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My wife has a glioblastoma in her thalamus which is inoperable. It’s happened fast. Diagnosis from biopsy last July with poor prognosis. It’s been very difficult however she is unbelievably strong and upbeat. I’m not handling this with grace and strength she is. It’s a terrible circumstance out of the blue with little chance of a cure. I’m looking to learn more about what we can expect and it’s hard not thinking about the damn abyss we’re staring down.
My name is Roselee and after a five year battle I'm only now finding that I am comfortable talking about my cancer to other people who know exactly what I'm going through. Friends and family can show empathy but they really have no idea what its like, which is why I thought I would put out feelers for some kind of group where I can feel like everyone else. I'm the "out there" patient that my drs use as a Case Study, and I have the trainee drs hovering whenever I go back into hospital. Nothing that should work, works. Outside of cancer I work in the city (which can be a struggle each day just commuting in) but my employers are simply the best. They have supported me over the last 5 years with a "Whatever i need they will help with" attitude. I couldn't still be working 4 days without their friendship and support. I live with my partner and his two small boys (challenging in itself). I have 2 nephews that I love to death and 8 God children that I adore each and every day. Other than that my life is pretty quiet.
All have great days!
My name is John Murphy and I am on the wrong side of 67 and trying to enjoy retirement and I am a cancer survivor.
In September 2009 I was diagnosed with a Squamous Cell Carcinoma right base of tongue. I went through the 33 radiotherapy sessins and 3 Cysplatin chemo sessions. After 8½ years I can now eat fairly normally.
In September 2015 my wife was diagnosed with breast cancer and has survived her treatment very well. So I have seen both sides of the cancer journey.
My Cancer Council involvement includes the Newcastle Lake Macquarie Relay for Life Committee and as a volunteer driver for the Transport to Treatment service. The volunteer family is amazing and I enjoy working with them.
I look forward to, one day, seeing a cure for this insidious disease.
Like you I had squamous cell carcinoma but of the right side tonsil, stage 2. The treatment they gave me was the same as yours Cisplatin 3 rounds and 33 radiation sessions at the same time.
Prior to this treatment I had lymphoma nodes on the same side of neck removed, one was infected. The actual tonsil was removed by a de Vinci robot, it took 1hour and 5 minutes to do.
The funny thing is, in my job at the time I use to work on robots in the food process packaging industry. So before going under sedation I asked the robot to go easy on me otherwise pay back if I did a return service job on him.😂
The after effects of it all has been a burden, my biggest gripe is the burning tongue syndrome, which comes and goes. Will this eventually disappear? Luckily I produce enough saliva in the day to get food down my throat. Also I get tightness around the throat, I do lots of lymph neck massaging. Any tips you got to help me through this nightmare would be much appreciated.
Even though I don't personally know you - you are my brother nonetheless and I share your emotional distress trying to cope with mine after receiving a dire diagnosis. What resonated with me in your post was characterising you wife as upbeat which seems to confirm my long held belief that females are indeed the stronger sex particularly psychologically.
A close friend passed several years ago having the same diagnosis as your lady wife in spite of the fact he was both mentally and pysically strong and under the very best of treatment and care.
Know that in time you will overcome your pain as 'this too shall pass'
I have oesophageal cancer stage 4 , been through one round of chemo and radiotherapy and I am about to embark on the second round while still suffering the side effects of round 1.
The chemotherapy is the one that really gives issues , I do not really want to do that again but my family really wants me to . Chemotherapy for me requires blood transfusions 2 days after everytime because of the havoc it creates for me , but I have a family that loves me so here I go again.
The worst thing I find is the lack of support offered to me when I get home ( 160 kms from Adelaide), everything that I used to get to help with radiation burns , sore throat medicine, anti nausea drugs , food supplements that were free and available at the RAH cost more than I can afford when home.
I really do not know what I may be looking for in this forum but it is a bit hard to discuss difficult issues with my partner and my daughter and it makes me feel very alone
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