Wednesday, 20 January 2010

A momement in time

 Life has been very busy here, as my DH is not great he has been diagnosed with cancer, and it has spread to his bones.  We only found out as he had a cough which lasted for a few weeks, with a viral infection, so he was on antibiotics.  The course of antibiotics finished and he had pain in his side, GP thought strained ribs or fracture so off for Xray, only to find a growth in his lungs. This was discovered to be Cancer three days before Christmas.  So we have been up and down to Hobart all over the Christmas New Year period for numerous tests, scans, and biopsies, now we know that it can not be operated on, which was an option but having it in his bones makes this null and void.  Chemotherapy is not an option either, for which he is grateful.  So on Tuesday we go back to Hobart and begin talking with a Radiologist oncologist?  He will be having radiation therapy to minimise pain.  We know that this is about managing the symptoms and not a cure.  It has all happened so quickly that it has really taken my breath away.  My DH is my best friend, we have been together for nine years this month.  We have a wonderful lifestyle, our relationship is almost beyond description.  We share many things in common, we talk about everything, we do fight...(I have a temper),  we love each other and tell each other often throughout the day we laugh a lot have fun and enjoy silences too That may be hard for people who know me to  If I am away from home we speak on the phone, every day sometimes more than once.  We have been fortunate that we have been able to be together so much.  I work generally one or two shifts a week.  Which compared to most married couples working 5 days a week means we have spent 3 times as long together so we have actually been together almost 20 years in time.  We are content and feel so rich with all we have especially each other.
He  loves me just as I am, not wanting to change me, well he loves red lipstick, long hair and fringes, me I don't like beards so a good compromise, and red lipstick looks okay on   There is something so amazing about being accepted totally for you, as you are.

I count myself so fortunate to have met him, we are both philosophical about this journey we are taking together now, and with his daughters.  The roller coaster of emotions overwhelm me on a daily sometimes hourly basis. We hide nothing from each other and have said the same to his girls.  That we don't want anyone to feel they have to be strong for us, or for us to be strong for anyone else.  When he holds me in his arms as I sob I feel it is the safest place in all the world.  When I am kissing him, or just hugging him because it is such a lovely thing, it feels so good and safe.  When we sit in our chairs reading or watching TV and his hand reaches out to take mine.  Such great feelings of love togetherness, these have always been part of our relationship because touch and warmth are so important. Communicating is so important, listening to each other is so important.  When I go up to him and just kiss him as he reads or has his cup of tea, ahh what bliss.
We go for a walk everyday, we sit out on our deck watching the eagles, the water, the chooks, have a wonder about the garden and feel so content and appreciative for what we have had, what we have now and our deep abiding love for each other.  We both have a great sense of humour

 If I knew what I know now when we met I would still choose to take this path, with him , as my life has been enriched as he says his has with our relationship.  We continue to experience new things with each other, ie I took him through his first ever automatic car wash a little while that is an exciting

Do I share this with people this very personal journey, or just keep it to ourselves,  a decision not easy.  I feel that some of you have got a feel for my DH through my writing.  It is funny when life is challenging you, and the person you love most in the world.  I guess you can either close down and bear it all alone.  You can wallow in the misery, and fear, or you can take it one day at a time, accepting the emotions that come charging out with no control, knowing that in one day you may sob your heart out, but also laugh heartedly, that you will sit watching the beauty about you sharing it together.  See the love in both of your eyes.  Am I fearful of the road ahead, off course, I am.  However I am also so aware that I have so much more with this wonderful man than many many people ever have.  I am so grateful and appreciative.  There is another way to look at this journey.  We have time and knowledge that so many do not get to share.  My Dh is a lot older than I am, and he has had a life of amazing experiences, and will have more.  It seems to me that sharing having time to share must make this journey easier than if one day he was here and then he was gone.   Have we given up hope, no, we are realistic, grounded and far more aware of how things are than many people.   The radiation may stop the pain, but it will not be aimed at the primary cancer.  We have time, how much is unknown but believe me we have never taken our time together for granted and will not be now.  We are so blessed. 

I will continue to write my blog, and attempt to keep my garden, with some help.  It has got away from me over the last month, amazing how weeds grow without any water! 


belinda said...

Good Luck and best wishes for your journey.

Kind Regards

greenfumb said...

I am so sorry to hear that, I wont go into details but I have "been there" as they say and I think in some ways it's better than a car accident, you get to make the most of the time you have, don't stress the small things and so on. Its very very hard though when you are so happy together.

Anonymous said...

I am so sorry Aussie. May you all have the support and find the solace you need in those around you and in each other:)

Discs said...

Hi Aussiemaid
What can I say to even convey how I am feeling after having read your post. I feel extremely sad and so very hopeful for the both of you. I cannot even fathom the rollercoaster of emotions you are experiencing and yet feel enlightened by how you seem to be taking all of this in. I would like to take this opportunity to send you some cyber hugs and to make you aware that my thoughts are with you. Life is indeed so precious and you clearly demonstrate the partnership and love that you have with this man. Like you have written... Take one day at a time and it really is the "simple things" in life that will make the world of difference. Thankyou for sharing all you knowledge in gardening and for having written this post as well.

JOC said...

All I can do is send my heartfelt thoughts for good and peaceful times together.
I can't imagine how it must be and if there is any help I can give please let me know.


Margo said...

oh Aussiemade such sad news. Sending you lots of hugs and positive vibes for as many happy pain-free days as you can manage together.

I am sure you are still in a total whirlwind and it's been holiday time but I highly recommend you get in contact with one of the cancer care co-ordinators down in Tassie , as it sounds like it was primarily lung cancer?

I worked with CCCs on a project in VIC and they are just brilliant and a great source of information and support - for you and your DH - and they will be able to point you in the direction of services you might not even know are available to help you on your journey.

big hugs

Tammy James said...

I feel a bit like an intruder, this is my very first visit to your blog (I believe) Your post here has touched me and I feel such a sadness for you and what you will be going through. I am glad you have support and also the optional support of the blog network/community if you choose. Your attitude is admirable and I wish you strength, support and time.

Barb said...

I'm crying for you but have no words to make things better for you both.
This is a fear that I have, to lose my husband but for you to know that may happen soon, I'm so sorry.

Barb W.

Deanna said...

Dear AM
I have written this in two parts coz it was too long...
My thoughts are with you & I truly hope that you & your DH get the better of this terrible disease. I am on the other side of the country in WA so I cannot give you any 'on the ground support'. My hubby & I bought 100 acres in Petchey's Bay and it has been our 5 year plan to move to Tas - not there yet but soon. I can honestly say that I know some of how you feel. My darling mum was only 55 when she was struck by breast cancer which went into her liver then bones. She came to live with me & I took 6 months off work to be with her. She made a great fight of it but unfortunately she was not lucky & passed away with me at home. There are a few things that I would have found very helpful in this life experience if I had learnt about them earlier & so I really hope that I don't offend or upset you & you don't mind if I share them with you. I also don't know if any similar is available in Tas but here goes

1. S/Chain were a total blessing. Without them I would have found more difficult to nurse my mum at home. They were able to send a nurse/Dr to my house, answer my questions as they came up. Also will assist as an advocate to help you get specialist equip may need. For example to raise level of toilet; lift bed; stuff to make showering safer etc as well as people to help care if that is needed or wished for. My mum became immobile & so their support was unbelievably important.

2. Independent Living Centre. We have this organisation here which provides advice to carers & hires out specialist care equipment at a very reasonable rate for people needing palliative care/frail/aged people. For lay people like meyou don't know what sort of things are available that can make life so much easier or comfortable. I hired a marvellous air finger mattress with a pump to change hard/softness called a ROHO mattress which you lay on top of a normal bed. It provides an amazing level of relief for bone cancer. I also found sheepskin booties and a sheep skin underlay really assisted to protect my mum's skin.

Deanna said...

3. Centrelink. will provide carers with a pittance of financial support but every bit counts.
4. Pain Relief. We used Fentanyl patches for as long as possible for pain relief rather than tablet pain killers or morphine. Fentanyl taken through the skin via a patch will do less damage to the liver/kidneys than oral pain relief tablets. While eventually we had no choice, my mum didn't react too well to morphine. Main problems initially were constipation (we managed this reasonably well with Senokot which is a reliably effective laxative made with naturally derived senna)& nausea (which we tried to manage with fresh grated ginger tea). We got to a stage where my mum did need constant pain relief & a bung was put in my mum's arm so that I was able to administer morphine to her at home. One of the things that we learnt the hard way was that leaving pain relief until it was very uncomfortable meant that more was required and it took longer to drop the discomfort down rather than keeping a maintenance dose going.

5. Friends & Strangers. Probably one of the strangest things was the different ways that people we knew reacted. We pretty much had two responses. Friends that we had known for many years almost abandoned us in a sense. Many people are very uncomfortable as soon as you mention cancer. They don't know what to say,how to react, what to do. The other group just could not do enough - and please don't be proud - you will need people's help. Whether it is doing some shopping for you, or taking over transport for one of those diabolical hospital treatments or just hanging out with your DH so you can go and have a massage. One of the important things is for you to remain healthy & to not feel guilty when you need to take time out to keep your own sanity because it is exhausting & emotionally shattering journey. And without these things you cannot be of much help to your DH. The other thing that I experienced was the kindness of total strangers.

6. Doctors & Bureaucrats.
I found a large number of Doctors believe that they are God ! You & your DH know alot especially about your own body - what is working & what isn't. Ask questions & demand answers.
Bureaucrat. It is a bureaucrat's job ( and I know - I was one for 15 years !) is to ensure equity & follow rules. This does not always get you the service that you need !! Most things can be done even if they are not the norm. Push, cajole, find another one on another day - even if the answer is no initially it can become yes with persistence ! Examples - Centrelink; hospital bureacrats, Medicare etc etc
7. Laugh together - I know you do this ! But keep it up -it is so important now !
I really hope that you do not mind that I wrote this to you. I was just so upset for you over this news and thought that by sharing some of my experience something might be useful for you two. Take care, my thoughts are with you. Deanna

jaz@octoberfarm said...

oh i am soooo sorry to read this. but what a wonderful relationship the two of you have. i hope the news is good and all is going well. please take cre of yourself!

Anonymous said...

I have read your post about your dear Husband. I just want to say I am thinking of you, a stranger, yet a fellow Aussie, and that kind of makes us family lol. Sharon

The cottage by the Cranelake said...

This was heavy news. I hope for the best and You both are in my prayers.
Take care both of Your self and Your DH!

Aussiemade said...

Thank you all for all your support and comments. He is having palliative radiation therapy at present which involves us being in Hobart for a period of time. It is very intensive radiation. It is for pain management.

Nelly said...

I'm very sorry to read this, best wishes to you both.