So Now What??

[AmandaC]

Well I have reached my 3 year mark, 3 years since I had the dreaded RAI and was locked away from the world for 4 days. 3 years since I was forced to stay away from my husband and baby for 1 month…and what have I done! The truth is I have no idea. It really just feels like yesterday the memory seared clearly in my mind and it struck me I have to now move forward, but how? What does that mean exactly? Its not like someone wrote a manual or a10 point system. If they did it mine would look something like this: 1. Get diagnosed with thyroid cancer at 28 when my first baby is 2 months old. 2. Have to leave Sydney due to illness being a heavy financial burden, grandma tries to commit suicide and family disowns me. 3. Grandad dies of dementia related stroke and father inlaw looses his battle with Bowel Cancer. 4. Get to 1 year mark and am now allowed to have more babies only to find out my husband has testicular cancer. 5. HOLY F*** bought a house and now undergoing the 2nd round of cancer and heavy medical financial burden. 6. Husbands on chemo when we start IVF to try and realise our dreams of more children. 7. Have a rough pregnancy and have to finish work at 26 weeks, more financial burden. Then have our beautiful 2nd baby boy. 8. Husbands 1 year clear mark 9. Reach the 3 year clear mark so far without a hitch, except psychological scars. 10. Move on, LOL!!!! Seriously does this look like the list of aspirations we all hope and dream of in our early 30s. While most of our friends are traveling, getting pissed and buying wanky designer clothes we are off having treatment, suffering heavy medical financial burden and just hoping to make it through each day. Its funny isn’t it people expect as soon as treatment finishes you just become your old self again and move on, or even better, go off and climb Mount Everest or meditate in hills of India. Forget the fact that we live our lives at appointments with doctors, specialists and pathologists. Or the fact that we have to pass the tests for at least 5 years (in my case) before we are deemed clear, no this is not the normal life of people our age but it is for people surviving cancer.

[harker]

So Now What? It's Saturday morning and I'm two days into what may become a full scale dispute at work. I feel I'm being discriminated against. I haven't slept. I've had lots of coffee, too much in fact. My daughter is here this morning, she stayed overnight with us as she has a paper to finish for Uni by Monday and didn't want to spend time driving across town. More coffee, darling? Purr. So Now What? Well, I answered the question, but that's not what you meant. So Now What? I know this one too. I recognise it. So Now What? Every day is a So Now What day, isn't it. My most recent answer is 'living with cancer' is an OK job description, much better than 'fighting a battle with cancer'. So Now What? Living with cancer, that's what. If that means sitting here and responding openly to what someone else has expressed about our living, then that's what I'll do now. There's such beauty in your words, AmandaC, that I have to respond. I've rediscovered that I don't have to 'fight a battle with cancer' right now. I'm living with cancer and you have made my day. I thank you, AmandaC.

[Nikki_YAC]

hey AmandaC and harker, I total agree here.... once your diagnosed with cancer, you begin living the rest of your life with cancer. there is non of this so called 'cured' or 'life after cancer' or 'free from cancer'... Hell no! we live with cancer.... because it remains in our minds, through our ongoing appointments, through our daily conversations, through hearing about the latest news like a new cancer gene discovery, through the high profile celebrities that have cancer, through all those stupid 'how i cured my cancer books' that well meaning people recommend etc etc.

[#4]

Hi Amanda, I can honestly say I know what your going through. I was diaganosed with Thyroid cancer at the age of 32. I had the radiation treatment as well and developed complications while in hospital, had to have several scans as it had spread, ive had about 100 blood tests in 1 year and now im going to have another operation in Sept due to problems my Thyroid cancer caused. I can honestly also say I dont know how to get past all of this. I was diaganosed with severe depression and now on meds for that after trying to kill myself plus all on top of this I have 7 kids to look after which is tiring enough despite being lathargic everyday. I also find it really amusing how everyone thinks you can just step up and move on, I think its just not that easy to do, but im trying really hard to do it. In my mind nothing seems to work though. It is starting to get a bit easier as i get 1 day to myself a week now and i usually just sleep the day away, Take care and i hope you are well......... Sham

[lizyole]

I was 23 when I was first dnz with thyriod cancer, had surgury two lots on my neck,and followed with RAI then the following year I had another lump in my neck and it Hodkins lymphoma. I then had to have surgury on my neck then my abdomen cut from one side to the other so they could take samples from every where, RT followed from my chin to my belly button, nice,.So I thought so now what, And you know what follows that,years of check ups and blood test, and no one told you about the health problems that follow because your immune system is not working properly,, that was twenty years ago. Back to now two years ago I was dnz with cervical cancer, while they were doing tests they discovered my thyriod cancer had returned so more surgury one for each two months apart then some more RI. Another year or so of narsty infections now I am back to SO WHAT NOW

[#6]

Hi Lizyole, what can i say but OMG, you been through so much, I was actually crying reading your posting as i was also praying please dont this happen to me. I too had 2 surgeries on my neck. I have to strongly agree about the fact no one tells you anything, before my first operation i was told i would have the operation, come out, pop 1 pill per day and i would be fine, but it HASN'T been. I am having another operation in Sept because of other problems this has caused me, then im up for a 6-8 week recovery, thats gonna be a lifetime to me. My husband and i calculated that i've had about 80-100 blood tests in 12-13 months and im due for my cancer checkup in August. I was led to believe by doctors that this was only till i hit the 5 year mark but according to my specialist this is probably gonna be for the rest of my life like the medication is gonna be. People wonder why when you get something like this you suffer from depression. My life was great before all this crap started, it was full on, fun, exciting, full of adventure with my hubby and my 7 young kids, but now it is full of tests, medication, monitering levels,infections, colds, sleep, sleep and more sleep. No wonder my kids think that their mum is always grumpy and boring, I will finish up now, I am praying that you get get better quickly and i hope that everything goes okay for you, take care, Sham

[AmandaC]

Lizyole I to shed a tear or two reading your story, you have been through so much and you are still so young. I can only imagine how all that surgery has effected your self image, my husbnad has a scar from his ribs to his pelvis and he is soooo conscious of it. They really don't tell us everything when we go for treatment like the fact our immune systems are shot, the RAI can actually pool in other areas creating other problems, the whole parathyroid thing and calcium levels and no one is ever prepared for the mountains of medical stuff you go through on a daily basis. I have had blood test every few months for 3 years to get my levels right and they still are always out, depression is sorta part of the job description I think. Hopefully we can all work on so now what together.

[lizyole]

HI AmandaC and Sham thanks for the comments, funny you should say that about being self concious about my scars Amandac , I am actualy quite proud of them to a degree, as they did all these things to me and I am still here. They also tell a story, the story of my life even if it is not the life I planned for myself it is my life and I have learn to be gratful regardless. All the things that life throws at you will only make you a stronger and better person. I have a strong belive of alway looking for the good in a situation. I think it has helped me so much