Letters to Jodie

LETTERS FROM READERS & PATIENTS TO JODIE

Letter from Mrs Rachel

Hi Jodie,

I first of all would like to thank you for your web page. It is the first time in six months I have felt like someone might understand what I am going through. I understand that you are probably very busy, but I was wondering if you could tell me what I should do next in my mission to get a diagnosis sooner rather than later. My GP has been supportive but is not adequately informed about lymphoma and its symptoms.

I have had right arm pain, severe fatigue, dizziness, nausea, weight loss, swollen glands and nodes in neck, collar bone, under ear jaw pain, upper right quadrant pain and occasional lower back and right leg pain. We have two children 18 months and 7 years and have also previously attributed my fatigue and ongoing pain to breastfeeding and being a busy mum.

My GP has run lots of blood tests, all of which have been normal and tested me for a whole range of things like diabetes, thyroid, RA, lupus and ross river and Bhamah forest virus. My question to you if you have time is what test/scan should I ask for to rule out Lymphoma? A CT, MRI or bone scan and biopsy?

I have also had an enlarged node in my neck, for at least seven years. In my gut I just know there is something going on in my body and I’m scared and a overwhelmed as to how to get the Drs to listen. I have recently taken prednisolone as instructed by a general physician and have also seen my chiropractor to try and feel better.

I understand that you are not able to give out "medical advice" - I am just hoping that you can share your experience and knowledge as our stories are quite similar and I am so worried for my babies.

Thank you and God Bless.

Mrs. Rachel

Letter from Ms Stefany

Jodie -

Was truly encouraged listening to you this morning on VISION radio...your story encouraged me to keep trusting in the Lord. I am sorry for all you have gone through in your young life but glad that you have had the best friend holding your hand - Jesus Christ.

I don't have cancer but I have a chronic illness, an autoimmune condition that affects my thyroid glands and joints...so everyday is a struggle but it has drawn me nearer to God - and a life of infertility and loss - I may not understand all you have gone through but I am encouraged by your story.

I want to find you on Facebook to keep following your story line...thanks for sharing your story - you are an inspiration to me and many I am sure - God bless you and keep you - I thought of the song "Through it all" listening to your story.

Ms. Stefany

Letter from Ms Rene

Hi Jodie:

I read your story and it is very encouraging. I however am scared out of my whits. I have been more tired lately. I have not been diagnosed with anything of some sort or nothing. Here is my story: Im 31 and have three daughters to live for.

In August I was driving and nearly passed out while driving, I started hyperventilating and felt like I was going to throw up but didn't. I immediately pulled my car over and rested my hands on my thighs and caught my breath, I felt like I was having a heart attack and felt very foggy and tired the rest of the day. I was heading to a meeting for work when this happened to me, the day before I was standing in the sun mostly all day and I believe I was dehydrated, so I thought I must have suffered a near heat stroke the following day.

I went to the ER the same day that I almost passed out and they did an x-ray and didn't find anything abnormal, did blood tests and did an EKG test and they found nothing abnormal. The following weeks, I have felt really tired and have not been doing my normal routines of running on the track or playing basketball at the park, I also cut out my pull-ups, push ups, sit-ups, you name it.

I then have been to the doctor several times in the month of November because I was following up due to pain in my left arm and rib area that continued 2 weeks after my near heat stroke episode. I still have pain in the left arm but since the doctor rulled out heart problems due to the following test. The doctor took x-rays and found out that I have a heart that is smaller than normal size, she had me do a echocardiogram and they found that it functions just fine no abnormalities, she just told me that I should be careful and to drink more water than usual. That was a relief.

I don't know if I'm being paranoid or not, but I also found that on my left clavicle I have a bump that is hard to the touch which could be a crack that happened earlier in my child hood to my collarbone, I also found that when I turn my head on that very same clavicle it looks as if I have an extra neck muscle connected to the bump/crack that is on my clavicle and I don't have that extra muscle on my right side of my neck and I noticed that I have a little pea sized bump that is movable in this area. Is this something that I should be concerned about?

I don't know anymore?

At my last Drs visit I showed the doctor what appears to be an extra neck muscle that is connected to my clavicle on my left side of my neck all she said is that it looks like a muscle that was overstrained and now sticks out. I now found that behind that extra muscle I could feel a pea sized lump that is moveable. I'm afraid of seeing the Dr again and having them just tell me not to worry. I have been very anxious and panicky since my incident in August and have been looking a lot of things up on the internet and am very scared.

I don't know what to do: can you please give me some advice?

Mr. Rene

Letter from Ms Glenys
Hi Jodie,

I read your article in 'That’s Life' Magazine and then your words about integrated therapies. It was a minefield for my daughter who has been diagnosed with Stage 4 Colon cancer. We decided to fund her to go to Germany to the Hallwang clinic where they have had lots of success stories.

My daughter is at present undergoing the therapies there including Hyperthermia, Ramovab, Ozone Therapy, Perfusion/Embolization at the university in Frankfurt. This is the best we could come up with amongst all the quacks and moneymakers online - we have met people who went there and came back healed which led us to the place.

Anyway, if you would like to follow what they do there you can follow my daughter as she goes through the treatment - she is on Facebook.

All the best,

Ms. Glenys

Letter from Ms Natasha

Hi Jodie,

I hope you don't mind me contacting you, after reading your story - I feel you are probably the only person who will be able to advise me as you have been through this.

I have been complaining about bone pain mainly in my hands for about 2 years, this led to being referred to Rheumatology. Various tests came back with nothing. They asked me to come back in 6months. In this time, I developed swelling in my left eyelid, this was followed by severe shoulder pain in my left side, my hands continue to hurt along with my arms and legs but all mainly on my left side. My left knee sometimes feels like jelly and I'm not able to walk on it for a short time. I'm also getting a lot of ear pain and neck pain.

My GP said she could not see any swelling and after several visits finally said 'What more do you want me to do?'. I then had my 6 month rheumatology appointment, I told him about my other symptoms and he sent me for an urgent CT scan of my entire body, this showed abnormalities in my eyelid. The eye doctors have said I have an inflamed muscle in the eyelid and tear duct, the Haematologist who I saw yesterday was referring to Lymphoma, both of these doctors are contradicting themselves and I have no idea what is going on.

I have no more appointments until the new year now and nothing has been done or changed. I don't feel I am getting the help I need.

Rheumatology have now said it is out of their hands and I have to get the eye doctor and Haematologist to communicate. I'm so unwell, always tired and my life is being affected by this in every way.

What would you advise I do in this situation?

My body pains just get worse and worse. The only way to explain it is that it feels like the life is being sucked out of me and I'm totally scared, but even more scared that nothing is being done. I'm being left to suffer like an animal and it makes me so angry.

Thanks for taking the time to read my email and I hope you are doing ok with your illness.

Take care,

Ms. Natasha

Letter from Ms Michelle

About 5 months ago l had a MRI on my neck due to tingling pins & needles in my hands & arms.

They were checking for nerve problems, instead they found multiple enlarged lymph nodes, my bloods are fine but l too feel very exhausted all the time.

l have a 3cm Lymph Node in my neck, doctors seem to think its not Lymphoma, but l have a feeling of something not right, l feel like l'm going insane. Was your bloods ok? How did they pick it up in the end?

Ms. Michelle

Letter from Ms Kellie

Hi Jodie,

I'm writing to you to thank you for your strength.

In 2012 my mother who was in remission for breast cancer was mis-diagnosed with COPD when in fact she was actually in stage 4 cancer. Twenty-six days later after a proper diagnosis she passed away at 48.

Although we will never know if it could have been prevented - your blog has kept me going...I myself now almost 29 a mother of 5 - have 3 lumps in my left breast. First scan said due to age probably Fibroadenoma. From your story I pushed and got a mammogram. They say the same thing, but my breasts are dense.

Still, I am not happy with the foreign thing in my body I pushed again and now have been waiting 3 weeks for an appointment to have them removed....I'm always tired and have lost 40kg in a few months. I'm not taking no for an answer and apart from having my children, losing my mum would be every reason to give up. I still have the Nov. issue of That's Life and whenever in doubt I re-read your story.

So many people fight battles alone and your story not only tells people about being brave and persistent, but it also gives hope. I hope you are well, and treatment is doing you well.

Much love and support,

Ms. Kellie.

Letter from Ms Catherine

Thank you for taking the time to help suffering people, you are amazing!

My mother died 10 years ago at the age of 77 from a very rare B Cell lymphoma three months after she was finally diagnosed.

We would not of known what she had died of if it wasn't for a caring doctor who was interested enough to take the time and do a biopsy.

Since my mother's death I have had to fight the medical system to get a diagnosis for my daughter, who was misdiagnosed for two years.

6 neurologists and many doctors later, telling her there was nothing wrong with her, putting her in mental health wards giving her electric shock treatment, misreading MRI's, many hospital stays, it was a very traumatic time for all family members. I will not go into all details at this moment in time.

I joined a worldwide support group at the time, I still receive post from them, amazing people just like you.

I am not sure what the Lord has wanted me to learn from this experience, maybe to just keep trusting Him. I have Post traumatic stress syndrome and my daughter no longer has any contact with us for the past three years.

My daughter lives in Brisbane area, I live in Newcastle. On the 5th of August, three years ago - my great grandson was born with a life threating genetic disorder.

Babies born with MSUD sometimes die before they are two weeks old. He has a mild case and is doing very well at the moment.

I have been judged & criticized, by Christians - some people were downright nasty. Some Christians who think if you have sickness or genetic disorders in the family it's because you have sin in your life!!!

We haven't been committed to a church for over three years now but, we have been attending a church in the city on an irregular basis and have gone back to our old church on a couple of occasions last year and this year, we still go to Hillsong conference.

The Lords Richest Blessings to you and your family.

Ms. Catherine

Letter from Mr Paul

Hello Jodie

I too am in remission. I had all the same symptoms as you but no illness or swollen nodes just a diagnosis of terminal bone cancer!

Four tumours in spinal vertebrae, others in shoulder, hip, rib and lung. After lots of tests and six months of ever-increasing morphine, they removed the rib with a pathological fracture along with a bit of lung and discovered classic Hodgkin’s Lymphoma.

I find it a little frustrating that the obvious signs of Hodgkin’s were there but not identified by doctors. Night sweats, pain when drinking alcohol (the big obvious symptom) lethargy etc. I mentioned to a few doctors after diagnosis about the alcohol pain and they didn't know it was a symptom unique to Hodgkin’s.

But none of that matters now as I am alive and kicking, ready to do all that I can with my wife and two children and get back to normal ASAP. I was interested to read about the continued nerve pain after treatment as I too am suffering from it. I'm just hoping it’s for the same reason as yours. I have a Haematologist appointment this week so they will check it out. I hope you are doing ok and that you are still in remission. The blog that I read only went up to 2011.

I had considered starting a campaign to allow cancer sufferers on chemo to legally shoot 'moaning sods' with coughs and colds from complaining how ill they are. I'm sure that thought had crossed your mind a number of times. Fancy joining the campaign?

Kind regards,

Mr. Paul

Letter from Mr Lisa

My boyfriend is having all kinds of issues - swollen ear has led to TMJ soreness - can't open his mouth up, or chew in the back, his entire left side of face feels numb, or hot or the pain is so intense he throws up.

He's been to hospital (2 of them) doctors, they all say different things and he's on 2 types of antibiotics, but nothing is helping. He's forgetting things and thinking we are having this big conversation, when we are not.

He seems to be having most of it in his head - then coming up with random sentences about it. he has vertigo, and he’s been drooling as well.

Please help us!

Ms. Lisa