Venting

It has been an awful week dealing with the news that my mother has been diagnosed with inoperable liver cancer. And even more so at this time of the year. She has one large tumour beside her gallbladder and another on the other lobe. After her 2nd visit with the oncologist today ( who has consulted other specialists) it has been decided that chemo or radiation treatment of any kind would not help in any way , and surgery is not an option because of both lobes being affected. The only treatment that might occur is if the tumour blocks the outlet of her liver causing them to put in a stent to keep it open and preventing total liver failure. And they will continue to monitor her with regular blood tests to determine the progress of the cancer.
Mum is feeling more reassured by having a great specialist who she has faith in and her spirits were high when i spoke to them tonight. Mum has the ability to hear want she needs to hear, which is not a bad thing, but my Dad is more realistic and realises the full extent of her diagnosis and while he is is staying strong and positive in Mum's presence, he is underneath his brave front a totally shattered man, who knows that he will be losing his beloved wife of 55years to this horrible disease., and is just praying as hard as the rest of the family that her remaining time will not be spent in suffering as the cancer spreads.

I am trying so hard to be strong for them and other close family members including my own kids and support them in any way possible , but am struggling with the knowledge gained from having nursed terminally ill cancer and especially liver cancer patients firsthand and what it entails.
The intense stress of this past week has now caused me to be struck down with my 6th painful attack of Shingles which has erupted in a rash on my forehead and the intensity of th e pain and itching is driving me crazy. And pain is also happening on my scalp now.

I am hoping that having started the anti virals my GP has prescribed to keep on hand for this purpose i can reduce the symptoms and length of this attack as i did the previous one and avoid the resulting post herpetic neauralgia that already plagues me from previous attacks in other areas including my face for years.
But i dont know if it will work as the Dr has told me that because of my repeated attacks and the neurological damage we really need to try and treat it before the rash erupts. Unfortunately in this attack there were only an itching and flu like feeling with sweats and no fever which i put down mistakenly to being extremely tired which is normal and having menopausal hot flushes and i failed to realise was the beginning of Shingles again. So am feeling so frustrated and angry that i cant go near my Mum and hug her till the rash has healed as her already weakened immune system couldnt cope and fight off the Shingles Virus.
I hope this makes sense as i am crying as i type, but i cant speak of my own fears to anyone close to me as i am trying to keep strong for my family who need me not to fall to pieces at this time, while inside i am raging, angry and grief stricken at the knowledge that my Mum doesnt have much time left, and will never her see her newly engaged granddaughter become a bride in a few ears time or welcome a future great grandchild into the world. I call my mum everyday and i dread the day coming when she no longer is there to answer and tell me about her day
Thank you for listening and giving me somewhere i can unload a little .
All we can do is cherish and surround her with love and family in her remaining time with us. Life can be so bloody unfair!!

I am so sorry to hear about your Mum Mrs. S. It is so hard when you learn that any family member is dying, but when it is your Mum it is really hard. I often think of my Mother and how she only ever saw two of her great grandchildren and how she would have loved to watch them grow, but she had me "late" by normal standards, so she would be over 100 now! We had her with us for many years after my Father passed away and we also knew she was dying for some months, but not from cancer. It is really hard.

However, I don't agree that you have to remain strong for your family. They need to be supporting you right now. Holding all your emotions inside will only make both your Shingles and your pain worse. At this time you need to look after yourself first. That's not selfish, it's good self-management. Your family must look after you and you can do what you can for them, but please don't force yourself to remain "strong for them". You are all in this together.

I hope that your Shingles attack is short lived and that you have some quality time with your Mum. Remember that we are all here to support you, so just come here and vent when you need to. Do you have a friend or a psychologist that you can talk to? Sometimes talking to someone outside the family can help a lot because they are not emotionally involved and they can listen and support you.

Let us know how you are doing.

Mary

Oh Mrs S, I am so dreadfully sorry to hear of your dear Mum's plight and your outbreak of shinlges....just dreadful.

I whole heartedly agree with Mary, this isn't a time for you to be strong for your family, you need a whole load of TLC yourself. Your husband has always sounded as though he is a very understanding and wonderfully supportive man, I'm sure he is going to be the same solid rock as you endure all you have on your plate at the moment.

I hope the drugs you have for your shingles outbreak work like magic and you will be recovered very soon so you can go and wrap your arms around your Mum. I think your Dad could also do with a big hug! Being strong for your Mum and Dad is ok, but please be kind to yourself amongst your family and friends, cry and talk all you need.

Take good care, all the best 🙂

Hi Mrs. S,

Really sorry to hear about your Mum. Leaving this world is always a frightening prospect, but under these conditions, it seems to really get us upset much more. I know you will be a great support for both your parents during this difficult time, but just make sure you take time out for yourself to debrief and unload all that emotional tension, otherwise your CP is going to go through the roof and will eventually lay you out.

I pray that your Mum will have a peaceful and relatively pain free journey. And I pray for your Dad, you and the rest of your family during this difficult and trying time.

Take care and please keep in touch.

Peter

Dear Mrs Shingles- its peppa here (pepps)

Please accept my Deepest Condolences for your Mother Passing-
My Heart goes Out to you at this time
but
Please know that Everybody -will Always be here for you-
Whenever
you may feel as though a Caring Shoulder-might help

Thinking of you in my prayers-

"in Caring we Share
in Sharing we Care"

Kind Regards to All-
peppa ( pepps)

Hey Mrs S,

So sorry to read of your loss it must be hard I havenet lost a parent or parent in law so I don't know how you would be feeling but I am grieving for you .
You need to be able to tell your direct family about how you are coping and be able to say "hey I can't handle this shit without help ok "sorry to swear but my psychologist would batter me with swear words and she was a lady also , so if you need help bloody YELL.
I am in for surgery tomorrow Monday 15Dec so I hope all works out and I get some relief fingers crossed .
MERRY CHRISTMAS TO ALL.
Johnno

Oh Mrs S,
I wish I could give you a hug. Having just been down the road of terminal cancer with my Dad over the last 12 months I can sympathise with all your family must be going through. There is nothing I can say or do to make it better except to just let you know that you will be in my thoughts often.
Many hugs
Wendles

Thankyou to all for your messages of support, it really means a lot to me to be able to vent my feelings here without adding more to the heavy burden my family is already under with Mums diagnosis. My heart goes out to you Wendy on the sad loss of your dad.
The anti virals have been working on my shingles outbreak, but i think i may end up with a scar or two between my eyebrows if the bio oil doesnt work.
Have just got back from seeing my specialist at the Metro Spinal Clinic and we have decided to seek an opinion from Clayton Thomas in regards to undergoing a ketamine infusion. And i have an education session late next month to learn about the Spinal cord stimulator as my specialist feels that this might be my best option. But of course it all depends on wc and if they give me permission for the treatmemts.
Hopefully i will be finally getting a foot brace for which i had sent the necessary paperwork back at the start of September, but it was only last week when i enquired about their decision and the time it was taking , that they told me they had lost it??? So now that i have resent it a decision will hopefully be made quickly as i am using a stick for stability and to avoid the regular tripping over my own inverted foot as i was losing spacial awareness of its position.
On the 19th of Jan it will have been 2 years since my productive and useful life mentally & physically as i knew it , was turned upside down by the stupidity of a speeding hit and run driver . Crossing everything that 2015 will bring some relief .

It took 4 years before I was given a foot splint to hold up my left foot, doing any sort of walking took a lot of mental concentration, if you didn't remember to lift it higher to compensate for the droop, lots of accidents happened, from stubbed toes, to toe nails ripped back, and the tripping leading to falls, not even a cane prevents the falls, I use to get into trouble for using the cane on the wrong side, I used on my left side, which I am told is wrong, I was forced to change over because of my shoulder injury.
But since getting the splint, those sort of accidents are behind, except when I don't wear it around the house, when I am wearing it I also have a compression stocking on, as my left foot suffers adema since the accident, if I don't it swells out and makes wearing the splint a nightmare, I have bought a pair of sandals to use with the splint, they have a heel strap, one that goes over the joint of the foot and one over the toes, I find this the most comfortable shoes to wear, the straps are velcro so I can adjust them as my foot swells, enclosed shoes don't give you that option.

Don

Heres hoping it doesnt take that long Don, it must have been so frustrating and painful for you. I use the cane with my right hand as it is my left foot that is inverted, but i had to ask as i was unsure. It does give me a little more stability. But because my ankle is stiff it is difficult and painful to try and straighten it as i step out. I struggle to walk due to the back and leg pain and usually have to stop every 10 metres or so before setting off again. And yes i find the cane doesnt help too much in preventing a trip. My standing still ability before pain peaks is only about 10 mins max.
Hard to believe i used to powerwalk around my aged care workplace all day and was affectionately known as speedy by the residents. I used to joke that i had to keep up the top speed as my legs were too short .Those days are long gone.
Thhanks for the tips , i find myself often wearing sandals such as these as i can easily adjust them too for the swelling.

I have been sweating and overheating terribly the past few months having to strip off ( within reason of my surroundings lol) and then getting the chills and piling the clothes back on. Hubby has a chuckle and tells me wait three mins and you will be the opposite again. I mentioned it to the specialist today and he feels it could be attributed to all the heavy medication i am on. Its happenning day and night, and my nape, back and even my kneecaps drip, so i am applying spray deodorant on all in an effort to stop drenching my clothing. I think i am supporting that industry considering how how much i am buying it.

I find my left leg tends to sweat more, especially at night, because I sleep with my legs bent, as I find that the most comfortable position laying on my back, and it also limits the back spasms, sweat rolls down my leg, I have even developed rashes at the underside of the knee joint from being wet all night.
Medication can play around with your body controlling it's heat, I find if I have to take a lot of pain breakthrough meds, I get hot and cold flushes about 1/2 hr. after taking them, it then tapers off as they lose their effectiveness. I also had to by trial and error, find the best time and what meds to take together, I use to take all my heart meds at one go, but since the introduction of pain meds I was having all sorts of problems, even though drug interactions websites said there was no problems, so just because none are listed doesn't mean you will not have problems, when they list reactions they go by percentages, rare or infrequent reactions don't get a mention.

Don

Omg and thank u mrs S, Peter, Don and everybody else who has listened to me...
And Johnno, I'm hearing you....far out I want this pain to stop too....no ketamine treatment, no stinal stim...public hospitals won't treat me because I'm on w.c....and my insurance co buy me a vacuum cleaner....omg...omg...omg...well at least I won't loose a partner because no partner nor carer to loose so maybe I should be grateful for that...sorry guys I'm being sarcastic...

I'm so very very sick of myself, no sleep because of stupid back n my legs

1. Pain (100%)
2. Numbness/tingling (99%)
3. Sleep disturbance (99%)
4. Weakness (82%)
5. Muscle cramps/twitches/spasms (99%)
6. Stiffness (90%)
7. Fatigue (99%)
8. Joint pains (72%)
9. Balance difficulties (70%)
10. Loss of mobility (98%)
11. Burning up feet and now whole body burning up...hmmmmm

Oh and I sweat sweat sweat sweat even when it's freezing!!!!

Hmmm this is my life...oh incidently it's not a life...

Mrs s, I'm so sorry to hear about your mum and I'm sorry I can't say more atm I'm just not well enough...

I just changed pain killers yesterday and I'm not coping with the new meds so I'm back to the dr tomoz...

What can I say!
I really don't know what I've done to deserve this misery of a life!

Take-good care everyone...
And big hugs to all!

My best mate turned 50 on the 16th August this year , on Monday 18th August went his doctors to get some results and was told he would be admitted to hospital on Wednesday 20th August he had his bowel removed (cancer) plus a large amount of cancerous tissue , he also has some cancer shades on his liver.
He started chemo in September ups and downs with that, with the flexibility of my work he has been coming with me on drives to site visits and has mentioned his lower back was sore , he went back to the hospital and they did an MRI to see what was going on and he has had the cancer attack his L4 and it is fractured , back in hospital where they can't operate due to chemo so he has been fitted with a brace and now has radiation to help the back bone to heal .
And I thought I had it bad .
Johnno

So sorry to hear this Johnno. Life can certainly deal us some bad stuff! I do hope that your friend manages to get into a decent remission.

I do know a chap who was given 3 months to live in 2001. He also lost a great portion of his bowel and then had to have an emergency operation on his liver. The surgeon said that he would have been dead in 2 more days. The cancer did return, but not until 2010 when he had the rest of his bowel removed. He has been clear since and he completed the 12km City/Bay (walked it) this year. He is very active with support groups and self-management groups.

So I guess you never know what will happen with this beast of a disease and yes, you are right, our troubles seem to be not too bad in comparison.

All the best,
Mary

Hi All,

Please don't think that the pain we suffer as a group is small or menial , the pain we suffer is something that we as strong individuals learn our limits and try to stay within these boundaries .
At times as a group or forum we hear the agonies our friends (on this site ) are suffering we send unending letters of support and prayer and I hope this warmth we send is beneficial.

My best mate was handed a death sentence two days after tuning fifty and has since August gone through unending hospital , chemo, radiation and medication .
What amazes me the most is here is a man who has been told that he has a terminal illness, and he still thinks of me and asks how I am coping with the pain that I have .

So today I am taking a leaf out of his book and I am going to ask all how are you, how are you handling the pain , is there anything I can say to help ,as I can't remove your pain ,and I hope you have a great day where you can manage as best you can under the blanket of pain you have .

Cyber hugs sent and hopefully received .

Johnno