'Life is uncharted territory. It reveals its story one moment at a time.'
- Leo F Buscaglia
Once again we have moved into uncharted territory with swelling of the right arm and upper body. The shortness of breath, and inability to pass urine, became a huge concern. Monday morning of last week when the Community nurse arrived to help with shower and dressing change, she indicated her concern, deciding to make a phone call to the palliative care team once the dressings were firmly in place. I felt relieved, due to my confidence in their ability to assess the situation and their wisdom in making appropriate decisions. Before the Community Nurse departed she used a portable ultrasound to check the bladder confirming it was not the culprit. No problems there it seemed. Back to the drawing board!
The Palliative Care nurse undertook a thorough examination before telephoning the Palliative Care doctor. In the meantime, I received a call from the co-ordinater at the Mater hospital. We discussed the current crisis, she took notes relaying the information to 'Dr Amazing' who indicated he would probably like to see me admitted to the hospital for observation and further assessment. Radiation was mentioned, although given my previous experience, it made me shudder. That was certainly not my preferred choice!
Given that 'Dr Amazing' is away this week, and knowing that I am so reliant on Haydn for personal care, including dressing changes, the Palliative Care doctor decided to try an 8mg injection of Dexmethsone immediately with 4mg tablets taken daily, in the hope it would reduce swelling to the area. The hope is that, with swelling reduced, I will breathe a little easier and feel more comfortable which obviously means passing urine regularly.
It is now one week later and I have been on the steroid [Dexmethsone] for almost a week. There has been some easing of symptoms. This feels like a difficult journey to undertake! It does appear that this dreadful disease which now appears to be a fungating tumour is spreading quickly, and aggressively, across the chest wall, causing swelling of glands and vessels. Not a pleasant sight or thought! My right arm is so swollen it is hard to believe the skin does not burst. The arm and hand are covered in tiny bubbles and we can only wonder what is in store? There are absolutely no clothes in my wardrobe that fit me and leaving the house has become somewhat distressing. This is the most incredible journey. I have discussed with Palliative Care my wish to be given whatever is necessary to ease my pain and ensure my comfort as much as possible.
Given that 'Dr Amazing' is away this week, and knowing that I am so reliant on Haydn for personal care, including dressing changes, the Palliative Care doctor decided to try an 8mg injection of Dexmethsone immediately with 4mg tablets taken daily, in the hope it would reduce swelling to the area. The hope is that, with swelling reduced, I will breathe a little easier and feel more comfortable which obviously means passing urine regularly.
It is now one week later and I have been on the steroid [Dexmethsone] for almost a week. There has been some easing of symptoms. This feels like a difficult journey to undertake! It does appear that this dreadful disease which now appears to be a fungating tumour is spreading quickly, and aggressively, across the chest wall, causing swelling of glands and vessels. Not a pleasant sight or thought! My right arm is so swollen it is hard to believe the skin does not burst. The arm and hand are covered in tiny bubbles and we can only wonder what is in store? There are absolutely no clothes in my wardrobe that fit me and leaving the house has become somewhat distressing. This is the most incredible journey. I have discussed with Palliative Care my wish to be given whatever is necessary to ease my pain and ensure my comfort as much as possible.
'We seem to gain wisdom more readily through our failures than through our successes. We always think of failure as the antithesis of success, but it isn't. Success often lies just the other side of failure.'
- Leo F Buscaglia
14 comments:
I find your state of mind remarkable Cheryl. The Buscaglia quote you posted takes a great deal of courage to have faith in at this point for you, yet you still post it and I know you truly believe it. We are all praying for a miracle Cheryl and yet we already have one...you.
Chez, You are so brave. I wish you a safe journey. Susan in Vermont USA
Chez sure glad they new what to do to help you pass urine,sure is a rough tough journey my friend,wish a magic wand could help you as i so hate to hear you are in such pain.
"We are all angels with one wing,the only way to fly therefore is to embrace one another."
Chez also know this month is hard on you with Jeremy bday and Angel date so near.
Love always dear friend,Kaz PITA.XO♥♥
Hugs to you Cheryl with my most compassionate thoughts my friend! I so hate this thing called Cancer and I hate the effects it has on it's host!!
I cry as I read your post knowing some about some of the awful symptoms you are having to live with. Too familiar.
All I can say is I love you and I hope that relief is found and that comfort is surrounding you in every way!♥♥XoXo
Hugs to you Cheryl with my most compassionate thoughts my friend! I so hate this thing called Cancer and I hate the effects it has on it's host!!
I cry as I read your post knowing some about some of the awful symptoms you are having to live with. Too familiar.
All I can say is I love you and I hope that relief is found and that comfort is surrounding you in every way!♥♥XoXo
So the lack of urine was due to the fluid being retained around your chest and arm?
I am so sorry that you must deal with this monster visibly marching across your chest. It is so unfair. I do understand your reluctance to do radiation again but if Dr. Amazing thinks it would slow down or even better make the monster retreat, maybe you should give it a try.
I love you Cheryl, and I am praying for you everyday.
Cheryl, you are in my thoughts and prayers always Xx
So sad to hear the monster is marching on. I dearly hope Dr Amazing can provide more relief. You are so brave on this awful journey.
Chez, seeing the highs and lows of the human existence here today... having seen the grusome image of your body, but knowing you are also taking time to appreciate the precious wonders of nature in your garden... I am amazed by you, as always. What you go through, but your attitude and observance of the world and life.... you may have lost many physical things but your spirit is amazing. I can't think of anyone I would trust more to preserve their soul during such trials.
Love and prayers to you xoxox Starry
I'm struck by your calmness. You are amazing, my friend. I think of you daily and wonder how you're doing. Thanks for keeping us updated on things. My best.
Lots of love and thinking of you.
Chez I don't get how you do it.. still you are so positive... I'm happy that you are but I hate seeing you in pain... you are in my thoughts and prayers..
Dear cheryl, your beautiful writing and honesty about your experience with this terrible disease has deeply moved and inspired me. your words and your strength and spirit lift me as i walk a similar path. Thank you. May you have peace and be free of pain and be surrounded by love... There is wonder and amazement and beauty that still shines in every precious moment we have on this earth.
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