Main » July 2004
July 30, 2004
Jumping at shadows
I think that I am definitely still at the stage where every little bump and bruise is going to make me think that my cancer has come back.
I have a lump in the back of my throat that was there pre-treatment. It was not included in the field of radiation so if it is cancerous it will have to be treated later. The oncologist said that it could be cancerous but if it is not causing any problems I should not worry about it yet. I have also noticed over the last two weeks two patches on the skin on the outside of my left breast that look like bruises. They have not gone away again though.
One of the presentations of MALToma is on the skin as bruise like lesions. I am probably just jumping at shadows. I have another appointment on the 13th of October. Surely it won't kill me between now and then!!!!!
Posted by Possum at 03:23 AM | Comments (0)
July 24, 2004
Finally caught up
14th April 2004
I went back to Peter Mac today to get the results of the lymph node biopsies from my chest. It turns out that I am in the 8-10% of lymphoma patients that also suffer from a disease called Sarcoidosis. This is a better diagnosis than more lymphoma. I will have to read up on Sarcoidosis now.
I met the radiation oncology intern today. Her name is D.r Campbell and she is absolutely lovely. She explained a little to me about the side effects of the radiation that I will be having! So I am definitely having radiation and no chemo. I am pretty happy about that.
So now that treatment is decided on I have to go to the Royal Melbourne Hospital tomorrow to see the maxillo-facial surgeon about my wisdom teeth. More surgery.
15th April 2004
The Maxillo-facial Surgeon at the Royal Melbourne says that it may take two weeks to get onto a list to have my teeth removed. This is not too bad considering the wait for a normal patient is two years! He also informed me that there is a definite risk of loss of sensation in the lower half of my face as the two lower teeth are wrapped around the mandibular nerve. I kind of already knew this! When I arrived home tonight I got a phone call to tell me that I am on the list for the 20th of April. Crap!!
19th April 2004
I went to the Royal Melbourne today for my pre-admission clinic appointment. I only had to wait for two and a half hours to be seen, got poked and prodded and psyched for the operation tomorrow only to be told just before I left that the list had been cancelled due to industrial action.
21st April 2004
I went in to work today and sorted out time off and sick leave. They are really understanding.
23rd April 2004
I got a phone call from the Royal Melbourne today to confirm surgery for tomorrow. They also let me know that I may well be cancelled again due to ongoing industrial action by the nurses.
24th April 2004
What a pleasant experience that was. I suppose at least this time I did not have to wait all day. All four of my wisdom teeth are gone. I have some nerve damage and as a result can feel nothing from my bottom lip down. They say that this may be temporary. It is very odd not being able to feel your bottom lip or chin!!
25th April 2004
I am home again today. I have to say that today is not a good day. I am seriously considering refusing further treatment. It is definitely not a natural thing when you are feeling fine, to force your body to submit to procedures that are going to cause huge amounts of pain. I am not happy. I feel fine or just start to feel fine after the last procedure when all of a sudden I have to subject myself to another whole world of hurt. I do not like it. The lack of feeling is driving me mad and the pressure from the swelling is extremely uncomfortable.
28th April 2004
Follow up with the maxillo-facial guys today. They are happy with how things are healing. They feel that the sensation should slowly return to my lower face. It took three hours to get there for a five minute appointment and three hours home again. There goes another day. Back to Peter Mac on Friday
30th April 2004
My appointment today was at the molding room at Peter Mac. They were really nice people and made me feel at ease. I was a little concerned when they tried to draw on me with a special marking pencil, only they forgot to oil it first and nearly took the skin off my neck with it!!
They made a pillow to support my head out of this stuff that is like expanding foam which moulds to the shape of your head. After that they made a thing for my mouth called a bite block. It is a big hollow straw with this stuff that looks like grey playdough on it. They put it in your mouth and make you bite down on it until it sets. This will hopefully keep my tongue out of the field of radiation. After the bit block was made I had to have a mask made. This is able to be clamped to the table that you lie on and is used to keep your head perfectly still and in the same position every time you have radiation. To make this they have a sheet of hard plastic that is soaked in hot water to soften it up. Once it is soft they press it down over your face and mould it to all of the contours. When It cools down it sets hard again. Oh yeah there is a hole in it so that you can breath. Once this is completed they get you to put all of this stuff on and then have a CT scan just to make sure that they are zapping the right place.
I also met my primary care nurse today. Her name is Nicole. I also remembered to tell her about a lump under the other side of my tongue. She got me in to see the radiation onc who thought that it was probably nothing, and even if it was it would be in the field of radiation anyway. So now I wait until the 11th of May for my first treatment.
11th May 2004
I finally managed to find the place I am staying at in Melbourne. It is too far to travel from home every day for treatment so I will stay here during the week and go home on the weekends.
I had my first treatment and the guys on my unit are all fantastic. They put me right at ease. It was nowhere near as scary as I thought it would be and all over in about ten minutes. They tell me that this is the longest appointment. The others will all be about five minutes. I was expecting that the side effects would take a while to kick in but my spit is gone already!!!
12th May 2004
Second treatment today. I slept most of the day and went to my appointment at 4:20pm. They were faster today. It seems like a waste staying in Melbourne for ten minutes treatment a day. I think that my mouth feels tender already. It may be in my head though!
13th May 2004
Another treatment today. My primary care nurse made an appointment to see me today and then forgot and went off and did something else. That is the second time this week. Not Happy!
14th May 2004
Last treatment for the week today. I was to catch Nicole today before I went but she forgot again. What the hell use is a primary care nurse if you can't bloody see her!! I had a hissy fit and told them that perhaps I should have a different PCN. She rang me on the way home and apologized for missing me. Then she tells me that she is on holidays for the next three weeks. Great! Anyway enough of that. I went home early today because tomorrow is my mother's 50th birthday.
15th May 2004
All of my mums family is here for her birthday. This is the first time ever that my mum and her sisters and their mum and dad have all been in the same place at the same time. EVER. The best part of the day was when Mum and her boyfriend surprised everyone by getting married. I got to give her away!!!
17th May 2004
Back to Melbourne to start again today. Most of the family has started to dissipate after the weekend. Treatment went well. I slept most of the day. I only woke when my cousin rang from the airport to say that she had missed her flight!!! I was too tired to go and see her though.
18th May 2004
I had treatment this morning and then had to meet mum to pick up my little brother, his wife and two kids. They have not been getting on well and today was the day that it all blew up. Unfortunately it was in my car while we were driving around the city. I was tired an miserable and it was too much for me to hold my tongue so I let them both have it with both barrels. Needless to say that it made for a really pleasant day. Anyway I got them dropped at the airport and on their merry way.
I also got a call from Kev, my hubby. He is in hospital at home with severe gastro. The poor thing. Wish I was there to look after him.
19th May 2004
My mouth is definitely starting to get sore now. I had an appointment with radiation oncologist after treatment today and they tell me that if my mouth is not too sore at the end of next week they will continue to 30 treatments. Got lots of sleep today and feel much better for it. Kev is home again but still very sick.
20th May 2004
Treatment went well today. My friend Chas was supposed to be coming to visit today at 11:30am. She finally rang at 1:30pm to say that she hadn't left home yet. That is three hours away. So I won't see her today. She is going to come in tomorrow morning.
21st May 2004
Had treatment this afternoon and my mouth is really sore. Chas came in today but she bought her mother with her. It was really good to see them both but dang! They are high maintenance.
There seems to be some confusion as to whether I will continue to the full thirty treatments or not. I guess I will find out at the next oncology appointment. Home for the weekend now.
24th May 2004
Back to treatment this morning. My mouth is definitely sore and I now have two really rosey cheeks to go with it.
Chas rang and said that she will be in to pick me up in the morning but I told her that I wasn't up to it. I didn't want to hurt her feelings but I am too tired to entertain people.
25th May 2004
Got zapped again today. Nothing new. Got out an went for a walk by myself. It was very relaxing.
26th May 2004
I had an appointment with the radiation oncologist this morning and he tells me that today will be my last treatment. I was a little confused by this so I asked him why it was being cut short. Apparently my initial treatment was to be only to one side of my head but after the second lump that I found they decided to do both sides of my lower jaw at the same dose. This meant that I was getting double the dose that I would have been getting originally so they felt that I had done the full course of treatment. YAY!!! So I have my last zap at 12:10pm today and then I can go home.
27th May 2004
I had another checkup with the maxillo-facial surgeons at Royal Melbourne and they are very happy with how things have healed. I was left in the waiting room for over two and a half hours because they had crossed my name off as having been already seen. I was a little cranky.
9th June 2004
Back at Peter Mac today for a post treatment checkup. All is going well. There is an enlarged lymph node on my right lower jaw but this may just be from the treatment. I also have a suspect lump in the back of my throat. They are just going to watch this and see if it does anything.
10th June 2004
Appointment with dental oncology today to check on my mouth. They are happy with how well it is recovering from the radiation and feel that any side effects will only be temporary.
16th July
Had an appointment with radiation oncology today and now I have to say that I am really confused. I have not had one test at all since I finished treatment but the doctor came in and told me that I am in remission. I was happy to hear it at the time but now that I have had time to think about it I want to know how he knows. I guess I will just take his word for it. Anyway, My next appointment is not until the 13th of October.
I think I am going to feel a little lost not having to base my life around cancer anymore. What a strange thought!
Posted by Possum at 02:02 AM | Comments (0)
July 20, 2004
A bit more background
Sorry that this is taking so long to catch up guys but I am working full time and finding it hard to get back to it.
10th March 2004
I went back to Peter MacCallum Cancer centre today to get the results from the million tests I had last week. You should always suspect that there is going to be a "but" when the doctor lists off your tests and the results instead of just saying that everything is all clear! To give the short story all of the test results were clear except for one. The PET scan showed that there was a reasonable amount of takeup of the contrast in the lymph nodes in my chest. I was a little taken back by this but the oncologist seems to think that there is not a lot to worry about. I am to have them checked out by a cardio-thoracic surgeon as soon as they can fit me in. I have to have a procedure called a mediastinoscopy. What a mouthful!
Tomorrow I am to have a gastroscopy to check that there really are no tumors in my stomach and to double check on an earlier diagnosis of celiac disease. I also have to have a B12 injection as my levels are quite low.
11th March 2004
I had the gastroscopy today. From what they have already told me there was nothing to see that was of too much importance. I go home again now and back to work again on Sunday.
17th March 2004
I went back for the absolute results of the gastroscopy today. They say yes to celiac disease and that I also have esophagitis. No signs of lymphoma though which is a relief. I had two other appointments later in the day. They both turned out to be a waste of time as I had already received the information at the first appointment. I finally made it home at around 7:00pm to find a message on the answering machine telling me that I had an appointment back at Peter Mac at 9:15 in the morning for another PET scan. I really think that they have made a mistake but it is too late to ring them and verify now so I will just get up at 5:30am and head off to Melbourne again.
18th March 2004
I fasted again for the scan and even brought a person with me to drive me home. I went into the PET centre and guess what? They had made a mistake! I am sure that the receptionist thought I was going to deck her. I was so upset that I nearly cried. I finally got over it though and my friend and I went and had a nice breakfast in the city before the three hour drive home again.
25th March 2004
Today's appointment was with the cardio-thoracic surgeon. I have been booked in for a mediastinoscopy at St. Vincents Hospital in Melbourne on the 6th of April. Because it is so far from home I am to stay in overnight. The 7th of April is my birthday and my wedding anniversary.
I spent a lot of time on the net tonight reading up on NHL. Man it blows my mind.
5th April 2004
My hubby and I arrived in Melbourne today for an appointment with the hematology oncologists. They cancelled it about an hour before. Oh well now we can spend some quiet time together.
6th April 2004
I got up at 6:00am this morning so I could have some breakfast because I have to fast for the rest of the day. We arrived at the hospital at 11:30am and I checked in. Kev an I both thought that he would be able to wait with me but unfortunately not. Once I was checked in we had to say goodbye. I waited around all day for them to come and get me. I have to say that there is nothing quite like sitting around in a room full of complete strangers in nothing but your nickers and a hospital Johnny! I finally went into theatre at 7:00pm. I impressed everyone with my calm demeanor and eloquent use of the English language, NOT! So after I had sworn at the surgeon and been knocked out I woke up feeling like I had been hit by a truck.
7th April 2004
Happy birthday to me and happy anniversary to us hey? I could not seem to wake up today. The anesthetic really did a number on me. Kev and I finally got set free around lunch time. Before I went they told me that I had to go to the toilet. I told them I would go if they unhooked me from the IV. They nurse that took the IV out didn't apply pressure to the puncture so when I was organizing my things for a shower I looked down to see bright red blood going everywhere and lots of it. I have to say that my heart did skip a beat until I worked out what was wrong. Anyway, after all of that they told me that they had found no tumors but that there was definitely something with the lymph nodes so they had taken a couple for testing. I now also have a five centimeter incision at the base of my throat. Very attractive!
Posted by Possum at 04:54 AM | Comments (0)
July 15, 2004
More background
9th February 2004
I've fasted since 7:00pm last night and it is now admitting time. 10:30 am. I hope that this doesn't take too long!
10th February 2004
Yow!!!
All things considered though I don't really feel too bad. I finally got into surgery at 2:30 pm They tell me that everything went well. I woke up in recovery feeling absolutely terrible. I get extremely nauseous from anaesthetics. I was nowhere near as sick as the woman who was in the bed opposite though. She was trying to talk to whoever was on the phone while she was restacking the contents of her stomach into a kidney dish!
They tell me that I am going home in little while. I have some numbness in the end of my tongue and inside of my gums but no here near as much pain as I thought I was going to have. I have an appointment on Friday with the ENT to get the results.
13th February 2004
I should have known that an appointment on Friday the 13th could not bring good news. I took Kev to the appointment with me and we waited for over two hours to see the specialist. When we finally got in to see him he was very nice. The first words out of his mouth were, " Up until Wednesday afternoon we were calling your lump a benign growth, but a second opinion from Dorovitch pathology has changed the diagnosis to Extra Nodal Marginal Zone B-Cell Lymphoma of the Malt type." What a mouthful hey?
Well I guess this means that I will be winning lotto tomorrow night. I bought a ticket with the agreement that a good diagnosis meant that I would not win the lotto and a bad one meant that I would win.
The ENT tells me that MALToma has an extremely good outlook and that if I was going to get cancer then this is the one that I would want to get. (I wonder if he would say that if it was him sitting here?) I didn't really take much in after that. I have been referred to the Peter McCallum Cancer Center in Melbourne. They will ring me with an initial consult appointment time.
14th February 2004
I did not win the lotto!
18th February
I have been sent to Ballarat again to have a CT scan just to make sure that there is nothing else going on.
23rd February 2004
I had my initial consult with the hematology oncologist today. His name is John Seymour, a really really nice person. I had my first round of appointments organized. I also saw the hospital social worker to help organize accommodation for me.
2nd March 2004
Today was the first of my appointments. Very interesting. My first test was an absolutely wonderful experience called a barium swallow and bowel x-ray. They told me that everyone who has this test gets constipated. Not me. They had to keep giving me more of the horrible stuff to drink because I could not keep it in. If you have never experienced one of these tests it is impossible for me to explain how truly repulsive this stuff is.
My second appointment was with dental oncology. I have to see them to find out if I need to have any dental work done before they start treatment. They took an x-ray of my mouth and told me what lovely teeth I have and that I have the worst impacted wisdom teeth they have ever seen. They also told me that if I have to have radiation to the head and I will have to have them out.
From Dental Oncology I went to see the Head & Neck surgeons. The young guy there has a feel of my neck and a look down my throat. He says that he can see a small bump at the root of where one of my tonsils used to be and that he would like to take a biopsy of it. So off he goes and gets a nice long set of biopsy forceps to take a little nibble. I had the back of my throat liberally sprayed with lignocaine and then he proceeds to try and take a sample. The biopsy forceps must have been blunter than a couple of bricks because he nearly had to put his foot on my chest to get enough leverage to get the damned thing out! The nice young man had two tries and was coming back for his third when he got the same message as the man who did the FNA at the ultrasound in Ballarat.
3rd March 2004
Today was the day for the dreaded Bone Marrow Biopsy. It was nowhere near as bad as I had thought it was going to be. I had to have about a million blood tests before the BMB but unfortunately as this was the second day that I have had to fast my veins have all shriveled to nothing. After the fourth try I suggested that they wait until I was sedated and then have a try. So off I went to have the BMB. They gave me this wonderful drug called medazolem. I loved everyone after that. I don't remember much of the procedure just a deep dull ache in my hip for about a minute. I do remember telling the doctor that seeing as how he had had his hands all over my bum then perhaps he should take me out to tea and get to know me better. They did eventually do the bloods while I was zoned out.
Later I also had an appointment with the upper Gastro Intestinal surgeons. Because MALToma can also be found in the gastric tract they need to have a look there so I have been scheduled for a gastroscopy and a helicobacter pylori test. ( In gastric MALT it is always caused by the h-pylori bacteria and can be cured by curing the h-pylori.)
4th March 2004
Today was the day for the PET scan. I have to say that today was not one of my better days. I got into an argument with the nurse because I had not bought a companion along which meant that they could not sedate me. They finally agreed to do the scan without sedation. I cried today for the first time but I think that it was only because I was angry. I should have all of the results back by the 10th March
Posted by Possum at 04:11 AM | Comments (2)
July 14, 2004
A Bit of Background
This is going to be a bit of a long post because it will cover about four months of my journey so far with Cancer.
In September of 2003 I found a lump under my tongue. It took me until the 30th of January this year to get around to having it looked at. These are the notes from my own personal diary.
30th January 2004
In September last year I found a lump under the left side of my tongue. It has taken this long, but today I went and saw an ENT (Ear Nose & Throat) specialist. The specialist referred me to S.t John of God Ballarat for an ultrasound and x-rays. The ENT doesn't think there is anything to worry about. Probably just a blocked saliva gland.
2nd February 2004
I went to Ballarat today and had the ultrasound and the x-ray of the area where the lump is. I had the ultrasound first. The guy doing the scan did absolutely nothing for my confidence when, after he had done the scan, he patted me on the arm and wished me good luck! Doesn't sound to good. The x-ray came back all clear. This means that there is no stone in the saliva gland. The ENT's rooms will ring with the results in a few days.
4th February 2004
I went to work this morning as normal, just another day, no feelings of impending doom. (Stupid crystal ball must be broken again.) I received a call at work at about nine thirty in the morning. It was the ENT's rooms wanting to know if I could be in Ballarat by 2pm for another ultrasound and a fine needle aspiration of the lump. No Problem. It is only an hour and a half from where I work to Ballarat. I kept working because I had plenty of time to get to Ballarat, or so I thought. I got another call at ten forty five to tell me that I had been booked in for and urgent MRI at 12:30. Yep! There is that sense of impending doom that has been missing all morning.
I stopped at home and picked up my husband and my mother. We finally made it to the MRI and we were only fifteen minutes late! After experiencing a full body MRI I can honestly say that I know what it would feel like to be the inside of a biro. I also discovered a wonderful fact about myself that should definitely be stored away for later reference. I am claustrophobic!!!
The three of us, Mum, Kev and I, ran from the MRI centre across the road to the Ultrasound centre because we were now running late for that appointment as well.
I would just like to say the person who said "FINE" needle biopsy must have been standing on the other side of the room when they looked at the needle and called it fine! At this point I definitely was starting to feel more than a little scared. The doctors and the nurse were standing over me and talking to each other as if I was not in the room. I did voice my concerns and let them know that I would definitely like to be included in the discussion. I finally got out of them that they planned to numb my chin and insert a needle through there and across to where the lump is. The needle would then take a tissue sample of the lump. They also told me that they would keep doing it until they felt that they had a good enough tissue sample. I thought that sounded fair so the procedure was begun.
After the anaesthetic was administered the biopsy needle was inserted at the point of my chin just under the jaw line. The needle was then guided, with the assistance of the ultrasound, to where the lump is. Let me say that although they did administer local anaesthetic and my chin was numb, the rest of my face and the area that they were biopsying most definitely was not! They took two samples which they were not really happy with and were just lining up to have a go at getting a third sample when I took the doctor by the wrist and told he that I would be f#@*!d if he would be doing that again! Needless to say that they had to be satisfied with just two samples.
After these two appointments I went over to the ENT's rooms. He assured me that he was just erring on the side of caution because then anything better that the worst news would be great. The ENT rooms will ring with the results
6th February 2004
I could not wait for The ENT rooms to ring so I rang them. They told me that they did not have the results. An hour later the rooms rang back to tell me that the ENT specialist would like a word with me. He told me that the results for the FNA were inconclusive and that the MRI had only showed the mass under my tongue. He also said that he did not feel comfortable leaving the lump there and that he had scheduled me for surgery on the 9th February. Now that it is crunch time I would just like to say, "It's my lump and I have grown quite attatched to it, can't it stay a little longer?" I am an absolute chicken when it comes to surgery. Finally common sense prevails and I agree to the surgery.
Posted by Possum at 04:10 AM | Comments (2)
