Have been feling rather sorry for myself for the last couple of days. Shaved all the hair of Monday night and i have been out wearing wig or scarf very scary the first time. My application of make up has also suddenly got thicker.
I had 2nd fec yesterday and have been up with the steriod buzz since 3, had a couple of dvd’s to watch but i can’t really concentrate.
Saw the onc on Tuesday different doc with very inconsistenent messages, must admitt this put me into a downward spiral. I had always been told that the plan was chemo may shrink tumour to make conservative surgery possible, She told me irrespective of shrinkage i would be haing a mastectomy with total clearance. Aslo said the chemo could be 6 to 8 cycles rather that 4 to 6. To top all this of she could’t answer any of my questions.
I eamailed the brest care coordinator on Tuesday night who arranged for me to see my consultant onc yesterday afternoon after my chemo. Prompt service and he did help, but do the doctors not realise what effect inconsitent messages have on us.
My way of coping is to be as informed as possible and i don’t even have a grading or definitive type diagnosis as the path lab doesnt like to do this based on the core and will only use it if no surgery. So i will have to wait for surgery which is around Jan time.
Needless to say i have been feeling a bit sorry for myself and angry which my hubbie hasn’t been coping with this week. If i get upset his response is don’t speak to people and you wont get upset. I feel that although i need to remain positive and that i am a strong person i also need to be allowed to be pissed off and upset.
Sorry for the moan. This is such a great place where you feel you can sound off.
Lesley, I am so sorry you are feeling low… understandable though, when you get contraddicting information! did you ask the new onc why she had so different answers from the other? maybe there is a communication disconnect somewhere, it sounds like that. Unfortunately this isn’t an exact science, so different doctors may have different opinions: it may be interesting to investigate the difference further.
As for your hubby… guys sometimes go into denial… not speaking to people - to doctors even more so! - will only not get you the information you need to have to make informed decisions. You cannot afford to lay down and wait… there is a lot to learn on this, and it only makes you stronger. Upset is normal, being sad, being low and feeling angry is all normal - different phases that we all go through.
Sorry about my ealier moaning post. Combination of a couple of bad few days and no sleep hadn’t left me in the best of places. I have taken the day of work after chemo yesterday and have a lazy indulgent day, so i am now feeling a bit better. Of to pu ton my wig and collect the children from school.
I was really sorry to hear your post. I know just what you mean. There are times when it seems the people who should be caring for you just do not understand what effect their words have, and moreover do not really care.
If it’s any comfort, I had a lot of problems with the hospital who did my initial diagnosis and surgery (including calling me in for the results and after a 3-hour wait telling me they did not have them after all and sending me home again). In a nutshell, I insisted on changing hospitals and the difference has been dramatic even though the actual oncologist is the same person for both.
I know you say you have kept yourself informed and like you, the poor treatment I received in the first hospital also got me looking around and reading more for myself. Two books I have found invaluable are ‘Coping with Chemotherapy’ by Dr Terry Priestman, and ‘Living through Breast Cancer’ by Carolyn Kaelin. The latter is written by an American cancer surgeon who herself had breast cancer and is a great mixture of the authoritative and the personal.
I always write my questions down for the oncologist and they are often based on what I have read. Sometimes it is a good idea to take a good friend with you who will also prompt the doctor to answer you properly, and you can even ask to record your sessions on a littloe Dictaphone - why not?
I stay in the room until I have satisfied myself, regardless of how busy he is, how many phone calls or interruptions there are and whatever the pressure to shuffle me out of the door (they must hate me!). My view is that I am the patient and I am the person who matters most in all this.
Good luck, Lesley, I hope things improve for you. Keep having those relaxing indulgent days and make the most of the peace and quiet!
I get those buzzes too… u can’t lie down, when u get up u feel like lying back down, just can’t settle down!!! I have this for 4 days…drives me nutzo… My GP gave me sleeping tablets and so I cope during the day and then at night I take a tablet and settle down for at least 5 hours…
guys sometimes go into denial… not speaking to people - to doctors even more so! - will only not get you the information you need to have to make informed decisions. You cannot afford to lay down and wait… there is a lot to learn on this, and it only makes you stronger. Upset is normal, being sad, being low and feeling angry is all normal - different phases that we all go through.