Friday, July 29, 2005

Day 70 - 13 days to go

Its late on Friday night and three weeks ago I started the worst night of my life. I have taken to having late afternoon sleeps waking mid evening. Friday was my eating day, I think at the moment we are up to one Weetabix, One Doughnut, One piece of chocolate and three spoonfuls of Frosties. Now that is 100% improvement on yesterday so tomorrow may get onto 2 Weetabix.

There are many things I detest about this treatment but the one I really dislike the most is opening the fridge or a cupboard and wretching. The smell of foods become over powering and although you feel like eating food, you know the minute it is cooked or opened you cannot eat it. You have no taste, or the metallic within your mouth takes over. Tonight was hard, I got up wanted something to eat but the mental thought of 3 weeks ago made me scared, even walking into the kitchen made me shake. My body trembled and I could feel my heartbeat rise, I opened a cupboard door and had to slam it shut and sit down. It is clear I need my cycling face masks I wear in London, I have one some where but wearing one in Starcross may be construed as some act of terrorism or S&M! My normal outlets like lucozades are out at the moment due to the acidic nature of most of the drinks which sting my throat.

It is all small steps at the moment, but I am not quite sure what I am going to do with my £15 off Tescos home shopping voucher before August 7th! Perhaps I could stockpile goodies until the 1st week in September, but then I suspect I would be paranoid about eating unhealthy and throw it all away.

I had a doctors appointment today, one to obtain more painkillers the other reason to sort out some paperwork. I always get emotional when seeing my Doctor, I think its a manthing, I know him personally and we have had many chats about running children and life. Simon Rains has the ability to show empathy but make sensible judgements. I wandered off again on a Friday night to the village Chemist and managed to lose my perscription enroute, re-tracing the route I found it in the post office as I had dropped it on the 200 metres journey and headed back to the pharmacy. I felt like crying, I felt worthless and useless and pretty much wanting to give up life again. These things may seem irrational to those readers who have not lived through cancer or experienced it little things get you down. Keeping your fragile existance going on a day to day basis, is it very difficult.

I need to be rational about myself, I have made huge strides over the last 5 months and through three major operations, 4 weeks of "oxymoron" treatments dropping a perscription can be so hard. When feeling down tonight I had an email from a very good friend of mine who has unfortunatley the experience of cancer:

Now here the for god sake bit:- you know youve been told you have cancer, you have a major operation, radio therapy, chemotherapy its still going on now, anything in your body good or bad has completely been killed, you spend alot of time feeling sick being sick, in pain morning noon and nite, you cant even look after your kids for long because you tired, cause you cant eat for the energy, you cant really go out because you dont have the energy and you are at risk of other peoples germs. of course you feel bloody useless, and downright shit on. probably even asking what on earth have you done wrong to warrant such a punishment. so no wonder your feeling down, thats what you feeling, depressed, and of course you will. I would recommend a little bit of cannibas, because you feel your letting everyone down. But the truth is your not, and soon your be bouncing back and we wont be able to keep up with you.

Roll on 13 days of "treatment" to go!


mazzagee said...

Depression!!!! Time to watch out for this little monster. It can creep up on you when you least expect it. Make sure you keep in touch with the doctor man for treatment or it will stay hidden and catch you out later on. Your diet leaves a lot to be desired understandably, but it might be worth forcing yourself to put in a bit more nutrition (can't spell) to help build up resistance to germs. Doughnuts, chocolate and a bit of cereal do not seem to be ideal. Ask for advice from your surgery or chemist. Am sure there are better foods for someone in your position. Then again you could be forgiven for taking the attitude that a little of what you fancy etc. etc.
Do not be too hard on yourself for feeling down, it is only to be expected. You're not the first and I doubt you will be the last to feel as you do.

Nigel said...

One of the things that you missed in my earlier posts was lectures about eating. Yes you are correct in a rational World I am not eating "healthily" but you have failed to understand there are several factors against this cisplatin, food smells and the horrid wretching that innocent smells such as digestive biscuits cause, open wounds in my throat that make eating like glass chewing, the inability to take in any sort of fruit because of the acid burns in my mouth and throat, no saliva.

So NO LECTURES I know what I should be doing and when I am able I will do it!

Nigel said...

Oh and by the way I have had a sackful of advice from professionals including dieticians, doctors and nurses. I have all the build up drinks in the World ready for when I am.

Anonymous said...

Found this on the net and thought you might get something out of it - the zinc idea seemed good.
March 3, 2003

Survival Story - Squamous Cell Carcinoma of the Neck - Male: Age 43
Barry Sebastian

My name is Barry Sebastian. In August of 1997, I was enjoying the company of close friends during summer vacation. It was wonderful. But, that was soon to change?

On August, 29. 1997 (my mother-in-law's birthday), I was diagnosed with squamous cell cancer of the neck, occult primary. The weight of the words "you have cancer" is hard to describe. I was in a fog. There was a whirlwind of panic going on in my head. Cancer?? CANCER!!?? Hold on thar Boba Louey. You must have this wrong. Someone in the lab screwed up (I worked in a lab for years, and I know mistakes can be made). No way. Not me. Not CANCER!

The thin needle biopsy was about 95% accurate, so it was time to make a plan. My wonderful wife and I sat with the surgeon and discussed my options. Of course one option is to do nothing. Should I elect to take that route, I'd have maybe 9-12 months to live. No thanks. My other options were surgery, radiation or a combination of the two. At that time, chemo was not viewed as a treatment that would do enough good to offset the discomfort it would result in (since then, however, studies have shown that concurrent use of chemo and radiation result in a positive synergistic effect). I wanted whatever treatment would give me the best shot at being around for a while. There was too much left to do! I have a wife and three daughters that need me, for God's sake.

[I want to say right here that one of the hardest things I had to do after getting this diagnosis was to tell my family about it. Our family is very close, and my grandmother and father both died of cancer (breast and colon). So, it is very easy to let one's imagination run away with another cancer diagnosis in the family. I began sending out weekly email updates to quite a long list of people. This was far easier than sending them individually, everyone got the same information, and everyone appreciated hearing the news as time passed.]

The official staging for my diagnosis was T-/N2a/M0. The occult status of my diagnosis (the T- part) meant that the primary tumor location was unknown. My doctor explained that this is actually the best scenario, since it would indicate that the primary tumor is so small that the recommended radiation treatments that would follow surgery would very likely destroy it. The metastatic tumor was 3+ cm (thus the N2a). The plan was to go into the hospital for an exploratory panendoscopy to try and find the primary tumor. If nothing were found, I would have a radical neck dissection (which didn't sound like fun after reading the description of the procedure), followed by a course of radiation treatments to the head and neck area to destroy any remaining cancer cells. If by chance the primary was found, I would be awakened and we would discuss the next course of action.

On September 5, 1997, after surgery, I was surprised to wake up and find I still had my neck! It was just a big mistake after all! Hooray! Not so... My primary tumor was discovered during the panendoscopy. It turned out that my left tonsil was where all this started. My surgeon removed the offending tonsil and some of the surrounding tissue. This tissue was to be biopsied to further verify my diagnosis. Talk about a sore throat! Mind you, I had never been in the hospital before, and wasn't caring much for my first experience with it!

We again discussed a plan of action. My particular type of squamous cell cancer was determined to be nonkeratinizing. My doctor characterized this as being a softer type of tumor, which would be more responsive to the radiation treatments. So, I would begin radiation treatments to hopefully shrink my metastatic neck tumor to nothing. And possibly not even need the radical neck dissection! Yeah - now we're talking.

Prior to starting the actual radiation therapy, I had to be simulated to establish the exact radiation fields. A clear plastic mask, molded to the shape of my head, was made that would bolt my head down to the bench I would lie on while getting the RT. My radiation treatments were to last 5-6 weeks. After 5 weeks I was to meet with my surgeon and radiation oncologist to assess the efficacy of the RT.

Once I began studying up on the side effects of the radiation, I thought to myself, "this is not going to be good!" I came every day with a pen and pad of paper. I must have driven my radiation oncologist, nurses and technicians crazy! But, I felt very informed as a result.

The main issues I faced were:
Loss of saliva (xerostomia)
Loss of taste
Limited opening of the mouth (trismus)
Burning of the skin (inside the mouth and outside on my neck) from the radiation
Oral thrush (yeast infection on tongue and inner cheeks)
Loss of beard in the radiation field (permanent)
L'Hermittes Syndrome (after radiation)
On October 22, 1997, during my fifth week of radiation treatments, we scheduled a meeting with my surgeon and radiation oncologist. The tumor in my neck had shrunk from a 3+ cm node, down to the size of a pea. My radiation oncologist was happy about this (another success with radiation!), but my surgeon was more cautious (ah, the knife is the only way!). Both felt the small pea sized mass could very likely be just scar tissue and dead tumor cells (hope, hope). BUT. We don't want to take any chances with this cancer. Indeed, not.

Time for a new plan... The radiation would continue until 28 treatments had been completed, and then a ten-day boost would be given to target the primary (left tonsil) site. THEN, I would have the radical neck dissection, two days after the 38th treatment.

On November 12, 1997, after a total of 38 radiation treatments, administering a lifetime supply of 7040 cGy of radiation, I was finally finished! Oh what a feeling that last day was! I was in sad shape, with burning in my throat, trismus settling into my jaw joints preventing me from opening my mouth, dry mouth and just being tired. But, I was thrilled about reaching this last day! It was a psychological victory. I knew that the radiation would continue to do its job for another couple of weeks, but at least I wouldn't have to don the mask again!

Fried and weary, two days later I went into the hospital again, this time knowing I would have the radical neck dissection. Coming off the radiation treatments and going into surgery like this seemed kind of nuts. The more common order is surgery, followed by radiation. I went through the usual pre-op shenanigans, and was given the IV, which would take me to never-never land and a six hour surgery.

When I woke up I was numb on the left side of my neck and face. Very disconcerting. The side effects that we discussed for this surgery were limited movement of my left arm/shoulder due to the removal of the sternocleidomastoid muscle (neck muscle) and spinal accessory nerve (this allowed access to all the lymph nodes that may be hiding cancer cells). There will also likely be numbness of the shoulder and upper chest areas. Well, I fit these perfectly. I also had a real muted sense of hearing. Like having a pillow around my head or something.

I spent two days in the hospital and tried to immediately start raising my left arm as high as I could (until it hurt). I would walk my fingers up the wall as far as they would go. I think this helped me to get movement back as quickly as possible. I will never have complete free movement of my left arm, but I rarely have a complaint about it. The incision looked less nasty than I imagined. My surgeon did a good job on it. Thirty staples, and that was it. I thought it would most likely hurt when the staples came out, but a week later when he removed them, it was nothing at all. I am sure the minimal pain was due to the lack of feeling in my neck!

I spent many months getting my strength and weight back. I lost about 27 pounds during the entire ordeal of radiation and surgery. My taste was completely gone for most of the radiation treatments and for a couple of months after surgery. Believe me, when you can't taste ANYthing, the eating process is severely compromised! My taste began coming back at about 6-8 weeks post radiation (in my opinion, thanks to the zinc supplements that I took). To this day, I haven't completely gained all the weight back - but I don't really need that last 5 pounds!

With this type of cancer, the doctor will tell the patient that if he or she makes it to two years, he or she is out of the woods. I am very fortunate to say I passed the five-year mark in August of 2002.

I attribute my success to:
The prayers of my family and friends
A positive attitude
Research and pestering my medical team to no end with questions
Great people I met on the internet
The many people in my support system, including the Wellness Community-which I highly recommend for those going through this!
And of course, God's will!
Life is indeed precious. Being human, we tend to take it for granted. But, an experience like cancer can sure put a different spin on things. I vowed to do something to give back, so I have been involved in developing a couple of web sites for oral, head and neck cancer. If you are interested, I have an in depth documentation of what I went through on my web site, at I tell my story in four chapters, and provide links and photos of the equipment I used during RT. My goal for the site is to provide a resource for newly diagnosed patients of oral, head and neck cancer, telling how it FELT to have to go through this. I am also the web master of the SPOHNC (Support for People with Oral and Head and Neck Cancer ) web site, a non profit organization dedicated to helping patients and families going through this. Also, a good online support resource is the ACOR listserv at

Barry Sebastian
Cincinnati, Ohio

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