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Welcome

Welcome to my blog, I assume the reason you have found my blog, is either because

  • You are or have been a HPV tonsil cancer patient or
  • You know someone who has been affected.

I created this blog for use as a tool and source, to those who is affected by this particular cancer.

Be warned that my blog is descriptive and not very personal as the focus for me is giving you a knowledge of the treatment and my best advices for getting through it.

Furthermore,my blog its quite upright , – going through the treatment of HPV tonsil cancer is very tough, both physically and mentally and I do not hide it in my diary.

If you want to look at a more personalized blog i can heartily recommend the Jason Mendelsohn who has created the SupermanHPV homepage, which i found of good use during my treatment, furthermore Jason is a very friendly and helpful guy and will answer your questions.

If you have any questions, feel free to contact me at: info@hpvtonsilcancerblog.com

Me:

I am mid forties male living in Denmark, i am married and father to three children, who has never been seriously sick and despite some extra kilos, on a regular basis does fitness.

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Week 1 – Whats that lump on my neck?

Christmas was closing in, i still needed to buy a lot of presents and work is very busy, i sat at my two-screen desktop and suddenly wonders why my natural head position was a little to the right.

I felt it at my left side of the neck, – a painless but very noticeable swelling under my jaw. I did not feel sick at all, so what what was it? …

6 month check after treatment

6 months after treatment! – I feel better than ever, the side effects are now at a level where i hardly feel them.

I went today to the hospital for the 6 month check – as stated earlier, due to my good prognosis i do not need PET/CT scan and the check was only visual, where the doctor checked and felt at my throat from the outside and my good old friend, the camera down the throat, – it is not that unpleasant 🙂

The good besides there is no recurrence:

Dry mouth is now barely present and not noticeable during the day, only a little in the morning.

The taste-buds are also much better, the number of foods which do not taste like before is continuously narrowing down, not at the speed i want, but nevertheless progressing.

The affected area in the mouth still have a tendency to sometimes get a little irritated, especially after eating spicy food, but still a mass improvement compared to July 2019. I can drink liqueur and beer, wine is also doable but the taste is not nice to the acidic contents.

The energy is now fully back to the same level before and i do fitness, running and cycling if not even better than before due to loss of weight.

The weight is also slowly back on track, so i will keep an eye on it as i do not want to forfeit the only positive outcome of the cancer – the weightloss.

The bad or the status quo remains from the treatment.

Not much bad can be written, but some of the mental scars of the cancer chapter is still present and will probably at some scale be for the rest of the life. Irregular pain or normal sickness is still letting my mind to a degree wonder, whether all cancer has been removed.

Cancer is characterized by being able to create metastases, so even though that HPV cancer is very seldom creating distant metastases , it will at some degree, stay in my mind.

Mindfulness meditation courses has helped me a lot, in order to control and limit the degree of alarms my sensors are sending out.

I still feel different in the side of the throat which was the primary target of the radiation and sometimes i have tensions which strike from the former wound to the ear, but they are also less and less.

So everything is going very well, my mood is much better and my energy as well 🙂

3 months since treatment ended – and enjoying the summer vacation.

I just came back for a 14 days vacation in Albania, which was really nice. We traveled around the country and did a lot of hiking, besides bathing, watching pretty monuments and eating great food.

I was quite unsure how i would handle the vacation, would i be tired all the time?, would i be able to eat the local food?- but everything worked out much better than expected. While my physical condition in terms of running is still not very good, the hiking in Albania went without any problems despite heat and uneven surface.

My tastebuds are now very much back to almost normal, it is very difficult for me to identify whether the taste still has been reduced a little compared to before, but everything tastes almost as it should.

The challenge with dry food is also much better, even pizza with a lot of fill on goes down without any problems, but i still need water to support the swallowing.

Chocolate and dry bread is still not so pleasant, but compared to just one month ago, i do not sense in the same way that something is not right.

I tried wine, it is manageable , but the alcohol is burning the throat, which is not very pleasant, beer is much better.

I had a sore throat during the vacation, which is not nice feeling, when you recently had the throat ares blasted with radiation. All my sensors worked overtime and I worried a little whether it was getting back, but everything went within a few days back to normal.

My next check is in September, i will write a status , but everything is going very fine and i feel now like my life can return to normal.

5 week milestone medical examination – progress continues but on a smaller scale

  • Weeks after treatment            7
  • Pain                    None
  • Mood                 7/10
  • Energy               8/10
  • Side effects     2/10

Hi, things are still improving but on a smaller scale, non-moist food is still not possible for me to eat and the dry mouth is still very present, but in generel only annoying when i eat and in the morning.

My weight has been reduced a little further due to lack of appetite and smaller potions, but nothing alarming. 

I do a lot a more active things now, but my body and mind is then also punishing me for doing so, so i am still much more tired than before the cancer experience. 

I am also back at work, but on a reduced scale. I have a weekly day off and 2 days i work from my home still for full wage which will continue until august, so i am very grateful that my workplace have been so supportive.

In other words, my world has become quite normal again with me back to work, doing fitness and attending social/children activities. 

Mostly i do not think a lot about how much i have gone through, but at eating time or after physical activity i get a clear reminder that everything is still not as before cancer..

My ability of overview in planning has been reduced probably due to my tiredness, so if there is a lot of arrangements in the upcoming days it can seem un-manageable for me and i lose the overview.

But good news! – i  went to the 5 week examination at the Hospital, it went very fine, the wounds had healed fine and there was nothing unusual to see.

The doctors used camera in the throat and their fingers (with gloves on) to check the mouth and throat, it was not as unpleasant as it sounds and was very quick.

I told them that about my frustrations that the progress was less noticeable and they told me it was very normal and the dry mouth and taste buds will take time before they hopefully work almost normally again.

The next examination will first take place in 4 months and there is no need for any CT scan, my travel insurance has also cleared me for vacation this summer so on a technical level i am declared healthy!

Week 21 – Still noticeable progress

  • Weeks after treatment            6
  • Pain                    1/10
  • Mood                 8/10
  • Energy               8/10
  • Side effects     2/10

Again not much new to say, the taste buds are still getting better week after week and the dry mouth is still dry mouth. My energy is getting better and food is continually getting easier to eat and the choices are expanding. Even some types of meat can go down now, if followed with plenty of water.

I went to the dentist and there were no visible signs of radiation damage to the teeth, I am now using Colgate Duraphate toothpaste(only available per prescription) with 4 times flour in order to strengthen my teeth as they are more vulnerable without saliva in mouth.

My hair is growing slowly in the back of the head, the hair at my neck is still pretty dead.

My next update will be when i have my 5 week examination, where i will be examined to see whether everything is ok.

Week 20 – Everything keeps getting better

  • Weeks after treatment            5
  • Pain                    1/10
  • Mood                 8/10
  • Energy               7/10
  • Side effects     3/10

Not much new to say, the taste buds are getting better week after week, the dry mouth is still dry mouth, it is not totally dry, but in the morning i need a lot of water.

My food intake expands on a weekly basis and i have ditched the protein drinks, now i am able to eat soup, fried eggs, fish with sauce , yogurt etc.

It is still not very pleasant to eat, but it gets down.

Burger, pizza, sushi and anything spicy is far out of reach due to the dryness.

Week 19 – Still progress

Weeks after treatment            4

Pain                    1/10

Mood                 8/10

Energy               5/10

Side effects     3/10

Everything is getting better, the phlegm is gone, the swelling in the back of the neck and gums is reduced considerably. When the phlegm left the building, the dry mouth is replacing it, but it is indefinitely less annoying than the phlegm


The taste buds are primarily out of function but i can taste salt and spices (not any spicy).

I begin to do fitness and work again, my energy is still limited but now i feel that life has began again. I have gained a little weight but most of my clothes is still out of reach due to my reduced size 🙂

Week 18 – Breakthrough!

Weeks after treatment            3

  • Pain                    1/10
  • Mood                 8/10
  • Energy               4/10
  • Side effects     4/10

Finally i feel the things are in progress!, the NG tube came suddenly up by itself just before Easter in the end of the week, i am not going into details how… – but it seems my body felt healthy enough to reject the annoying foreign object in my throat. 

I then had the choice on going back to the hospital in order to get a new NG tube or try to drink the needed 6 daily protein through the natural way.

It worked!, the protein drinks are not enjoyable, but diluted with water they go down the throat without much problems. For the first time in a long time, i sleep well at night, within the next days, the phlegm is reduced considerably, the tube had probably also been a partner in crime in generating the phlegm.

It’s just great that whereas the side effects before had a crippling social effect, they are now just annoying, so it has been a big turning point 🙂

 

Week 17 – Second week after treatment

  • Weeks after treatment            2
  • Pain                    2/10
  • Mood                 4/10
  • Energy               3/10
  • Side effects     8/10

The pain is now on a level where i do not need morphine anymore, the doctors told me three times, that i needed to scale down on the morphine before i should stop using it. I did for reasons unknown to myself not listen and did a full stop…- the result was 4 sleepless nights, so do as the doctors tell you to!

The mood is again taking a dive, the pain in the neck and throat is reduced but the phlegm continues to be bothersome and the tube seems to irritate my throat even more. I am very sick of being sick, my possibilities for doing anything is severely restricted and it is very difficult to not know whether i will be hit with a lot of late effects.

I am in a very self-pity mode, my family went to visit relatives for a few days which was very good as i was not able enjoy their company and they can not do anything to alleviate the side effects.

I watched Deadpool 2 in order to get in a better mood and had a laugh when Deadpool goes into self-pity mode and gets this answer:

Week 16 – First week after treatment

  • Weeks after treatment            1
  • Pain                    6/10
  • Mood                 7/10
  • Energy               4/10
  • Side effects     9/10

The doctors told me that the 2 weeks after treatment could be the worst due to the cumulative effects of the radiation. This is not this case for me , it is not better than last week but not worse, perhaps i am a little more tired. The pain from the burns on the neck is noticeable but not that bad, probably due to the morphine. The phlegm is just as annoying as before.

I can do quite a little, go / ride a ride a day, but when time approaches 19 PM, ,my reverse edition of Dracula very quickly goes back into his coffin 🙂
I am reluctantly looking to see the first small cracks of improvement, hopefully they will arrive in the next week.