It has now been four months since the last of my thyroid gland was removed. I planned to write an entry one month after, three months after, and six months after and include pics of the scar but I kept forgetting to get my daughter to take the pics. I did, however, manage to get pics one month after and four months after so they will have to suffice.
Just to recap for anyone who is not familiar with what has been happening to me. I was off work for about six weeks in February of 2012 during which time I had two operations. The first was to remove half my thyroid gland because of the large lump that was inside it and, when the lump turned out to be folicular cancer, I went back to have the rest of my thyroid gland removed 20 days later. You can read about both operations in my earlier entries. In this entry I want to summarize the after effects so far.
After the second surgery a lot of things I had been suffering from improved temporarily for about a month. The swelling in my ankle went down, the breathlessness improved, the nausea, heartburn and diarrhoea stopped and I was feeling quite good apart from one thing.
I constantly felt like there was a lump in my throat and a tightness across it. Looking back at the pics my daughter took one month after surgery it is not surprising it felt that way as the swelling was much worse than I remember it being. You can see how much it was swollen in this side-on photograph even though the lighting isn’t very good. The swelling all seemed to be above the scar itself.
The sensation of having a lump in my throat was pretty awful and sometimes I would get so caught up in the struggle to swallow it that I would vomit. It lasted for a couple of months until I put two and two together and came up with what seems to have been the solution.
At first I thought the problem was being caused by the swelling above the scar as the flesh was so swollen it felt really hard but the symptom got worse as time went by even though the swelling went down and the flesh softened.
My research of other peoples experiences showed this was common with people complaining they felt like they were being strangled and having trouble swallowing for years after surgery.
I remembered the surgeon telling me, after the second surgery, that “everything was pretty well stuck down in there” and I wondered if that had anything to do with the problem. I did a search on the internet using the terms “surgery” and “stuck down” and came across the term “adhesions”. Adhesions occur when scar tissue sticks to surrounding tissues and I think that is what was happening under my scar.
My doctor advised me to massage the scar making sure to massage along the scar (ear to ear) not across it (head to toe). Massage is also recommended on the internet to prevent or break down adhesions so I began using bio-oil to massage the scar tissue. It was awkward and I’m sure I didn’t do it right but I found the symptom did improve and now, four months later, it has almost gone completely although there is still occasional discomfort.
Two months after the second surgery I got a letter telling me hospitals are required, by law, to report new cases of cancer. I learned I had been placed on a cancer registry without my knowledge or consent and that made me feel like I was some kind of criminal! I wrote a blog entry about it but couldn’t be bothered posting it. My energy levels were already on the way down after the first change to my medication by then.
Every four weeks I had to have a blood test and, a week later, go and see the surgeon to find out if my medication was having the right effect.
At my first appointment, five weeks after surgery, they said my calcium levels were bordering on too high which meant my parathyroid glands were doing their job and I could stop taking the calcium supplement they put me on after surgery. They said my TSH (I think that stands for thyroid stimulating hormone) was too high so they increased my dose of thyroxine.
They want my body to stop calling for increased thyroid function because it stimulates growth in thyroid cells. In a cancer patient growth of thyroid cells can mean growth in cancerous thyroid cells too which they don’t want so they increased the dose of thyroxine medication in an attempt to force my body to stop producing TSH.
They put me on the waiting list to have radioactive iodine treatment and also referred me to another hospital to see an endocronologist as, I gather, they don’t have one at the hospital where I was operated on.
My reaction to the increased dosage of thyroxine was a return of the old symptoms. My ankle swelled back up, heartburn, diarrhoea, fatigue and breathlessness all came back and I began feeling like crap again. The only thing that didn’t come back was the nausea and chest pain.
Five weeks later the surgeon increased the dose again. Three days after seeing the surgeon I saw an endocronologist who increased the dosage even more and told me to start taking 4000 iu of vitamin D3 because I was still deficient in the vitamin despite taking 1000 iu a day.
I had been suffering from dry, irritated, eyes before I started taking the vitamin D3 and the right eye had gotten so bad it almost always felt like an eyelash or something was irritating it. Once I began taking the vitamin D that problem went away and it hasn’t come back.
The endocronologist also said I had developed antibodies to the thyroxine and he wants me to get tested for coeliacs disease which I haven’t done yet.
My reaction to the higher dose of thyroxine was the chest pains came back and I got even more heartburn, diarrhoea, fatigue and breathlessness.
At my last appointment with the surgeon my blood tests showed there is something wrong with my body’s ability to absorb vitamin D3 as the test showed my level has gone down despite the huge increase in the dose I’ve been on.
The same blood test showed there is also something wrong with my body’s ability to use the thyroxine that I am taking.
There are three main thyroid blood tests – T4, T3 and TSH. THS is what stimulates the body to produce more T3 and/or T4. T4 is what I am taking every day. Various organs in the body, including the liver and brain, remove one molecule from T4 and release the rest back into the body as T3. T3 is what speeds up metabalism and causes weight loss etc. If you have high T4 levels it is expected that your T3 levels will be high too.
My last blood tests showed my TSH is down which is what they were aiming to achieve and my T4 is up thanks to the increased thyroxine dosage but I have NO T3 level. To be specific – the test level was recorded as “–” which sucks big time because it means no weight loss for me!
According to the internet the failure to convert T4 into T3 is a sign that I may have another disease but I’m not worried.
I’m actually very fortunate because my faith in God allows me to relax where I’m sure others would be suffering considerable emotional distress over all this.
I know, without a shadow of a doubt, that God is in control and whatever happens will be His will. If it is His will for me to die I am fine with that because I know death is just the door I have to pass through to meet God face to face. I would like to meet God face to face so I am ready to go as soon as He is ready to summon me!
If it is His will for me to live I am fine with that too because He has been working to make my life pretty comfortable in every area apart from the health thing lately. I have almost completely paid off all my debts, I have managed to save a small amount of money which will grow much faster once my debts are gone, my gambling addiction is under control, my roster at work is about to change for the better and my children and I are planning to take a holiday together and go check out some other part of this lovely world of ours next year.
I’m actually not in any hurry at all to die these days which makes a nice change!
My only real complaint is my poor health. I feel crappy most of the time for many reasons but I have been feeling increasingly crappy for many years now so I’m used to feeling this way. I actually feel slightly less crappy at the moment because the constant nausea I used to suffer from has gone!
The thing that stops me from actually enjoying my life right now is the lack of energy I am experiencing. I have no physical energy which is to be expected I suppose but I also have no emotional energy which sucks.
Every day I have to lean on God for the physical energy I need to do the things I have to do like feed myself, shower, do my washing, get myself off to work and so on. I have none to spare for cleaning the house, taming the garden, visiting my friends or family, making phone calls, seeing the sights around town, going dancing, writing these blog entries, working on my abuse prevention project or anything else.
All my emotional energy goes into trying to do my job properly and I just thank God that He is there with extra patience, compassion, empathy and wisdom whenever I am confronted with an unfair workload or difficult callers.
You would be surprised to know how many people call counselling lines just so they can call the counsellor ugly names, masturbate to the sound of a woman’s voice, make anonymous threats, manipulate someone, yank their chain to see if they can make them lose their cool or simply to complain about anything and everything from lack of money or no love life through to the state of the world and the worthless nature of mankind or, more often, womankind in general.
I count myself lucky if I have a shift where I have gotten one single call from someone who was actually in distress, wanted my help, and actually felt better after talking to me! If I get two such calls in a shift it’s like winning the lottery and I don’t know how I’d feel if I got three because it has never happened in the seven years I have been working there!
The job is taking more and more out of me these days because they keep getting new contracts and adding new lines to my workload. To make matters worse they keep putting new recruits on with me and they are not able to share the load because they are not trained to take calls on all the lines.
When I first started work in this job I used to take calls on one to three lines. Now I have to service anything up to eleven different help lines. My most recent shift involved taking calls on nine different help lines all by myself as the staff who were supposed to be on with me had either called in sick or were on holidays. There were three people staffing the two lines I was not rostered to answer that night but none of them were qualified to help answer any of the lines I was on!
In between shifts I pretty much run on empty except when I’m confronted with a need. If one of my children has a crisis or someone comes to me needing help, even some stranger I meet in a smoking zone, God provides me with some emergency rations and I can usually meet the need.
He can even supply me with additional physical energy if the need arises. Today He gave me enough energy to make it through a trip to the zoo. When my sister-in-law and niece came to visit I suggested a trip to the zoo because I thought I’d be able to cope and I wanted them to have a good time. Minutes into the visit I realised I’d bitten off more than I could chew when my heart started racing, pain flowed from my chest down into my left arm, my ankle blew up and began throbbing and my left hip and right leg started hurting. At some point the pain in my left arm went away but it was replaced by pain in my right shoulder, two sore feet, and an aching back. By the time we were ready to leave the zoo I was moving at a snails pace and limping.
I was determined not to spoil the visit for everyone though so, with God’s help, I managed to keep going until my sister-in-law was ready to leave. By that time I hurt so bad I didn’t think I could make it to the car. When I got home I crawled into bed hoping rest would put things right which, for the most part, it did. Without God’s help, however, I would not have made it through more than 30 minutes of walking which would have spoiled the day for everyone and caused me to miss out on seeing what I paid to see.
I’m scheduled to have radioactive iodine treatment in about 10 days time and, whilst I am not looking forward to it, I know God will help me get through it and whatever comes after it.