Just starting the journey

[dragonwyk]

We are just starting our journey and I know that it will not be an easy one. I am the type of person who likes to know what to expect and to have contingencies in place but this thing just doesn't seem to allow it and 6 weeks after the diagnosis I am struggling. My husband is really positive that he will beat it (stage 3 bowel cancer) but I have no idea what to expect in my role as his carer and how best to help him. The doctors are very non-commital at this point but maybe after his surgery in late April we will know more. Currently his is having radiation and chemo. Any advice would be very much appreciated. Thanks

[Oldman]

Hello and sorry for the delay in getting a reply to you.I have just had my large bowel, rectum and anus removed, I now have a colostomy bag for the rest of my life.But the news is that I have recovered from a T3 tumor while saying that the past 5months where tough on all the family, the thing I found is that there is a lot of support out there not only through this web site but also through the cancer council and treatment clinic.If your husband would like to send me a private email at any time to talk to some one who knows what he is going through please feel free to do so.I'm here to help.oldman (Kevin)

[dragonwyk]

Thanks Kevin, it is good to know that there is someone who can talk to my husband from a similar situation.  I know he is worried but he doesn't share his thoughts too much with me at this stage and I can understand that in a way.  I'm glad that you have made it through successfully - it gives me more confidence that we will too. You have helped me feel more positive.  Thanks. Dragonwyk (Christine)  

[mikey]

Hi Christine, welcome to the forums. There's lots of tests to be done at the early stages of the journey and I'd say the doctors are being non-committal because they want to wait for more results from these tests before giving you solid advice. I know that doesn't make it any easier for you but perhaps it helps explain their actions.I though I should let you know, there's recently been an update to the carers section of this website. It now contains lots of info sheets to help your role as a carer.

[dragonwyk]

Thanks Mikey,  Tony is now half way through the radiation and so far no side effects (saw the doctor today and he is really pleased with progress to date).  The bleeding has stopped, he has put on 1 kg in the past week and bowel habits are back to normal.  Last night he managed a full nights sleep for the first time in 6 months!!!!!! We are really hopeful that this is a good thing!  Also for the first time there were no dramas with the chemo this week - the past two have involved lots of fainting (him not me) and doctors, ECG's etc.  The chemo is via 24 x 7 portocath thingy (I'm just sooo good at this medical speak). This time everything was laid out ready for the drama and it didn't happen - probably because I stayed out in the waiting area for a change. Christine  

[howells]

We are also just starting our journey, I feel the same way about so many things you wrote - I also dont know what to expect as my role as a carer. My wonderful, wonderful partner and I had the perfect life, we were just so happy with the balance of us, work and friends/family we had created to live in. The doctor at the stage are really blunt about how very real it is that Robs time has been cut short no matter what treatment he has. I still am in the nightmare of not thinking its true. Rob is focusing on saving his life by diet. Its become a strict routine of a new diet in our house. He is classed stage 3 melanoma. I will do anything it takes to make him feel better.

[dragonwyk]

Hi Howells's, I am finding that 7 weeks after the diagnosis it is still surreal. I find that it is rather like being on a ferris wheel some days I am at the bottom and others on top. It seems that there is no exact map to follow on this except to maintain a positive focus on each day. My carer role so far is one of just being there for support for Tony, acting as taxi driver to and from radiation and chemo and being his nutritionist. I am a firm believer that diet can go an extraordinarily long way in helping us recover from all sorts of things. We have eaten organic foods for some years now and do not buy pre-packaged or pre-prepared foods, so my focus is on making sure Tony gets the right mix of protein, fibre, antioxidants, vitamins etc. etc. Take care of yourself and make sure you get adequate rest and time out - this is just so important if we carers are to continue to give strength and love to our partners. Warmest regards to you and Rob. Christine

[howells]

Hi Christine, its the middle of the night and i just cant sleep-been this way since we found out on 29/02/08 im so gald its a leap year and that date only comes every 4 years - but your message just made my mind relax slightly. I am being very supportive, rob is madly researching and doing well, trying always to focus on being positive. I am off work, and we are spending everyday together - time off i had been longing so badly , I work up to 70 hours week . Tomorrow he goes for the first operation, removing lymph nodes and multiple toumours, he wil be there 3 weeks. Thank you for your kind words of encouragement  you helped me feel better, you stay positive too take care . Regards Tara howells   

[dragonwyk]

Good luck and all my warmest wishes to you and Rob.  Sleep can be elusive in the early weeks but I found that eventually tiredness overcame and I began sleeping again.  Try and focus on just the present - don't think about what tomorrow may bring - I find it easier to manage that way.  Take care, Christine

[Kaza]

I am travelling on the journey.  I was diagnosed October 2006 with bowel cancer.  I had two tumours removed, 38 lympth nodes (5 with cancer), one ovary and my gall bladder. I was on chemo for 6 months.  I had a blood test done to see if I carry the faulty gene for HNPCC.  I do.  This week my kids went to see their results from their blood tests and they were told that they are both carriers. I was really hoping that they both would be clear, but I feel that it is a good thing that they know and that they can prevent it happening to them what happened to me. I find this forum really helps to discuss how you feel but I also attend a bowel cancer support group fortnightly.  This group is for carers as well as the person with the cancer. I really enjoy it and it helps to express my worries. Kaza