julieg

[julieg]

this is the first time I have created a blog - not sure if I am doing it right. I have just been diagnosed with what I understand to be quite an agressive cancer & difficult to treat. I swing between not believing it & then sobbing with the helplessness I feel. My poor husband is devastated, I will tell my girls this weekend but will try not to tell them how bad it is. I will meet with a chemotherapist tomorrow, my husband & I will meet with our GP next week & I have arranged counselling for both of us next week. We are floundering, I feel I have a stalker in my midst who will get me no matter what I do.

[Sailor]

Hi Julieg Yes it is devastating. Don't be afraid to cry, and when you have finished crying you are allowed to cry some more. Your husband and girls are allowed to cry as well. It is really good that you have arranged some counselling, too many of us take that step far too late. Also remember that you are an individual, you have an aggressive difficult to treat cancer, but all the information on that cancer is based on groups of people and averages and statistics. That doesn't say that that will be your journey. There is a great story by the writer Stephen J Gould about his personal diagnosis of mesothelioma of the stomach nearly thirty years ago. That is a rare and aggressive cancer with a median life expectancy of eight months. He lived for twenty years. It is called, 'The median is not the Message' and can be accessed from the internet at http://www.phoenix5.org/articles/GouldMessage.html. Good luck with the visit to the oncologist, the GP and the journey ahead. Best wishes Sailor “Thought is the wind, knowledge the sail, and mankind the vessel.” August Hare

[julieg]

thankyou Sailor - I am so glad I have discovered this online forum - I know it will be of help throughout my journey.

[Sailor]

Hi Julieg When I was first diagnosed an elderly friend who had been a senior nurse in a major hospital came up to me, gave me a hug and told me that I had a prefect right to be angry. I didn't need to be then, but just being given permission to be angry made a lot of difference. A few months later I went to the end of year dinner that a group of friends that was a regular event. We were a pretty crazy group who didn't spare any feelings - we had all been mature age students together. One of the female members came up gave me a big hug and asked 'how are all your dangly bits' - she gave me permission to talk about the side effects of treatment. I told another friend about the perils of being irradiated with a full bladder when the machine broke down! The blighter circulated the email to all our mutual friends, but he gave me permission to joke about things that were pretty personal. So I was fortunate that I was given permission to be angry, to talk about personal matters, to use humour to deal with issues. Others gave me permission to cry and at times to lament. Recently one of my friends when he heard the news of my twin grandchildren arriving came up to me and said quietly " we have at times wept with you and now we rejoice with you". So don't be afraid to weep, to be angry, to lament, but also don't be afraid to laugh about the ridiculous things you will encounter, to talk with anybody about matters and to rejoice at the joys of life. It is now very precious. Regards Sailor I think the sea has thrown itself upon me and been answered, at least in part, and I believe I am a little changed - not essentially, but changed and transubstantiated as anyone is who has asked a question and been answered. Hart Crane

[julieg]

HI everyone, I am about to complete my chemo tomorrow! (3 months worth)so far have tolerated it well. What I am concerned about now is that I will be having pelvic radiotherapy for 6 weeks & am quite scared of the side effects. Is there anyone out there who has had this & how did you go? Did it take you long to feel better? I will be back at work & expect to feel quite tired. I have listened & read about it but would like to hear from someone who has been there & done that. J

[Sailor]

Hi Julieg Congratulations on making it so far. I had four weeks of pelvic radiation then that was followed by radiation delivered internally. A lot of us blokes have six weeks of pelvic radiation. It is a different part of the pelvis being irradiated so the side effects may well be different - I just don't know. What side effects - I didn't get much sunburn but many people do. Because of where we are being irradiated sunburn to the backside is a problem so they suggested we have salt baths - they helped. Bowel side effects - diarrhoea, but this is fairly readily controlled. I didn't have any long term effects from that first lot. Fatigue - I would have to stop each afternoon and have a nap for half an hour to an hour and then I would be OK, but if I tried not to then it became to much. I used to describe it as hitting a wall, a friend described it as your head in fog and your feet in treacle. However, I didn't miss any work, managed to keep going everyday with it. Can't say that your side effect will be at all similar as I didn't have chemotherapy like yours beforehand. Hope this helps and good luck with it. Sailor I think the sea has thrown itself upon me and been answered, at least in part, and I believe I am a little changed - not essentially, but changed and transubstantiated as anyone is who has asked a question and been answered. Hart Crane