my journey so far

2 minute read time.

Where to start... im a 23 year old aussie female. Up until a month ago I was a happy hairdresser, first home buyer and thinking of starting a family. I could feel a big change coming, but I didnt see this. 

It started off with finding a painless grape sized lump just above my collar bone. Being a hypochondriac, I freaked and went to the doc asap. Luckily she booked me in for an ultrasound straight away instead of sending me away and just seeing how it goes. Ultrasound showed not just 1 but 4 enlarged lymph nodes. Booked in for needle biopsy for 3 weeks later. After the ultrasound I was on my way to work when I got a call from my gp saying it was urgent. Holy crap.. that was the first time I really thought it was something serious. She went through everything it could be.. cancer came up. I thought of that the moment I found the lump, but it couldnt really be cancer though, could it? Had a blood test done and she managed to get me in for the needle biopsy 2 days later, on xmas eve. Was pooping my pants of the thought of having needles jabbed in my neck but it really wasn't as bad as I had imagined. 


New years eve was the day my worst fears were confirmed. It was cancer. Hodgkins lymphoma to be precise. I just sat there and cried.. trying to take in what she was telling me. Made me feel better by telling me that if you had to 'pick' a cancer to get, that's the one. Next step was to meet my onc so find out what stage I was. The next few days I felt such a heavy fear, it felt like it was drowning me.  Luckily I had a good support system around me. 


Next few weeks consisted to seeing god knows how many doctors, blood tests, a PET scan, CT scan,  surgery to remove a lymph node, and another surgery to remove cysts that were found around my ovaries. I was certain after something abnormal showed up around my ovaries that I was a later, unfavourable stage. 


When I went back to see my onc she staged me 2b and said it hadn't spread anywhere past my neck! No words can describe how releived I was.. I felt a bit ridiculous being so happy.. but I just felt so lucky that its early stage and favorable. The plan is to do 4 cycles of ABVD. To my surprise she wanted the start treatment the following day, seeing as id had a few setbacks. 


After i left that appoinment i went straight into the salon where i work and got my best gal to do the big chop for me. I went from having thick curly hair past my boobs to a little pixie cut and i love it! I knew cutting it would make it easier when it started to shed.


 Anyways, here I am 4 days after my first  treatment, honestly feeling better than I was expecting I would be. The best way to describe it is feeling like I hav the flu but without the runny nose. Im just waiting for it to hit me.. I know its just the begining and im terrified of what its going to do to me. did anyone feel like this in the early days? I know everyones different but id like to hear some peoples experiences with their journey, thank you for reading and hopefully sharing! 

Anonymous
  • FormerMember
    FormerMember

    Hi dee

    I got diagnosed in July last year and completed treatment in December. Tbh I found ABVD very similar to your experience and expected it to be a lot harder than the affects appeared to be as you mention everyone is different. I was one of the few that needed to change regime to BEACOPP so can't comment on the full ABVD regime. But whilst on ABVD I found that after a few days I was 90% normal and could carry on as such. I was quite cautious and so avoided any infections. Overtime the accumulation does take more affect so your energy levels may drop but I am already starting to notice how much better I feel than whilst on treatments.

    There are lots of experiences in the groups and if you open a group thread you will get more responses than on the blogs.

    Keep on ticking the boxes, if you have any questions then do ask.

    Rich

  • Hello Dee,

    So sorry you've needed to find this site, but as Rich has just said, do join one of the 2 groups for HL and you can begin your own thread there, one is called Hodgkin Lymphoma, the other Lymphoma, Hodgkin's. (Stems from the time folk could start up their own group)

    Good for you taking control and dealing with your hair! It can be upsetting when it comes out, and getting a pixie cut takes a lot of the weight from the roots.

    Our daughter didn't lose hers completely with ABVD, but like you she had it very short. Some folk lose the lot, some don't, there seems no real reason!

    Keep posting, keep on trucking!

    Hugs xxx

  • FormerMember
    FormerMember

    Thank you for the advice, just joined a group now :)

    Im sorry abvd didnt work out for you rich, how did you find beacopp compared to abvd? Glad to hear your feeling better already :)

    Thank you moony, how is your daughter doing these days?

    Xx

  • FormerMember
    FormerMember

    Thank you for the advice, just joined a group now :)

    Im sorry abvd didnt work out for you rich, how did you find beacopp compared to abvd? Glad to hear your feeling better already :)

    Thank you moony, how is your daughter doing these days?

    Xx

  • FormerMember
    FormerMember

    Hi Dee

    I kept a blog community.macmillan.org.uk/.../weblog37, which helped me. BEACOPP is more intense, the majority will find ABVD works but it's good to know that they have a big cupboard of chemo options.

    Rich