New diagnosis, surgery imminent

Hi Christine: has your daughter stopped lashing out at to yet? How are you coing yourself? I finished my radiation at the new Olivia Newton John Cancer and Wellness Centre on 23 January. The radiation drained me each day for 25 days and aggravated my cervical facet joint inflammation from the hard steel table and the position I had to lay in so they could get the beams into the right spots. We tried a number of options including Fentenyl lozenges and before and after each treatment, increased Prednisoline and bubble matting to absorb the shock of the table movement. In the end it was only the oncology masseurs who were able to unknot the muscles and tendons around my neck and down the arms. I went to the YWCA encore post breast cancer exercise group last week and found myself doing the laughter yoga and other exercises from the sitting position and attempting new ones in the hydro pool. I have spent a week in agony with pain in so many joints. Yesterday I ended up at the ONJ Wellness Centre getting ischemic massage from toes to neck. Today I have skipped exercises and am going into have nerve conductivity studies on both legs. I have also got myself a new oncologist who was very pleased when I rang yesterday and took up his offer of an alternative Arimodase hormone because the Anastrozole was contributing too much to my joint pain. This oncologist explained why I hadn't been offered chemo when their were tiny cells in the Sentinel node. I also have to get bloods taken today for my 6 monthly prescription for biologics for the RA and PSA as well as my blood clotting factor because it has been all over the place since I stopped the radiation . Hope this finds you well. I do apologies for not writing for months but the new drugs ( hormone and antidepressant ) followed by radiation for nearly 6 weeks has stopped me in my tracks. God bless and keep you. Jan

What a mess you and your daughter are living through, it has many parallels with our best friend who was diagnosed with rectal cancer after his father collapsed with undiagnosed bowl cancer. Drs told him (r) that his fathers type was very different to his . After chem etc and being told they got it all. There was only one cell in the 1 st of the 22 lymph nodes they removed . They went to visit the child and granddaughters in England for 5 months, came back for routine checks and the chest CT showed multiple diffuse metastases. He refuses to talk about it or see a counsellor. The public sector oncology units I have been in so far have wonderful caring staff and great counsellors. Our friends have only visited me once since I was diagnosed and had surgery. I feel like a pariah. I talk openly and freely about how I feel and my pain from withholding the Methytrexate that I normally take for my multiple types of arthritis . My psychologist suggested I try a short course on pain management that is being held here in Melbourne at the end of Nov and early December. I hope I can arrange my radiation times around the times of the course. I can't say I am looking forward to the side effects of the radiation and I don't know if the hormone therapy is going to clash with the biologics I take for me arthritis. The oncologists and rheumatologists and neurologist are all going to have to work very closely together on this. I also saw a new psychiatrist last week who wants me off my current antidepressants ( I have reactive depression to the ongoing complications I have had) . The old one ( psychiatrist) is going on 12 months maternity leave. The new one wanted me to go into the private hospital he works out of while come off one drug and start the new one . I refused. If it had been a hospital I was comfortable with I would go in but I am not prepared for unknown standards of care, the style of nursing in this new hospital and the joy of trying to educate a host of new specialists re my multiple health up issues and starting the radiation at another hospital. Too many unknowns for me at this stage. I have been burnt too many time by private Hospitals and some public hospitals. I want to stick with what I know and what works for me. I am struggling as it is, without that added stress. I am interested in the breast reconstruction they did for you. How long after the treatment regime did they do it? what was involved? Who suggested it first! You or the health care team? I hate what I see in the mirror. It looks like a area the size of an orange has been removed and the suture lines just approximated as quickly as possible. Ugh!! I am so pleased you can keep on helping your daughter regardless of how angry she is at this time. Have you read any of the writings by Dr Kublar Ross on Death and Dying. Although death is not an issue here the stages of grieving are that same whether it relates to health, social insecurity , marriage breakdown, loss of your home or a job. God bless you.

I work at Toowong!! How is that for a small world Jules!!

Im under the Mater. Ive had all my ops there and treatment when it finally starts! arghh

 

My name is Jeanette ( most people call me Jan). My husband was a senior sciences and maths teacher in the Vic system for 40+ years. I got used to being called ," you must be David's Wife) . I didn't like it but they were so happy for their children who loved his style of teaching that I just learned to live with it. I was a professional from 1966 till the end of 2008 when I had to give up working because of the complications from my RA and other arthritises. I have been a nurse, a trained Safery & Workers compensation specialist (did a Grad dip in occupational hazard management at the age of 40) and retrained again as a Cert IV in Training and Assessment in 2005 and upgraded qualification in 2008 . I too had severe post natal depression ( after my second child) when I had one up and one down every two hours, 24 hours/ day for more than 12 months. Number three was easier even though number 2 ( son) was a severe asthmatic and had repeated bouts of synovitis in his hips over a year. My husband is very supportive but is disabled in his own right. He had to retire early as well because a virus destroyed his balance centre and he couldn't concentrate of class work and stay in the vertical position ( that's how it was eventually explained to us by a wonderful dr in Melbourne). Thanks be to God we travelled overseas before our combined health stopped us in our tracks. We still want to " grey nomad" when our health issues become more manageable. We had planned to go to Cape York this year with our caravan and camping gear. I won't give up hope that we won't do it in the future when our lives are more stable. We have 33 y/o son recently divorced living with us in this small cottage. It was built by Ds grandfather in 1910 as a 2 bedroom home for himself and their only child. They had been told to move her into the country or she would die from the after effects of scarlet fever. She lived here till 1990 and die at 99.5 y/o. We are packed in like sardines but making the most of it until our home in the country can be sold. The economy in the rural areas has crashed dramatically, no thanks to companies like Coca Cola Amytal and Fonteera. Have been out and had blood taken to see how my INR is coming on after weeks of self administered Clexaine . I really do not want any more episodes of pulmonary emboli I. 2 bouts in 14 months were enough thank you. I am also getting over a knee replacement in March this year to try and get my sciatica and biomechanics back under control. I am to see a new psychiatrist tomorrow because my present current one ( last 6 months) is pregnant and going on maternity leave. I do have a psychologist here now but am limited by the governments funding re the number of visits/ year. I started seeing her because I have to wait up to 15 months to get into a pain management centre here in Melbourne. Enough of me. Thank you for sharing about yourself. I would love to be able to talk one on one with you. You sound so interesting . I don't know how that works in this network. I guess I'll find out some how. Best wishes. Jan

My name is Jeanette ( most people call me Jan). My husband was a senior sciences and maths teacher in the Vic system for 40+ years. I got used to being called ," you must be David's Wife) . I didn't like it but they were so happy for their children who loved his style of teaching that I just learned to live with it. I was a professional from 1966 till the end of 2008 when I had to give up working because of the complications from my RA and other arthritises. I have been a nurse, a trained Safery & Workers compensation specialist (did a Grad dip in occupational hazard management at the age of 40) and retrained again as a Cert IV in Training and Assessment in 2005 and upgraded qualification in 2008 . I too had severe post natal depression ( after my second child) when I had one up and one down every two hours, 24 hours/ day for more than 12 months. Number three was easier even though number 2 ( son) was a severe asthmatic and had repeated bouts of synovitis in his hips over a year. My husband is very supportive but is disabled in his own right. He had to retire early as well because a virus destroyed his balance centre and he couldn't concentrate of class work and stay in the vertical position ( that's how it was eventually explained to us by a wonderful dr in Melbourne). Thanks be to God we travelled overseas before our combined health stopped us in our tracks. We still want to " grey nomad" when our health issues become more manageable. We had planned to go to Cape York this year with our caravan and camping gear. I won't give up hope that we won't do it in the future when our lives are more stable. We have 33 y/o son recently divorced living with us in this small cottage. It was built by Ds grandfather in 1910 as a 2 bedroom home for himself and their only child. They had been told to move her into the country or she would die from the after effects of scarlet fever. She lived here till 1990 and die at 99.5 y/o. We are packed in like sardines but making the most of it until our home in the country can be sold. The economy in the rural areas has crashed dramatically, no thanks to companies like Coca Cola Amytal and Fonteera. Have been out and had blood taken to see how my INR is coming on after weeks of self administered Clexaine . I really do not want any more episodes of pulmonary emboli I. 2 bouts in 14 months were enough thank you. I am also getting over a knee replacement in March this year to try and get my sciatica and biomechanics back under control. I am to see a new psychiatrist tomorrow because my present current one ( last 6 months) is pregnant and going on maternity leave. I do have a psychologist here now but am limited by the governments funding re the number of visits/ year. I started seeing her because I have to wait up to 15 months to get into a pain management centre here in Melbourne. Enough of me. Thank you for sharing about yourself. I would love to be able to talk one on one with you. You sound so interesting . I don't know how that works in this network. I guess I'll find out some how. Best wishes. Jan

Hi there,

would love to address you as something other than "D's wife" ;-)  When I was married I was one of those women that absolutely hated having mail addressed to "Mrs Jo Bloggs" - lol, bit of a feminist here. 

You've definitely had a rough go of it and talking to someone or a group of someones who have been there and done that is very helpful.  I have a 3yo son (who I had at 36) after a life up until that point of living overseas, travelliing, being a corporate professional and suffered severe post natal depression (didn't help that my son also had silent reflux and screamed his head off 24/7 for the first 7 weeks of life :-/).  Anyway, my son and I were admitted to a mum & baby hospital for mum's suffering PND (basically a psychiatric facility) and I benefited from lots of therapy, psychiatry, medication etc. and now life is very good (even despite my recent diagnosis).  I say all this because I have an intimate relationship with depression and to be frank it sounds like it's something you are battling with on top of your other health issues.  Reaching out, accepting help offered, and talking to others who have battled in the same way (whatever the battle is) is extremely beneficial.  I still take a daily anti-depressant (Pristiq) which has been a miracle drug for me and I will more than likely be on it for the rest of my life to keep my serotonin levels balanced.  I'm a very strong person and used to believe in mind over matter for everything until I experienced PND and realised that I couldn't overcome it with force of will alone.  Have you considered giving anti-depressants a go?  Do you have a supportive partner / family nearby?

On a positive note, from what you described with the BC, it sounds like the lumpectomy and node biopsies (followed by radiation of course) may be all you need to do.  I'm just assuming from what I read that you got the all clear on any cancer in lymph nodes or anywhere else? - that's amazing news, congratulations!

With regard to social life, now you're living in the city, have you thought of seeking out a group or two of women going through similar things to meet for coffee etc.?  If you're in Melbourne I'd imagine there are lots and lots of them available to you.  I'm always happy to talk and clearly so are lots of really great people.  After you reach a point when you feel better physically perhaps you could consider volunteering somewhere; a womens' shelter for example as someone with your experiece as an RN would be highly sought after.

Keep your head up "D's Wife" - we are right there with you!

Jules :-)

Hi Jodie,

glad to hear you are sounding so "up" - as you can imagine I am hopeful that the wide local excision and sentinel node removal is it for me.  I am not looking forward to that wait between having the initial surgery and finding out if there's any more to be dealt with - I've been told that wait could be 7-10 days, will totally do my head in :-/

I'm having my op done at Royal Brisbane, I live in Toowong.  Got a call from the clinic yesterday to advise that my pre-admission appointment is scheduled for next Wed (Nov 13th), pretty much an all day thing from what they described.  Haven't rec'd confirmation yet but assuming surgery may be end of next week.  Guess I better make this weekend a ripper - lol.

Congratulations on the good news you received with regard to the bone & ct scans - that's awesome :-)

Good luck with the next steps, let me know if we're at the same hospital as no doubt our paths will cross.

Jules x

I a routine mammogram in August. Breast screen Vic at St Vs Melbourne were fantastic. Could only be picked up by mammogram and sterotactic X-ray . Ultrasound and tactile techniques failed.I had to have my stereotactic biopsy delayed because I am on warfarin for life. To cut the story shorty I had a large lumpectomy and node biopsies on 22/11/13. I spent 3 days in hospital. I have an appointment with radiation oncology at the Austin H. Next week. Although I have been a RN since 1966 this blown me out of the water. Far more so than the 5 major arthritises I have been living with for 10 years that I know of but more likely 20+. I am off my RA and PsA Methytrexate till the wounds heal otherwise it will take more than 5 weeks to heal. After hyperacussis and toxic tensor tympani syndrome which developed 2 years ago so I have no social life after 40 years of professional work. This has blown me out of the water. I am out of my comfort zone since we were required to move to the city last year for health reasons after 38 years of living in the country. I need to talk with someone who has been there done that if you know what I mean.

I a routine mammogram in August. Breast screen Vic at St Vs Melbourne were fantastic. Could only be picked up by mammogram and sterotactic X-ray . Ultrasound and tactile techniques failed.I had to have my stereotactic biopsy delayed because I am on warfarin for life. To cut the story shorty I had a large lumpectomy and node biopsies on 22/11/13. I spent 3 days in hospital. I have an appointment with radiation oncology at the Austin H. Next week. Although I have been a RN since 1966 this Belen me out of the water. Far more so than the 5 major arthritises I have been living with for 10 years that I know of but more likely 20+. I am off my RA and PsA Methytrexate till the wounds heal otherwise it will take more than 5 weeks to heal. After hyperacussis and toxic tensor tympani syndrome which developed 2 years ago so I have no social life after 40 years of professional work. This has blown me out of the water. I am out of my comfort zone since we were required to move to the city last year for health reasons after 38 years of living in the country. I need to talk with someone who has been there done that if you know what I mean.

Hi jules, Welcome to the group :-) I'm about 4 weeks ahead of you. I also had lobular breast cancer. I had a wide excision to start off then a mastectomy within the week. I had 2 positive sentinel nodes so when I had the mastectomy I also had an axillary clearance where they took 30 nodes but thankfully they were negative. I've had my bone scans and ct scans and thankfully it hasn't spread :-) I start chemo Tomorow and quite nervous. I had a port put in last week to save my veins and to hopefully save me passing out ( bad bad needle phobia here lol ) I'm also in Brisbane. Where are you having your op? Jodie