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Hi Everyone - new from South Africa - a bit scared and lost

kylanel01's picture
Posts: 11
Joined: Jan 2012

Hi Everyone

My name is Kyla and the last 3 weeks of my life have felt like intolerable cruelty. The only thing that got me to today was God and praying. On 1 November my neck swelled and I got DVT's in both my major veins. Had a operation on 3 November to try open the blood flow to my right arm and was off home going on a cruise with my family to Mozambique. Little did I know that would be the last time I would feel "normal". Almost as I stepped off the cruise liner, my life changed forever and will never be the same again. I guess that is not always a bad thing but anyway.

On the 19 December I rushed to the ER as my neck had now started swelling outwards and I thought I was bleeding due to the DVT's. A CAT scan and a few hours later and the diagnosis was Lymphoma or some other cancer as there was a mass around my neck and going down into my chest.

Had a terrible Christmas day, almost in a fog, where I was shaking and trembling and trying to eat at a restuarant my Dad had booked for us so that my mom didnt have to cook. I could barley stand as I still did not know what was going on. As the ER doctor told me = this is a terrible time to get sick.

So.... after being told I could be operated on on the 9th January I took matters into my own hands and called my dads doctor - as he had just gone through Leukemia - and she told me to bring all the stuff to her immediately. She booked me for a biopsy the following day.

I then waited a week - again so scary and so unsure of what was happening. Was it thyroid cancer, thymus cancer, Lymphoma or something else? Then I was told the doctor had my results could I come see him. That was 3 days ago and he confirmed I have Hodgkins Lymphoma Nodular Sclerosis.

I was in the hospital on Friday to get a port put in and am waiting to hear when the Chemo will start. He said he is going to use BEACOPP - standard baseline. I am not even sure what that means. I just know that I am a mommy, just had a beautiful baby boy, Declan who is now 6 months old and another little man Keagan who is turning 4 and I am so so scared.

I believe in God and in Jesus and the Holy Spirit and I do believe things happen for a reason, but my mind goes mad on me and I start getting thoughts of what it will be like in the end, and then I have to get myself out of it and think positive!

Help anyone?

COBRA666's picture
Posts: 2413
Joined: May 2010

Welcome to the place we all know you hate to be.I am sorry you have to be here at all. You will find a lot of supportive people here.First of all what you are going thru and feeling is normal as normal can be. We all went thru it. Its a hurry up and wait thing for a lot of us. In the meantime we are nervous with all kinds of thoughts going thru our heads.There are many types of chemo they use with lymphoma today. They have come so far in the treatment in the past few years. It is not a death sentence by no means. Yes it is a life changer. I was diagnosed in May of 2010 with Follicular NHL and went thru R-CVP with 6 treatments and now in remission. I have to go back every 6 months for Rituxan infusions. We just have to see what your Dr. has in store for you as far as scheduling. You will be OK even though at times you will have doubts because you do not know what to really expect. This is all unknown territory for you. We know exactly how you feel. Any thought that has gone thru your head has probably gone thru ours when we were disgnosed in the beginning. BTW: Stay away from those websites about lymphoma. They can offer some basic info,but they are outdated. There is a site that is updated. There is a member on here that I know will be contacting you and she has posted it. I have it ,but as usual I can not find it.Please keep us updated as to your progress. You will be fine. John(FNHL-4A-1-5/10)Stage 4 no symtoms grade 1 and diagnosed May 2010

kylanel01's picture
Posts: 11
Joined: Jan 2012

Hi John - thanks for the reply.

anliperez915's picture
Posts: 772
Joined: Sep 2011

Hi Kyla,
Sorry that you have to be here, just wanted to welcome you to the board. I have Follicular NHL Stage 4, with spleen, liver, and bone marrow involvement. Sorry that I can't help you with therapy questions I'm currently on watch and wait therapy. I was diagnosed in August of this past year, I also have 3 kids and a hubby so I know the fear that your feeling for your young children. My youngest is a 3 yr. old and we get scared of the uncertainty of our situation. But John is right we have to think we're going to be fine, we have to stop thinking crazy ideas because that only affect us negatively. I wish you only the best in your treatment to come and think positive thoughts.

tall floridian's picture
tall floridian
Posts: 95
Joined: Dec 2011

Like you I am a born again Christian and have my complete trust and faith in Jesus Christ and believe with all of my heart that everything that takes place in my life is God ordained. In June of 2011 I was diagnosed with 4th stage non Hodgkins lymphoma after suffering a terrible staph infection and during a pet scan the lymphoma was discovered. I was completely overwhelmed and felt helpless and hopeless. While lying in bed in the hospital I wondered if I would ever be able to play with my new grandaughter - see her grow up and would I ever enjoy family holiday's again. After recovery from the staph infection and time in a medical rehab I came home very weak and with many questions. I was wheelchair bound and fully needing complete feeding and cleaning and couldn't even dress myself. All looked hopeless and I wondered if my time was up on this earth. The day I came home my blood doctor called and set up an appointment for the next two days to begin chemo therapy. I went the next day and found my doctor and his RN nurse so helpful answering many of my questions and was ready to begin chemo therapy. That day was my first treatment and the next day the second round. I was so weak it took 3 people to lift me from my therapy chair back to my wheelchair. I never felt so helpless in my entire life. Today, after going through 6 months of chemo I have progressed so much. I am walking without my walker- eating almost my regular food and go for maint. chemo once every two months. My strength has improved very much and I owe it all to my prayers and the dedicated staff at my blood doctors office. I can look forward to 2012 with a positive outlook on life knowing that God's in control and everything is in His hands. My prayers are for you that God will heal you and make you new. Trust Him for He does want the very best for your life.
Take all of your medications and listen closely to your doctor and follow their instructions and trust God to walk every step with you through this experience. Hugs - Steve

vinny59's picture
Posts: 1032
Joined: Nov 2006

I can only add to what all my friends here said, take it a day at a time, try to stay as positive as possible, draw on the strength of your family. You can beat this, we are all proof of this, I beat it twice! Stay well ...... Vinny

cathyp's picture
Posts: 365
Joined: Dec 2009

I too was dx'd with Hodgkins Lymphoma Nodular Sclerosing. That was 22 years ago. I was told 1 week before my wedding that I had a large tumor wrapped around my heart and would nead thoracic surgery after my honeymoon. It's always a cruel story about our diagnosis. I did have a recurrence, 5 yrs later, when my daughter was born. It took it to another level for me when I had Hodgkins and now was a mom. At that time, I worried I wouldn't be around for milestones like her sitting up, saying Mama, walking....Well, she is now 18 and in college and her sister is a sophmore in HS. As I was going through treatments and prayed, I soon stopped looking so far ahead and took it a day at a time.

You will have a lot of support on this board from current and recent survivors. I thought you'd like to hear from a long term survivor as well. All the best to you as you begin your journey.

kylanel01's picture
Posts: 11
Joined: Jan 2012

Thank you everyone for the messages. I have a friend who visited me yesterday and she told me she had Hodgkins Lymphoma when she was 15 and that was 20 yrs ago!! I never knew as she doesn't talk about it. Another friend told me her Uncle had it and is great today. I have to go for a PET scan tomorrow. Nervous!! Please pray for me xx

kylanel01's picture
Posts: 11
Joined: Jan 2012

Also, my bosses Pastor battled Hodgkins Lymphoma last year. He has a church in Johannesburg-you can google him and read all about what he went through. Very inspiring!

Posts: 6
Joined: Jan 2012

Incredible stories, you all seem so brave and I hope I can settle down and gget to where you are. To Kylan, my thoughts are with you, I'm new too , so don't have much concrete to offer.

po18guy's picture
Posts: 694
Joined: Nov 2011

In May, 2008, after finding an enlarged lymph node behind one ear, then experiencing night sweats, spiking fevers and weight loss, I went through a series of mis-diagnoses, each of which stated that I had a virus. I ran for my life and went to Fred Hutchinson in Seattle, where I learned that I had an aggressive lymphoma (Peripheral T-Cell Lymphoma - Unspecified) in stage IV. It was in over 50 nodes and in my bone marrow. My prognosis was poor. There is no standard treatment for it. A clinical trial is recommended - if there just happens to be one. At stage IV, my life expectancy was 2-4 months if it did not respond to treatment. Doctor administered four months of dose-intensive chemo (CHOEP + GVD), with a one-in-three chance of responding. It was stopped due toxicity. I went into complete response, but immediately relapsed. The prognosis was now "very poor." All that was left was "salvage therapy" and best wishes. At that time, a clinical trial providentially appeared. It put me back in complete response and I remain there after almost three years. Has it been an easy journey? No, but it was a necessary one for me. Faith got me through all of this, and faith will get you through your journey as well. Our lives hang by a thread - a thread called prayer. And, prayers are ascending on your behalf.

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