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Head and Neck Cancer Radiotherapy

Pauline's Diary - Page 3
Head & Neck Cancer Radiotherapy
The First Week

By Pauline Weston Thomas

 

Pauline's Diary - Page 3
Head & Neck Cancer Radiotherapy - The First Week of Treatment

On this Head and Neck Cancer Diary page 3 you will find:-

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The First Day of Radiotherapy - Monday Sept 2 2002

I started to write this section as a diary, but fatigue soon took over and so after a week two it's written in retrospect from hand notes I made.

Today was my first session of actual radiotherapy to treat my occult primary head and neck cancer (SCC). It's now 22.30 on a Monday night and I feel kind of spaced out, even though I don't know really know what feeling spaced out is like. Zombied and zonked is how I'd describe  it. A permanent feeling as if a fire alarm has gone off at 3.a.m. in a hotel and you just want to crawl back to bed.

I don't feel myself. In fact I feel very peculiar, slightly disorientated and I feel so fragile almost frail. I think this may be due to an overwhelming sense of nausea, yet I doubt if I could be sick. It feels a bit like any motion or sea sickness and the thought of going in the car for the second treatment tomorrow is grim.

I never expected the metallic taste to occur on the first day. It goes with me everywhere. Food that normally tastes good is already flat and vile.

Feeling Cooked - Tuesday Sept 3 2002

In the early hours of the morning I woke up and realised that the strange feeling I had earlier yesterday and still with me was that the cheeks of my face felt as if they were being "cooked"!

Got up dreading going for the midday radiotherapy session still feeling slightly disorientated and nauseous, but gave myself a talking to and decided that if I felt this bad this early in the treatment, the cancer cells must be feeling even worse. Wondering if most people feel like this the first day or so and then get used to it. Also decided to take it one day at a time rather than contemplating six weeks of this. Feel very thirsty and throat is drying out quickly.

Special Soaps During Radiotherapy

It seems from what the radiotherapist said I need to get some Johnson's baby soap or Simple soap to wash my face with, rather than using cleansing products or just use water. I've tried to be really organised beforehand getting in a juicer and whey protein for emergency nourishing food etc, but this simple information would have been more useful before. One reason for writing this diary is that I've found so little "female" oriented information on the treatment I'm having.

Hmmm normally use make up cleansing wipes or Decleor or Elizabeth Arden cleansing lotion and sometimes wash with Dove cleansing bar for that scrubbed feel without dryness, but as make up foundation is out now, it's no problem to use just the baby soap once in the morning to wake me up.

Mouthwash & Use of Aqueous Cream

They gave me Chlorohexidene Gluconate as a mouthwash to use 4 times daily and also gave me Aqueous cream to use liberally on the irradiated area of skin.

Applied the Aqueous cream lotion they gave me to my face, neck and as far as my cleavage, the area now hinting at redness, not forgetting the back of my neck which is also getting treatment. The consultant who is wonderful, said not to use other creams without checking with her as they might contain metals. I feel she understands my vanity fears because she is a woman. She's been really kind and patient with my questions particularly about hair loss. She reckons it will occur in the radiation field at the nape back head parallel from under cheekbones/mid ear down. We'll see. 

Washing Your Hair During Radiotherapy - Avoid Products with Metals

It seems that metals can interfere with the radiotherapy and cause more severe irritation, hence the use of Johnson's baby shampoo instruction. For what it's worth some internet cancer sites suggest you can only wash your hair once a week. I checked with my oncologist and she said as long as I used the baby shampoo and avoided excessive skin wetting I could wash my hair daily as I always do. Frankly having spanking clean hair does so much for your morale, that to limit people to once a week is ludicrous in my opinion when it's the pH balance of the shampoo and metallic content that's all important, rather than the frequency of washing.

The same problem with metals of course applies to make up. She has said I can wear lipstick and mascara when not having treatment. Later the radiotherapists said I could wear lipstick and eye make up during treatment as my lips and eyes were not in the field of treatment. Someone I email who had radiotherapy to her breast said that using deodorant caused reddening under the arms as there was an element of "splash" in her treatment area. Deodorants of course often contain metal salts such as aluminium. It's not a problem in my case, but obviously splash does occur as yesterday they checked the amount of radiation splashing to my eyes, and today said it was satisfactory.

Yikes! This is serious stuff.

Drinking Lots of Water During Radiotherapy

When I mentioned the sickness to her she said I should be drinking 5 to 6 pints of water daily. Which means I need to start drinking it early in the day. Again circumstances were such yesterday on the first day of actual therapy that we spent 5 hours out of the house without refreshment what with getting to and from the hospital, a 50 minute re check in the mould room on my face shell and even further checks before the first treatment, along with a repeat of hearing information that would I feel have been more memorable in a leaflet.

We've learnt a lesson, keep plenty of water and drinks readily available. When you have an appointment and think you'll be called any moment, but there is a delay, you kick yourself for not going to get food when a 45 minute wait has passed by.

The head shell had to be refitted before the treatment yesterday and today as apparently I had "relaxed" (who are they kidding) and new measurements were required. From their comments I believe they work to the nearest half millimetre. It all seems very technical and as precise as they can get it. I really believe they are doing their best to help me. Yesterday I realised 8 people dealt with me as a patient and it occurred to me would there be all this investment in treatment without some justification for success.

Pondering on How NOT Why We Get Cancer - Wednesday 4th Sept 2002

Desperately want my facial skin to be ok as I've always had very good facial skin and people still comment on how clear it is. The picture in the header was taken on my 54th birthday 9 days after the neck operation in July 2002. Over the years I have spent plenty of money pampering it, but feel it has been worth it. Wish I'd had shares in Elizabeth Arden and Estee Lauder years ago. I ask myself is the average vanity I've shown some kind of punishment to be landed with a possible facial cancer, but know it's just bad luck and living in a polluted environment that is now less than perfect for everyone in society.

And hey what about the effects of Chernobyl the weekend of April 26 in 1986? Is my cancer a late effect of it in UK? Where was I that weekend? How could anyone forget where they were. I was in both South Wales UK and Stoke on Trent in Staffordshire. Heavy rain fell in both places. Can't help wondering what the fallout was that weekend. Just looked it up in  Google.com - oh dear the main cloud fell over Wales...

Food Tastes Awful When you Have Radiation to Your Head, Neck and Throat

I made fresh carrot juice with red pepper and celery and as the juicer was out felt compelled to juice 3 apples at the same time. Washing the juicer is straightforward, and really only takes a few minutes, but it's still a pain. However if my desire to eat after treatment is as affected as it was yesterday I think getting "any food, of any type" I can stomach first thing could be the answer. All my great plans for healthy nutrition are flying out of the window in the face of lack of appetite. Now I see why all the nutrition advice seems superficial and frankly bad when you read any cancer help pages. The healthy diet seems the only option in principle, but when it comes to the crunch, any food, some food is better than no food.

The fact is I don't fancy much in the way of foods. Foods I had mentally planned to eat from a nutrition point of view either already taste like cardboard, or of nothing, or totally different to usual or slightly metallic. Sweet food tastes over sweetened and salted foods have no salty taste. I never expected the effect to be so rapid - maybe after a week or two yes, but not after 2 treatments. I can see what the problem is - lack of saliva already. Faster than I expected. I knew, but never seriously thought before how important saliva is to make food palatable. Until it actually happens you have no idea how vital a bit of spit is to chew your way through just about everything. Also I keep wondering if no ptyalin is being released how does the food in my stomach get digested properly. To get through a meal you need water or a drink.

We travelled to the Oncology unit in Cheltenham and I found sucking just one mint Tic Tac made a huge difference to my nausea. I've read about people holding ginger in their mouth during treatment, but for me it's not an option as the head and neck clear Perspex style shell is firmly fixed (bolted) to the treatment table along with me under it and choking could be an issue. Kept sipping from the water bottle as my mouth seemed tacky. Saliva has begun to thicken up and my glands feel puffy.

Still the staff at the Oncology centre are marvellous, so kind, so patient, so caring to get the measurements perfect to the half millimetre. It's not a job I fancy I must say. I know from the patience showed to me in the various treatment rooms that the radiotherapists are doing highly skilled measuring every minute you are with them. Waiting around is more of an ordeal for any partner who goes with you. Was advised to take soluble paracetamol for initial pain and they would upgrade the pain medication as pain increased.

Food which has always been one of my greatest pleasures is suddenly a pleasure no more. I know part of the problem is that I no longer want to prepare it as I have no appetite.

So we popped into Marks and Spencer and I found myself buying several small ready meals of "comfort" foods like cottage pie, spaghetti carbonara, corned beef rissoles and a few other soft junk foods and bread and butter pudding - the sort of foods I usually turn my nose up at, unless a gourmet version. I really enjoyed that cottage pie. I got through eating it by talking to my sister on the phone whilst trying to ignore how yucky it was. It was only a teeny portion and it tasted like glue, but I was so pleased I ate it all. I'm sure it usually tastes fine, but I realise that after 1 tablespoon of food you need a fresh food as the taste rapidly palls.

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Cancer Treatment is All Consuming

Thursday 5th Sept 2002

Realised this morning that drinking the water is the possible key to controlling the nausea. I definitely felt better on Wednesday than on Monday and Tuesday. Maybe it takes a few days to get used to it. Am having a 2 hour nap everyday. Tiredness seems to set in about 3 hours after treatment. How do people carry on working. There is no way I could work during this. Concentrating on getting through the day from a nutrition point of view and having the treatment and cleaning and rinsing the mouth six times a day and resting just eats it up, apart from feeling unsociable.

We went for a 9 o'clock appointment today, because I had to be at my local Worcestershire hospital for midday for a mammogram that the consultant radiotherapy doctor wanted just in case it was one overlooked scan. My last mammogram was in December 2000, this machine was different than that at the mobile unit and whereas the 2 previous mammograms I'd had were comfortable this was a new machine and it was different and frankly, really painful. Now I know why some women have complained they find mammograms painful. Different types of machine, different pain.

Having cancer is time consuming. Hours are spent waiting in hospitals and in traffic jams and thinking I must drink water to help detoxify, I must eat, I must clean out my mouth and floss it, I must just check this idea out in Google.....

Rapid Weight Loss With Radiotherapy

My husband is concerned about the nutrition so they've booked me in for a dietician appointment next Tuesday. They weighed me today. I've lost about 14 pounds since mid June and no I'm not going to publicly write what I weigh here. A woman's weight is a personal thing - very personal <g>. That should give you a clue that I'm about 40 pounds overweight. It would be great to lose it, but I'm being reminded every day "you must not lose weight". Nutrition is needed to fight the cancer cells and rebuild those good cells damaged by the radiation. I never thought I'd have to force feed myself. I can tell you this is a big insult to me as I have always been something of a gourmet. I've always so far thought in terms of live to eat not eat to live!

Strange day. Whilst waiting in the Oncology unit I actually felt cheered when I opened the newspaper and read of two famous people having cancer. Both found lumps in their necks and I suppose it made me realise that fame, money, wealth mean nothing in the end as they will probably need to have a very similar treatment to me. Further on the paper highlighted the story of another well known person doing her best to live despite there being a rather previous report of her death when she is alive although unwell. Yes knowing more are in the same boat as me is heart warming.

Yesterday and today had several great letters from people congratulating me on my website www.fashion-era.com . It always makes it all seem worthwhile. I really want to change the colour scheme and add lots of ideas I have, but now is not the right time. This diary, although out of place in the scheme of fashion-era will be the next upload.

My Cancer Mantra

Friday 6th Sept 2002

Went for the radiotherapy. After, when I applied my aqueous cream to the slowly reddening skin I noticed a faint paler stripe of skin down the centre of my throat and this is parallel to my spinal cord. I notice when they set the machine to irradiate that area they spend ages angling two lead blocks to prevent rays passing through in particular areas. One block is placed centrally and falls over the centre of my throat protecting my spinal cord and another one on my right face side protects my lymph glands on the right. But the other half of the face has no lead block protection and matches the side with the lump which is getting the treatment. It really is all very precise. I do ask about 2 questions everyday, but it takes a while to absorb the routine of it.

I've developed a way of coping with the actual bursts of radiotherapy. I have a radiotherapy mantra that I worked out for myself.

Cancer Mantra

My cancer mantra is important to me.

I wanted to make it memorable so during the radiation treatment bursts and any other time I'm getting bored with all the fitting I say to myself in a Dr.Who Dalek staccato style voice, "The cancer cells are being eliminated. Eradicate, I say eradicate the cancer cells. Eliminate, eliminate the cancer cells. All cancer cells are being eliminated. I repeat eliminate the cancer cells. Eradicate, eradicate, eradicate until all cancer cells are gone, all cancer cells must be eliminated". I repeat a form of this whilst visualizing a Dalek style shotgun black cloudburst in cartoon style completely obliterating the lump that was there until it is a black hole.

Sometimes I say a little prayer and thank God for carrying me through dark moments and giving me the strength not to feel claustrophobic and panicky in the shell which I do feel quite often. Repeating phrases like " calm, calm, calm, calm " help a great deal. I often feel panicky in the mask and realise that this whole thing is based on trust that they will come back to release me. The fact that there are always two or even 3 radiotherapists treating you helps a great deal. My mind tells me at least one of them ought to remember to come back to get me out. This sounds daft to someone not experiencing it, but believe me when you are bolted down feeling the bolt withdrawn is accompanied by a huge sense of liberation.

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What Actually Happens in the Radiation Treatment Room

Bolted to the radiotherapy table in the clear radiotherapy mask. Some masks are made of mesh.When the radiotherapists have bolted me and the shell mask to the bed they spend a lot of time aligning a green laser beam to marks drawn on my mask and to a small pinhead dot tattoo they put between my breast cleavage. I hate this spot because to me it looks like a blackhead and I wish they had used a red pen so it looked more natural. They measure with special rulers to the half millimetre, checking measurements they have on a Computer screen monitor both in the room with you and outside the treatment room at their workstations. The measurements were done firstly in the planning stages in the simulator room.

First the huge Linear Accelerator machine rotates to the left side face basically directed at my cheeks, but in reality to the depth of the pharynx and when all is set, and that can take some five minutes or more, they leave the room and press a buzzer. The lead door slams! Warning lights come on everywhere. Outside they have a monitor of the treatment room focused on the treatment bed embedded flat in their work surface so your privacy is protected. Only the radiotherapist stood over it can see you in the room. Then they set the treatment buzzer on the computer and the computer records the dosage as the X ray treatment begins.

You have to keep perfectly still when they measure you and when waiting for the radiation beam. About a minute or two later after they leave the room the treatment area receives the radiation as they coordinate their computer outside. The noise is loud and sounds like a deep, but resonating high frequency. I hardly breathe when this happens and think only of my Dalek like cancer mantra. They say you don't feel anything. Personally I think that on some occasions I've felt an awareness that something was happening, particularly on day one when there was a sensation of vibrating penetration. But they are right it does not hurt during treatment, although there are post therapy feelings that affect you after.

They come back and that's the moment to wriggle if vital, believe me your foot, nose or lip or eye always need a scratch just as they leave the room! Then they measure again and do the right side and set the buzzer again and disappear. That noise starts and when the treatment happens it's probably no more than 30 seconds.

I get 2 Gy daily which I believe is the standard maximum for curative treatment, whereas for palliative treatment for pain relief they give up to 4 Gy, but in the latter case they are not concerned about long term after effects only pain relief for a patient, hence the lesser dosage for curative treatment. (Gy is pronounced gray)

For a third time they come back, arrange the machine so it's over my head and arrange those protective lead blocks. My frontal neck position to my cleavage line gets treated. Finally they return and measure again for a fourth time and then swing the machine around and under the treatment bed so it does my back neck. Sometimes they take some 4 second  X ray pictures to check the positioning for the consultant to peruse, so that all adds to the treatment time. In all my husband says it takes about 20 minutes before I emerge.

Radiotherapy Masks on Display in the Linear Accelerator Room

Radiotherapy Masks on Display in the Linear Accelerator RoomIn the radiotherapy treatment room there are several shelves lined with all the Perspex clear masks of people who are also having treatment in a similar time span to me.

Head and neck cancer radiotherapy masks can also be made from a diamond shape mesh like material.  Both methods are used. Sections from the clear Perspex can be drilled away from the mask and this is useful for mixed radiation treatment types such as targeted extra electron treatment

Each persons mask is slightly different as their radiation plan is personalized and tailored to their known cancer positions. The theory is that the cancer is precisely targeted according to each persons X-rays, scans and facial measurements, so only bad cells are killed by the radiotherapy rather than good cells being destroyed. 

Food Problems

Still finding food a problem. I should know better about nutrition and having worked in a Home Economics department for many years I do. But this is what I've eaten today. I enjoyed very little of it, but at least managed to get it down. Breakfast was a small portion of potato gratin from Marks, followed by half a banana my husband had left for me. How sweet of him. I doubt if I'd have peeled new one just for me right now!

After the treatment at about 3 pm I had a small trifle from Marks and 2 tablespoons of spaghetti carbonara. I think the trifle almost tasted normal, but again slightly gluey after about half of it. I left all the bacon in the spaghetti. Meat has no attraction. It has a cardboard quality. Chicken breast is the worst with a pure kitchen roll texture.

Later I had a Marks ready meal of potato topped mixed vegetables in white sauce followed by a bowl of fresh raspberries with vanilla ice cream - excellent. I'm getting to know what is palatable and what is not. Water biscuits and cheese are a big no no with the saliva problem. The only food failure today was when I made a crab sandwich. I had to run to the lavatory to spit out the only mouthful I'd had. (Looking back on these weeks I feel now how well I ate initially.)

Am amazed that carbohydrate is the only food that tastes good. The thing is I ate food and that's what matters. They hint that about day 14 the throat will be raw and burnt so need to eat now whilst I can despite the taste factor.

One week (well 5 days) of therapy over. Hurrah!

Just noticing a strange burning sensation on the tip of my tongue.....feels like I've had hot chillies... tingling, burning tongue tip....no amount of fluid or water can quench this thirst of feeling on fire.

The Weekends Are Free of Radiotherapy

Saturday 7th Sept 2002

Got up and throat very dry. Managed cornflakes in creamy milk for breakfast. Had to let them soak for 5 minutes, but they tasted almost normal.

Going into Worcester in a short while to see Jenny the Chinese doctor at the Imperial Herbary in the Hopmarket.

Have washed my hair in my usual shampoo and my it looks so much better than with the baby shampoo which leaves the hair in my opinion limp and lank - yes just like limp baby hair. I put Max Factor Lipfinity lipstick on my mouth - so that will last all day, shaped and contoured my eyebrows and used mascara. I feel any residue will be cleaned off by Monday and I can use the aqueous cream they gave me as a cleansing product. What a relief not to have to go today. I feel human again and almost normal apart from the mouth taste and burning tongue tip. The make up makes me feel as if I have my life back, even if only for the weekend. The rigor of the daily visit is demanding mentally.

Went to see the Chinese doctor again.

She was really helpful and sympathetic about the appetite, dry mouth, poor saliva production and metallic taste problem. She said my tongue was burnt on the tip, confirming my suspicions last night, but much less greasy than her diagnosis last week. She agreed that eating any food was better than no food so was adjusting the prescription to contain a herb that would stimulate appetite. As a lifelong weight watcher I find this hysterically amusing, never ever having needed my appetite stimulating before. I was always ready for more gourmet food before. She also added 2 herbs to increase saliva production and another to help with the burning in my mouth.

She adjusted the prescription to begin on Monday to now include Codonopsis root, Lilyturf Root, Snake Gourd Root and Hawthorn Berry whilst keeping the original base of Astragalus Root, Skullcap Root, Gardenia Fruit, Self-heal, Tuckahoe, White Atractylodes and Oldenlandia. Being me I have of course looked everything up on the internet and am amazed at her understanding of my situation. She prescribes herbs that are ideal I would say for the condition. Hmmmm noticed that sometimes now I call this my condition as calling it my cancer is hard when it is supposedly microscopic and no one knows where it is other than somewhere in the region of my face and neck.

I was really pleased when she said I could brew it every 2 days. Brewing it daily is demanding on top of everything else.

When we came home I did some more simple cooking preparing a few soft foods for tomorrow, which included cabbage and mashed potato into which I added some cream. Tomorrow I'm going to have bubble and squeak, but meat holds no desire. They are hardly the foods of foodies, but they are what I can probably stomach at this time. One thing that generally tastes good is fruit. I think it must be the sweetness and softness element. I'll not try a dry water biscuit again in a hurry.

I've been rubbing the aqueous cream in about 4 times a day and she thought the redness was not too bad which pleased me. Have also used it tonight to cleanse off the mascara and Lipfinity, which wonderful as it is, is still on!

It's been a great day compared to last Monday. No nausea and I've managed to eat a few things. I'm not sure if it's because I don't need therapy for 2 days or I've got used to it. Jenny the Chinese doctor said I would feel much worse without the medicine. I know she has a vested interest, but my energy level today is almost higher than normal.

I spoke/wrote too soon - by week 2, once treatment started again, I found it far too difficult to sit daily at the PC so the remainder of this record will be written in retrospect.

Footnote :- The unit of radiation measurement is the Gray (Gy) Other units include the centiGray (cGy) and the rad. One cGy equals one rad. One hundred cGy equals one Gray and so, 60 Gy equals 6,000 cGy.  Although the term rad isn't used now, 6000cGy equals 6000 rad which is why people who have had radiotherapy refer to it as having had rads. The radiotherapy is delivered in fractions.  For example I had 30 days of treatment of 2Gy or 200cGy for 5 days a week which totalled over the six weeks (minus rest weekends) 6000cGy or simply 60Gy. 

Click here to go to the immediate weeks after radiotherapy, many photographs of the burns and taste recovery

Click here to go to weeks 2 to 6 of radiotherapy and initial photos of the burns and mask pictures.

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Head & Neck Cancer Diary & Radiotherapy After Effects

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