CT scan showed no indicative signs of cancer in my body, there was a very small yellow indication around the infected lump in the scan, but the doctors told me it was not indicative of cancer and probably lighted up due to the infection in the cyst.

I was very very relieved and so was my family and parents, for 6 weeks the uncertainty of the seriousness in what caused the swelling, finally ended.
Nevertheless the infected cyst had to be removed, so the doctor transferred me to the main Hospital in Copenhagen to get the cyst surgically removed.