A week ago we were 2 healthy people,with a lovely 20yo son and this afternoon, after a barrage of tests, we have an appointment to receive a cancer diagnosis.
My husband went into casualty with a piece of food stuck in his throat, they biopsied a lesion, told us there were irregular cells in the oesophagus .. Bit scary
Then came the PET scan which showed spots on bones and in his liver .. an emergency MRI because they thought his spinal cord was about to be compressed - at this point, Thursday night the registrar told us that there was 'almost no' chance that this wasn't a Stage 4, incurable, inoperable cancer ...
So after a weekend of no sleep, trying to be normal and failing we wait until 5.30 today to be told the final verdict - although we've already been told.
The weird thing is I can't foresee what to do at that point? Do we just come home and have dinner? Do we all run around screaming in the street? I don't know how I'll get through today, let alone the future.
I'm terrified about money - we have no savings, super or life insurance. We live a great life, both as freelancers, but (and now I'm really glad about this) have travelled and raised our son and lived to the fullest without too much planning or saving.
The person beside me appears perfectly healthy with no symptoms, yet we've been told that he will have a matter of months to live.
I'm terrified about money and paying the rent, terrified about how to live each moment, terrified about pain and suffering ....
This is a bit of a ramble I know, but I'm glad I found this board just to write how I feel at the moment.
What a shock to you all!! I know it is no comfort to you but what you are going through now is pretty much the worse part of a cancer experience. Once you know what you are dealing with we all seem to cope better. There is a fair bit of help out there and the cancer council is a great 1st port of call.
Ramble away all that you need to, we all understand what it is like.
Hi Kristin, I second what Jules says, in some ways the process of getting diagnosed is the worst part-at least once you have a concrete diagnosis and plan of action you know what you're dealing with, and what you're not dealing with. Please feel free to vent here, ask questions and generally just 'be', with other people who have been through the same process. Sending big hugs for you and your family, Emily
Thanks so much - I'm very glad I found this space. I'm definitely a sharer who needs people to talk to. So they rang this morning and put the appointment off for a week. The surgeon who ordered the tests only consults on Mondays, the biopsy results aren't back. So another week of waiting, to be told what we've already been told!
You're right though, I wish I could just get on with whatever it is .. We've decided to just try to have a normal
Week (haha), go to work etc.
Son and husband have managed to do just that by having a row over dinner - I guess normality is normality eh?
Thanks so much xxxx
Kristin ... so glad you have had some normality back in your life! Bet you never thought an argument would be so appreciated?? Until all tests are back no one will know what is needing to be dealt with. Try and hang onto that and sometimes miracles do occur. Not wishing to offer up false hope, but, it is important to hang onto hope also.
Hello , I just went through a similar process although not as bad. A lump in the throat , scans etc and the waiting. Then the diagnosis - stage 4 too. I am typing this whilst looking at a tube in my stomach and radiotherapy/chemo starts Monday. My oncologist told me that Stage 4 in the head or neck is treatable but the chemo required is severe. From when I first got told by the GP to the specialist the time has been like a dream. I face one day at a time but as you said life still continues around you. All I can say to you from what I have learned about cancer is where there is life there is hope and don't give up. I wish you all the best.
Hows it all going for you? I remember my peg, which I didn't end up using during treatment. Mine was used prior to treatment as my stage 4 tumour blocked my throat. Chemo is doable ... keep in touch with your cancer nurse and oncologist and if you get too nauseous they can give you something to help with that.
It takes a while. Things moved pretty quickly for me from diagnosis by GP to confirmation by specialist ( about a week ) but when I was referred to Peter Mac things slowed down. One week waiting for an appointment which lasted barely 10 minutes . Reality set in then. The public system at the pointy end is good but you can wait. Takes about a month to start treatment from first appointment at the hospital that does the treatment. Often there is waiting and then the phones starts ringing with your appointments - often in 2 days time. You get used to it. I was urged to use the " free time " to prepare. I did a will , talked to people and stocked up . I went through the classic symptoms of shock/denial/despair etc. Lots of tears and lots of thinking about life/mortality etc. My psychologist drew me a picture of a road with the destination LIFE and houses on the side that you must pass like chemo etc. Basically stay on the road and the houses are only temporary and you reach the end which is life. Focus is the key. Think of things that matter to you which represent life - in my case family. You must believe that all this will pass.
Initial diagnosis confirmed - Oesophagal, Stage 4, squamous. Starting chemo but not radiation in 2 weeks. All the spots are quite small at the moment so I think the idea is to save the radiation until they need it.
Chemo sounds OK to be honest - he said most people cope pretty well with minimal nausea, 1 day on a drip then 3 weeks tablets - repeat for 3-5 months!
First lesson learnt. Don't make plans, just go along day to day. I guess all depends now on whether the blasted thing responds to the chemo or not ... Paul I hope you're doing OK?
One good thing - we are lucky to be in a brand spanking new integrated centre, Life House at RPA in Sydney. Everything is under the same roof and its really a lovely building and environmet (for a hospital). We're public patients and so far its all just gone through on bulk billing .. Thank heavens we never made that move to America!!!!!
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.