Our greatest weakness lies in giving up. The most certain way to succeed is always try just one more time
Thomas A Edison
I was, elated twhen my Ryle tube was finally removed. The stitches inside mouth were intact. I was asked to go on soft diet. Egg half fry, chapati soaked in daal, vegetable soup with soft boiled vegetables, coconut water, milk shake, all seemed like a big treat to me.
I was warned and counseled by Doctor Dhar and Dr. Prabhune that surgery was the easier part of treatment, radiation is no piece of cake, be prepared for the vagaries of radiation.
Dr. Mansi Munshi Girme Radiation Oncologist and Cancer genetic specialist an amazing doctor, with calm disposition, firm but kind human being was my doctor for radiology therapy. She explained what to expect. 31 st July 2024 started my radiation sessions.
I had been told that in last few weeks getting Ryle tube would be better idea, but I had promised myself I will eat my food by mouth. Dr. Mansi kept on telling me grind the food abd eat, you are determined so I know you can do it, you can do without Ryle tube. She was great source of inspiration to me.
I knew after two weeks of radiation when mucositis (blisters) start appearing then things will get tough so "Make hay when sun shines". I went to a, day trip to Khadakwasla with my husband, son, DIL and grandson. Reviving golden memories in IAT, eating my food while enjoying the scenic beauty of lake. Family enjoyed their lunch. I had great time running around (giving scare to my family) with my grandson. We made memories to cherish and enjoy during tough days I was to face.
5th session got canceled due to technical reason. Took this opportunity and went for a long drive to Mahsoba temple (almost 15km from our residence).
The tickling sensation in tongue specially on right side (surgery side) started after 7th session and on 15th August on our Independence day my blisters thought of liberating themselves with vengeance and the underside of my right side tongue right inner cheek became full of painful mucositis. Saying they hurt will be understatement. I had to eat my food by grinding it to paste with very little salt. Egg half boil not a spec of solid I could tolerate, it was excruciatingly painful. That was starting.
The mouth wash, spray, lotions were prescribed to keep my blisters free of fungal infection and for numbing my mouth so that I can take my meals. Thank you Dr. Mansi for having faith on my resolution and helping me out to keep it.
As the time passed with each session of radiation new blisters, extreme heat enamating in mouth (which meant more inflamation), Mettalic taste and saliva becoming like thick mucous kept on increasing.
My son could not see me suffering and would tell me get Ryle tube ma, so did the resident doctor, because they feared I may not eat due to pain and in turn lose weight. Weight loss is detrimental for radiation.
But I refused, remodeled my diet to high protein (as per doctor high protein diet is required for recovery). Eggs, nut-oats-fox nut powder for milk shake, Khichdi with mix of pulses, rice and broken wheat (after, all carbs are also required) and butter milk.
It was not certainly Piece of Cake, things were not easy, sleepless nights due to dryness in throat, heat in mouth, pain and hurting mucositis. I used to tell myself in night I am taking a break from radiation, then in morning I used to ask myself "you got defeated huh" and this used to get over my dread of eating (rather drinking) my meals, and I used to get ready for my radiation session.
30 sessions done and I was told your radiation finished, but only to be told no three booster doses are also due. I must accept that I first refused, emphatically saying No. But just few minutes later asked OK when do I come. For me it was like " Q Sera sera what will be will be " . And finished my 33 sessions of radiation without a break. Without Ryle tube getting put for feeding.
It takes great determination and resilience, but what determination and resilience would do without family support. Whenever my morale would be down my I would get message from my daughter, daughter in law, son in law encouraging me reminding me of my inner strength. My husband and son(who stayed with us till my radiation finished his wife and son in Chicago) would not show sympathy but would tell me " You are strong, it is matter of time and you will come out winner ". In particular I would like to share some messages by my Son in law
"I know the struggles, pain and challenges that you have gone through. The surgery marks and the face integrity is very much there. Superb fighting spirit and strength from you - Truly inspirational and very few people I know that are capable of it. I couldn't have been 10% of what you've been able to manage. Stellar! Exceptional! Keep going strong and we'll all be through this soon. Many hugs and wishes for you."
" Yes of course... Each swallow and tongue or mouth movement must be full of pain. Plus the thought of much more radiation and further inflammation... Just try to block the thinking of the future and just survive the today. One step at a time...
Once you're through, I'm buying you the best purse or holiday that you have always wanted. Just few more weeks of fighting on...
I'm bribing you to stay positive."
From my DAUGHTER'S MIL
" A Fighter spirit indeed!
An inspiration for all.
Lots of good wishes for tomorrow's radiation session. This too shall pass. Praying for your speedy recovery. 🙌🙌🙌🤗🤗🤗"
Mouth blisters are major side effects of radiation but skin getting blacked, blisters and ulcers developing on neck are also side effect of radiation. Applying Aleo vera gel, no soap, no scrubbing is the only solution to it.
Outer blisters and burnt skin takes two or three weeks maximum, provided due care should be taken and doctors order are followed to T.
I have blisters on the tongue so while talking tongue hits teeth and blisters get hurt causing immense pain. So I communicate by writting, remaining in silent mode. No cribbing wife so hubby should have some reason to be happy in these difficult days🤣.
My radiation therapy finished on 17th September, as per doctor it may take another month from today (7th October). Things are looking up. Most mucositis gone except above the tongue and near throat.
Mucositis takes almost two months to get cured.
Dr. Mansi your words "You are healing better than many patients half your age" gave me courage to deal what next few weeks bring on my way.
Thank you Dr. Mansi, my family and friends for encouraging me, supporting me and having faith on my strength and determination.
One message from my SIL
"..... I think you outdid all of our expectations with your immense bravery, strength and positivity. Superb. Bravo. Take a bow!!!"
Saurabh you my husband and all my children, have such unflinching faith on me, I thank God and you all for that.
I am a fighter. Only a small battle has been won. When tests are done and I am declared cancer free a war will be won. With Almighty blessings hope to keep on winning these wars every year.
