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Please introduce yourself

Katekat — Wed, 28 Mar 2018 22:45:19 GMT

Welcome to the Cancer Council Online Community!

These forums are a safe place for anyone affected by cancer to seek information and support, as well as to tell your stories and share your experiences with others.

We'd also love to get to know you. Reply to this thread to let us know who you are, what you might be looking for in this community, your hobbies, your pets, anything at all

TIP: When you select reply, make sure you UNTICK "Email me when someone replies", which you will see on the reply screen (to the right on desktops and below on mobile devices). We don't want you getting spammed if people post in here

We look forward to hearing from you!

Re: Please introduce yourself

LHilliker — Thu, 29 Mar 2018 00:43:33 GMT

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.

Re: Please introduce yourself

Roselee — Mon, 23 Apr 2018 05:48:55 GMT

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!

Roselee

Re: Please introduce yourself

JohnM — Mon, 23 Apr 2018 06:05:00 GMT

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.

Hi John, my name is Boony just turned 57, also a cancer survivor.

Boony — Thu, 01 Nov 2018 05:05:57 GMT

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.

Re: Please introduce yourself

tonygad — Wed, 23 Jan 2019 07:03:26 GMT

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'

Re: Please introduce yourself

mercury35 — Mon, 18 Feb 2019 11:58:44 GMT

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

Re: Please introduce yourself

tonygad — Mon, 18 Feb 2019 22:37:37 GMT

Hi @mercury35

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 -

https://www.youtube.com/watch?v=6p_yaNFSYao&t=101s

https://blog.mindvalley.com/10-minute-guided-meditation/?utm_source=google

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.

Best

Tony

Re: Please introduce yourself

tonygad — Tue, 19 Feb 2019 04:04:49 GMT

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?

https://www.rah.sa.gov.au/contact/contact-information

Re: Please introduce yourself

CraigJ — Tue, 05 Mar 2019 14:33:23 GMT

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...

craig

Re: Hi John, my name is Boony just turned 57, also a cancer survivor.

JohnM — Tue, 05 Mar 2019 21:03:31 GMT

Well done Boony on reaching the cancer-free milestone. It can be a long process. The challenges that face us in adapting to the "new normal" really keep us on our toes.

I have always considered that I have been extremely fortunate in my journey in that I had no real medical type complications during the time. I genuinely feel for anyone that has had serious complications on top of the general recovery. Radiation was very uncomfortable but incident-free, chemo made me sick, particularly the last one - spewed for a week then spent the weekend on a drip. Relearning to eat was a challenge and took a number of years before I was close to the situation pre-cancer. Suffered hearing loss due to the Cisplatin and now wear hearing aids. I still get tired easily but am trying to exercise more.

With regard to tips, keep up with the lympho massage, it needs all the help it can get. Work hard on swallowing exercises which will aid your eating - Speech Pathologist is good to get on to for this. I always have a drink when I eat and plenty of sauces and gravy and a lot of mashed potato with meals. Rare steak because it stays juicier longer and is easier to eat for me.

Keep on working hard and look after your support team - they deserve to be immortalised in gold. I had my wife helping me on a daily basis and other family helped with shopping and transport ad other things. I had the opportunity a few years ago to return the help to my wife as she recovered from breast cancer and surgery.

Good luck

John

Re: Please introduce yourself

Marg3 — Thu, 19 Sep 2019 22:01:27 GMT

Hi ,

My husband had a mole removed in February, 2017 and was told that, despite the fact that it was cancer, he was one of the 'lucky ones' because he would be monitored from then on. No monitoring took place (was that our fault or someone else's?) and in September he was diagnosed with stage 4 Melanoma with tumors in his lungs, liver and brain. Then began 9 months of hell; inhibitors that gave him jaundice ,immunotherapy that didn't work, more inhibitors, more immunotherapy and then his death in July 2018. Please don't misunderstand me - I'm not looking to blame anyone for the fact that his treatment didn't work. it was a miracle that they kept him alive for nine months considering his condition. But I do question the lack of information and monitoring after the initial mole removal. I constantly beat myself up - 'if only we'd ...'

But we assumed it would be initiated by - who knows? his surgeon, whoever held his data...?

I just hope that want happened to us can be prevented for others with better protocols.

It won't bring back my amazing husband who's absence is an ache I live with every day but my thoughts here might get someone thinking...

Re: Please introduce yourself

DaveT — Tue, 01 Oct 2019 05:32:17 GMT

Hi,

I'm David, and I was diagnosed with stage 3b Hodgkin Lymphoma in June this year, and currently am in my third cycle of chemo. Apologies for the long post, I am a bit of a story teller....

I consider myself to be extremely fortunate, which may seem strange after a cancer diagnosis, but I have many things to be positive about.

Firstly, Hodgkin Lymphoma while both rare and malignant, is generally well understood and known to respond well to the established treatment regime (ABVD chemo). It also responds very well to newer immunotherapy treatments.

Secondly, I am extremely lucky to be married to a senior Radiation Therapist with 25 years of experience, although she is not happy about being on the carer side of cancer treatment rather than on the treating professional side! This means that we know a lot of the people in the local cancer care centre personally, and while I don't expect any special treatment, it is reassuring to be dealing with people who know you.

Thirdly, my treating Hematologist is held in very high regard by all who have dealt with him, he calls a spade a spade, and is approachable, thorough and caring. I am able to talk with him frankly and comfortably, and be my own advocate without upsetting anyone.

Finally, I appear to be coping with chemo reasonably well, no nausea or vomiting, minimal fatigue, no digestive issues, and generally ok most of the time. I am able to exercise and do so on as regular a basis as I can (this is really important to me as a part of my treatment).

However, I do get the chemo fog quite noticeably (I spent ten minutes walking around the house looking for my mobile phone, all the while talking to my mother on it...), and it appears my bone marrow is copping a hiding. I have been neutropenic and anaemic, and have had to have blood infusions and inject myself with courses of GCSF (stimulates the production of base white blood cells) to deal with this.

Whilst I am something of an optimist, I am concerned about my emotional state, specifically in relation to the effects of the treatment drugs.

Somewhat unusually, I haven't felt a lot of the negative emotions that a cancer diagnosis normally brings, mostly due to the factors detailed above. I have lost my scalp and facial hair, but this doesn't bother me as I was fairly bald to start with, although I miss my beard which was a bit of a chin pet....

But I have been suffering from stress/anxiety related physical issues (which I have had intermittently in the past 20 years) to the point where I have been through the local emergency department three times in the last 2 months (2 admissions with no indication of any physical causes).

I have had to give up my part time work as a result of this as well.

I am seeking professional support through counselling, and I have had discussion with my GP regarding the emotional side effects of some of the support drugs (Dexamethazone in particular), but I was wondering if anyone has any insights into this side of chemotherapy at all?

Cheers!

☝️