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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
I hear you and empathise and will give as much support as I'm capable. I have completed my first round of Radiotherapy about a week or so ago and thus far have not experienced any physical side effects and am focussing of improving and uplifting the mental ones.
I have done a lot, perphaps too much, searching for tools than can aid achieving mental stability which seem to point to what is termed Mindfulness and living in the present moment.
You need to have internet access and headphones to access the numerous Youtube links which give guided meditation which I assume that you do given the post you have made.
As mentioned, the core message of doing Mindfulness meditation is to realise you can only live the present moment - the now if you will and although thinking of past and future events will undoubtably emerge during the medtation phase, one is urged to acknowledge observe them and let them pass.
The following are a couple of links to help get you started if you so wish having a duration of about 10 minutes and essentially recommended to daily -
I also would caution you there are a lot of disingenuous offerings and BS on the internet that are only interested in extracting money from you.
I sincerely hope you find my advice helpful and wish you the very best for you and your family in coping with our predicament.
Hi again Mercury35
With regard to your comment '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'
Not being aware of what kind of support is provided by RAH it may help if you or your loved ones contact them at the following link and outline your financial problems in purchasing the appropriate medicine, anti-nausea drugs and food supplements. Perhaps RAH could post them to you or advise what bureaucratic assistance is available to offset the cost?
Like you I was diagnosed with squamous cell cancer T4, n1, mo on my tonsil and round base.. about 6 mm tumour. I have had 33 radiation treatments and 7. Hemp low dose cisplatin, treatment started nov 15 2018 until January 15the. I’m now 5 weeks post treatment.
its been rough with the side effects, 40 pound weather loss, a pulmonary e,bolism ( PE) that nearly killed me, pneumonia, sepsis caused. Y sepsis enters bacteria, dehydration, and a small brush with gabapentin withdrawal symptoms.
all were Er. Visits...it seems like I get sick at nigght and then go home at 3 am after they figure out it the new challenge.
So much to learn that is new ....
im 5 weeks post treatment now and the mouth sores are better, I’m swallowing better. I’m starting to eat more... consuming more calories is mak8mg me healthier.. so even though I have no sense of taste yet.. I forced myself to eat this bland texture stuff called food. People don’t understand how easy hunger and taste make it to eat more than a bite. I have to force myself to eat.
my low point was 7to 8 weeks ago... I had a huge amount to phlegm ... I had trouble breathing, swallowing , and in time ( boy was I impatient ) is eventually became better. Swallowing pains was at it zenith then,
but it as my oncolog team coached me.... be patient, follow the course and it gets better.
im now cancer free... so I’m delighted.
ill relate my experience, I know how hard this process is even with the best of support. My wife and daughters have been there helping me at each step. I had a stay in the ICU for a couple of weeks with the PE,
dur8ng that time my precious wife of 31 years, slept in a chair each night , so as to not miss the doctor and nurse update they gave me ( but I was on strong drugs and would mess up what they told me....
i love her even more than our wedddibg day... such commitment and devotion, my daughter is a SLP speech pathologist and has been amazing .. there at the hospital dcod8mg what we are be8m* told and talking “ medical” with the docs and nurses and therapists... helping me navigate the system. Overall such support plus friend dropping by with pre cooked meals ( not for me as I’ve been eating liquids like ensure and boost to get my calories and. Ow healthy 1000 calorie shakes every day.
if you are just stat8mg the process... add weight before treatment, line up your support team. Cuz it’s glimg to be quite a ride but you can make it with patience.
on I’m 63 and live in San Diego us...
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