Saturday, 17 December 2011

Pins and Needles....without the Pins.

WARNING: There are photos of me injecting myself. If you are afraid of needles, then best you dont look :)

I dragged my needle hating lover out of bed this morning to document what has become my daily routine. 8:20am every morning I inject myself. I cant say why is become that time, it just has. The aim for this blog is to share the routine and to also give you an outline of what "Hodgkins Lymphoma" is.

When I was first diagnosed, a lot of people would say to me "is that the bad one??" when I told them what I had.....I never really knew how to react to that and kind of didn't know what they meant by it. Any form of Cancer is not ideal to be completely honest!! I would rather have no form!! BUT after finding out exactly what Cancer I had and the differences between "Non-Hodgkins" and "Hodgkins Lymphoma", I understood peoples reactions.

"Lymphoma" is the general term for cancers that develop in the lymphatic system.Lymphoma originates from lymphocytes that have gone through a malignant change. They multiply without any order, forming tumors, which are made up of cancer cells. These tumors cause swelling in the Lymph nodes and other parts of the body. After a while, Lymphoma cells crowd out normal Lymphocytes and eventually the immune system becomes weakened and can no longer function properly. There are actually 35 different types of Lymphoma currently. Five of these sub-types belong to a group of diseases called Hodgkin Lymphoma and all the others are grouped together under non-Hodgkin Lymphomas. About 75 New Zealanders per year are diagnosed with Hodgkins Lymphoma (Dont know where the hell I got my first statistic in the first blog haha,) most commonly between the ages of 15-30 years and 50-70 years.

Hodgkin Lymphoma may affect a single lymph node or a group of lymph node or can affect other part of the body such as the spleen, liver and bone marrow. In more advanced stages, Hodgkins Lymphoma can spread via the lymphatic system and the blood, to almost any part of the body. DONT FREAK OUT!! I have Stage 2B Nodular Sclerosing Hodgkins Lymphoma, which just means that the Cancer is in two groups of lymph nodes. In my case, my neck and in my chest. The B means that I have the symptoms associated with the Cancer. These include fever, night sweats, unexplained weight loss and itching of the skin.

When I found out I had Cancer, I wanted to know what I had done to get the Cancer and where I had gone wrong. I like to think I am a healthy terms of my diet. Sure I have no problem admitting I like the odd KFC hit but I do eat healthy. The only thing really that lets me down is the fact that I dont exercise....L to the AZY.

They dont really know what causes Hodgkins Lymphoma. They do know its not contagious....!!!! There is some evidence that people are more at risk of developing HL if their Immune system has been weakened either by a VIRAL infection such as HIV (Happy to say that I dont have Aids!) or as a result of the use of drugs which affect the function of the Immune system. These drugs are commonly ones used when someone has an organ transplant. This made perfect sense in my case. I had Viral Meningitis when I was about 3 years old and also had a very lengthy period where I had Glandular fever. So basically I am F****D! Haha When I think about it, no wonder my Immune system is shot! We have no family history of this particular Cancer and that is often the case with Hodgkins Lymphoma Patients.

I dont know much about Non-Hodgkins Lymphoma but I do know that it can rapidly spread and if you have that form of Cancer, you have a high Chance of it becoming Leukemia also.

I met my support Nurse last week :) She is lovely. She is basically there to support me and answer any questions I might have and also if I need any help getting to and from appointments etc. It was so great to talk to her and I loved how honest she was. She warned me of a few things that I had already picked on with people and how they react to finding out. It was just good to know that I wasnt wrong with how I felt with certain things.

We spoke a bit about Chemo. When I think about Chemo, I feel sick and want to cry a little. I am scared, even though I know that I am going to be ok and could be going through a lot worse of a treatment plan. I am SO lucky with the treatment plan I will be receiving.

I received a letter from my Doctor that she puts together for my GP and Fertility Doctor, following the PET scan in Christchurch which went as follows "The plan once her Fertility treatment is complete, is for six cycles of ABVD chemotherapy and on completion of this, she will almost certainly require consolidation radiotherapy for three to six weeks down in Christchurch.".......Gee Willy! I am really hoping that the Chemo will be enough to get rid of the Bastard.

My nurse went through some of the side effects that I could expect. Things like Nausea and vomiting I expected but there were some things that I wasn't expecting.

The thing that surprised me the most was how much my mouth could be affected. Changes in taste and smell and also a thing called Mucositis all can occur during Chemo. Mucositis is inflammation of the lining of the mouth and throat. The aim of Chemo is to attack fast growing cells (which is what cancer is) and your mouth area is made up of those cells, so it takes a bit of a beating. Oral Hygiene is extremely important but I am a bit of freak with that already so I am sure I will have no problem. Hair loss is something that I am ready for. I know of a guy that was Diagnosed with the same thing as me the week I found out that I might have it. He has had about 3 rounds of chemo already and has had limited side effects. Hasn't even started to lose his hair so that gives me a bit of hope that I might not have to much trouble with side effects. I know everyone is different but heres hoping that all will be smooth sailing :)

My Nurse also told me about the sickness benefit etc. While I should be fine with working through the treatment she said I should definitely check out how much I am intitled to incase I have a bad time with side effects etc. This meant having to go into WINZ and picking up a form. The first time I went in the place was packed! There was no way I was waiting round....Hate to sound up myself but I felt quite uncomfortable in there...So I left. I decided to go to a different and smaller branch.

In I went the second time and there was no one around!! YES I thought! I will be in and out with no problems. I went to the reception and a lady came over. I will be completely honest and say she looked like she couldn't give a S**T and didn't wanna be there. Made me a little nervous. I said "Hi. Im here to pick up a Sickness benefit form." Said sweetly and with a smile. She just stopped in her tracks and stared at me....Im not joking. Looked me up and down and hesitated. GREAT! A mexican stand off in WINZ! I stared back waiting for her to give me the form. She hesitated some more and I could tell she was thinking "You dont look like you need it." So I just said what I hate saying. "I HAVE CANCER AND WILL BE STARTING CHEMO IN JANUARY.".....She started walking towards me a little bit more, still eye balling me. She got the form and before handing it to me she held it close to her body and gave me one last scan before saying "You do realise you will need a doctors certificate to prove you are sick...." I could not believe what I was hearing. I grabbed the form and walked out. My Nurse had warned me about going into WINZ and now I know why. I considered ringing and complaining but I left in such a rush I didn't think to look at her name badge or anything and really I just couldn't be bothered as it probably wouldn't change her attitude.

I also thought that she probably deals with all sorts and lets be honest I wouldn't like to have her job. I decided that its just one of those things and I will not let it bother me! It just amazes me that people can judge so easily. You pass someone in the street and you have no idea what is going on in their life. I have made such an effort to remember this. Apart from that everything has been great.

I have had no problems taking my injections. I have found that I cant stick the needle into the left side of my tummy. For some reason its a heap more sensitive than the right. I can just stick the needle in without feeling it now :) PRO!!! My friend finally decided to show her face. A week late but thats ok. We will let it slide. I have a blood test next week to see how my levels are looking and then we will start different drugs to prep me for my egg harvesting. The egg harvesting wont be happening till about the 9/01/12, which means my chemo start date will be pushed back as-well. Not bothered.

I am plodding along and have lots of exciting shoots coming up!! We were fine during the recent floods here in Nelson. Have to admit it felt weird to be in another State of Emergency. Was a scary time for a lot of people!! We had a bit of flooding up our sreet but nothing serious :) Was a little annoying and freaked me out with having so many shoots coming up, I just wanted the rain to stop!!! Christmas in a Week :) I am getting excited now. Mainly for the food and good old fashioned family fun. Cam and I managed to get all our Christmas shopping done yesterday. What a relief!!!

The above photo proves to the cynics that I do have something to stick the needle into it!! I know I have lost a bit of weight but I eat enough food to make sure theres something left haha I havent really noticed much change in my body since starting the injections. My Boobs are fuller....Not bigger, just feel fuller somehow. Also my ovaries are FULL! To the point where the other night I was feeling quite uncomfortable and I felt the ovary area and I was so bloated. FULL OF BABIES!! My fiend Phily said yesterday "Look at you walking towards me with those full ovaries." Haha it made me laugh so much. I like it that we can laugh. Through it all, there is reason to laugh and that is because Life is so good!! Laughing about it all makes it easier and if it helps others, feel free to crack jokes about my ovaries. Not quite at the joking stage with Cancer just yet but knowing me and my family we will get there.

And that my friends is the last photo to show my daily routine. Not very exciting really. Done and dusted in about 2 minutes. FYI - I have tried making the photos bigger but this is as good as it gets. You can click on the photos to make them bigger if your abit of a needle freak and wanna take a closer look :)

Thanks for taking the time to read my blog. I hope its been an interesting read and you have learnt something. I just want people to understand what I have. Saves the questions :)

If I dont blog before Christmas, I want to take the opportunity now to wish you a very Merry Christmas and a Happy New Year. If you are traveling, be safe! Enjoy the company you keep and fine wine you drink! I havent had a drink since finding out about the bastard and will treating myself to a few tipples on Christmas :) will probably sit me on my arse!!! But really, I hope you have a lovely Christmas. This year has been a real shitter of a year! No censoring that one because its the truth. I dont like wishing my time away but I cant wait to see the back side of 2011. It has been a year that has changed my life, much like a lot of people. It will be one we never forget! Heres to 2012! The year of new beginnings and kicking some serious Cancer Arse!!

Love to each and everyone of you! A.x

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