DJ's Detour: Diary

Me and the Hot Flushin' Blues boys, in conjunction with Curves Weston, Wanniassa and Belconnen, raised over $8,500 for Bosom Buddies :))

I've met with Stephen Pike from The Q (Queanbeyan Performing Arts Centre). He has heard my songs and is keen to direct my multimedia stageshow. So stay tuned - hopefully later this year IT WILL BE ON!!

Very sad to farewell bosom buddy, Valerie Lee today. She was a good mate of mine, she was a good mate to many. She listened, she cared, she didn't judge. And she fought. I'll miss her.

Christo and I performed at the Cancer Council's Relay for Life yesterday. Many thanks to our audience of 4 for listening. And well done to the many participants.

It's on again. The Bosom Buddies Annual Gala Fundraiser. Saturday 8th May. "Life is a French Cabaret". This year at the Southern Cross Club Woden. Lots of entertainment with Peter Casey as MC. Looking forward to it very much!!

Saw the oncologist's registrar again. At least this I wasn't asked when my last mammogram was! Putting on too much weight lately...

26th October: I will talk at the Breast Cancer Network Australia's Mini-Field of Women hosted by the ACT Specialist Breast Care Nurses at Calvary Health Care. 12.30pm in Main Foyer. Talking in public is much scarier than singing in public.

KarismaKatz will play at a Bosom Buddie's function to recognise Australian Breast Cancer Day. 6.30 for 7.00 pm at Top of the Cross, Canberra Southern Cross Club, Woden.

July 2009: Lungs, liver, kidneys, uterus, ovaries all clear according to latest scans/x-rays. Yay!

Very sad new that Bosom Buddy, Netraska, passed away. Only 4 weeks from diagnosis of secondaries to gone. A shining soul with a smile I'll never forget.

'Hot Flush Blues' CD was launched to a lovely big audience on 19 June 09. It is receiving great community radio airplay and reviews.

I took to doing more lifting but pretty soon realised it was not actually a good idea... I'll go back to being quite useless when it comes to lugging band gear.

Looking forward to playing for Bosom Buddie's Xmas in July (in Aug
ust!!!).

May 2009: Almost 3 years after diagnosis! Actually noticed an increase in strength in my left arm a couple of months ago. And I was told that it would only take 6 weeks to recover! It's still nothing like normal but I'm learning to live with it. Still have some lyphodema. Still have big fears of the cancer returning. The fear drives me. Sex remains physically impossible. This is very sad for me. It's a good thing my husband and I are best friends. I'm putting on lots of weight...

The oncologist recommended I switch from tamoxifen to letrozole. I stopped taking letrozole after a couple of months because the pain in my joints was too strong and I couldn't exercise at all or move freely on stage. I'm back on tamoxifen. It is taking ages to get that bloody letrazole out of my system.

I was in a theatre piece recently called 'I Die'. There I was, naked on stage, pretending to be dead. I had pink hair and pink pubes. Must have looked quite strange among the predominantly younger and very thin others...

Currently in the midst of recording another CD 'Hot Flush Blues' to be launched on 19 June '09 (3 years after surgery). Looking forward to playing at Broadbeach Blues Festival end of May.

15 September 2008: I'm disappointed that I my application to ACT Arts for funding to put on my breast cancer show 'Hits Without Tits' was not successful. Perhaps it was considered too confronting... I was not happy to read that a huge amount of funding was given to someone to develop computer games! Fair dinkum, what is the world coming to?

27 September 2008: Another fabulous Gala Fundraiser on Saturday night. I sang my song “My Mother Was Right” and Melissa Etheridge's “I Run For Life” at the beginning of the night and the KarismaKatz 6 piece band provided dance music until the canned ABBA music took over...

We had such fun modelling the expensive clothes, although my back was aching the next day from wearing those ridiculously high heels. We weren't allowed to juggle our prosthetic breasts which was a bit disappointing. And I wasn't allowed to model the high fashion clothes without my boobs on. It sucks when people think they're being helpful but don't really want to get into the realities of breast cancer and have no concept of the crazy ways that us survivors cope.

3 October 2008: I am continually being told that I am inspiring and a role model. I struggle with this. I might look confident and strong on stage but I often feel quite fragile and scared and depressed and anxious.

I lifted a fold-back speaker a couple of weeks ago. This was a major breakthrough in my recovery. It took 2 1/4 years for me to get enough strength back to do that!

I had my bone density scan a couple of days ago and very happy to report that it has improved since last year! The exercise and calcium supplements are working!

I still see the psychiatrist once every couple of months. I still need to have the lymphatic drainage massage (I see Elsebeth Perry-Petersen for this). I still wear my sleeve, especially in the warmer weather. I still have pain from the operation and radiation. I still get very very tired.

I am hanging out to get my body in the ocean water. It's the only place I feel completely at ease.

26 July 2008: We had great fun playing for Bosom Buddies Xmas In July. Many thanks to the Blues Cowgirls and Glen Terry for helping us out. And to Bosom Buddies for their warm welcome and the gorgeous flowers.

5 August 2008: Christo and I will be on telly this Sunday 10 August, Channel 10, 8.30am!!!!

KarismaKatz Debut CD 'SPIRIT ON THE RISE' Launch scheduled for Sunday 24 August, 2 pm, Olims Hotel.

'Glory Box' the CD is available for sale by contacting me, (*NO LONGER AVAILABLE*) and 'GLORY BOX' - THE SHOW was held on Friday 9th May 08 at The Folkus Room. Thanks to all the Bosom Buddies who attended. It was the best night ever.

19 May 2008: Good news! I have found a director who is very keen to help me get my 'Hits With No Tits' show happening. It won't be until 2009 - so much work to be done before then.

20 May 2008: I was talking to a breast cancer survivor. She said her husband had not touched her since her operation. So very sad. What a stupid man. Cuddling without boobs is pretty good actually - you can get really really close and feel the person cuddling can feel your heart beating.

24 May 2008: Tonight I play at Cafe Woodworks again (2 years since diagnosis). I'm feeling more robust than this time last year but still need to rest a lot more than I like!

26 May 2008: Scattered Mum's ashes today out at River Farm (NSW). We went to the rock up the hill where she used to sit and dangle her little legs over while she played flute.

28 May 2008: Still seeing the psych at TCH. Still trying to come to terms with the fear of the cancer returning... I'm pissed off that I still have pain from the operation (the swelling is still going down!) and radiation, and lymphoedema.

29 May 2008: Bosom Buddies Xmas In July is on Friday 25th July. I'll be there with Christo, the Blues Cowgirls and Glen Terry, singing and playing up a storm.Also looking forward to Bosom Buddies Gala Fundraiser on 27th September. I'll be there too with Christo and the big band!

I must have lost my entries for these months. From memory, December and January were spent telling the radiation oncology department to stop hassling me while I got my strength back after chemo. And February and March were taken up with having radiation 5/7 days a week.

I met some lovely ladies at radiation. There we were in our horrible white gowns, all lined up, hair in all different stages of regrowth.

The radiation burned right through my chest and out my back.

On 20 October 2007 the 'Katz and I provided the musical entertainment for the Bosom Buddies Gala Function and Fundraiser in the Ballroom at the Hyatt Hotel.

Me and other survivors/supporters modelled some fabulous clothes on the night - what a buzz!

I have been seeing a psychiatrist at The Canberra Hospital to deal with my fear of the cancer returning. The sessions are helping me a lot. Throughout this whole ordeal I have found most aspects of the public health system to be very good.

With some very generous financial assistance, the 'Katz and I are currently recording a CD of original songs 'Spirit on the Rise'. I'm still low on energy (and the 'Katz aren't spring chickens) so recording is a slow process.

On 19 July 2007 I had my porta-cath removed. What a relief to get that thing out of me.

On 27 July 2007 the 'Katz and I played at the Bosom Buddies Xmas in July. I was joined by Judi Pearce and Juanita Cucinotta (The Blues Cowgirls) and by bluesman extraordinaire Glen Terry. What a fabulously fun night - thank you for the flowers!

I participated in the Breast Cancer Network Australia's Field of Women event on 11 August 2007. It was a logistical feat and I found it to be really quite sad.

On 19 June 2007 (a year after my operation) my Mum, Dorothy, was diagnosed with advanced bowel cancer. She is having chemotherapy...

I am so relieved that my sister's test results (for thyroid/lung cancer) came back clear this time.

On 26 May 2007 (a year a day after my diagnosis), my little comeback concert was held at Cafe Woodworks in Bungendore. It was a sell-out show and was exhilarating and exhausting. A DVD of the night is currently being produced and will be ready as soon as finances allow.

What happens next?

Now I just get on dealing with the usual (and challenging) 'life after breast cancer' issues, that 'one day at a time' thing that you hear so much about...

A lot of people said that I should write some songs about my breast cancer experience. I don't like being told what I should do so my initial reaction was to write a song called 'No Song'. A couple of months after the song was written, I added a bit at the end of it and changed the name to 'Tell and Show'.

On 15 April 2007 I was feeling that the soreness from my operation and the radiation was manageable, so I celebrated by buying a set of prosthetic breasts. I wanted B cups but the sales person talked me into getting C cups. I wanted to change my mind but was too tired so I ended up with Cs. I wear them usually only when I perform. I have to wear a bra with them which makes the lymphodema worse so mostly I go without.

On 26 April 2007, a young woman, Michelle Simpson, who I wish I'd known better, passed away after at age 40, after a seven year battle with breast cancer.

25 March 2007 - DJ is ridiculously healthy

It has been ages since I last wrote. What a difference that time has made to my health. I am so busy gadding about, you wouldn’t believe it! I’m sitting in the fabulous yurt typing right now. It’s soooo gorgeous. I have stopped burning at last, and that is a relief (I’m back to swimming again).

My joints are still aching. I still have lymphodema but it is improving. I’ll just keep having the specialised massage. I’m still tired - but I do have fabulous bursts of energy sometimes. I wake up some mornings and am shocked to discover that I have no boobs, just pain, and I realise that it’s all real, not just some horrible nightmare.

My appointment with the oncologist is this week. I’ll find out all the horrible things (and the good things) about the hormone medication that they’ll want me to take for the next 5 years. I’m not looking forward to it, but have put it off for long enough.

We (the family) are going on a holiday in May. We’ll be spending one week in a country house down the coast. We are very excited about this as it will mark the end of this horrible chapter.

Kev and I have been enjoying going out to see bands, and to dinner sometimes. I cannot explain how bloody marvellous it is to not feel sick!

I have returned to work, slowly building up my hours.

And I’m singing and playing harp again. Our first gig at the press club went splendidly, with the help of muso mates, I got through 2 sets no worries! And we have some lovely gigs lined up and will be playing some new originals. On 27 July we’ll be playing at a Bosom Buddie’s function - that’ll be special, and for me it’s a good way to contribute to ‘the cause’. I have decided not to do the Kylie-style comeback. It helped me to focus on getting well, but the reality is that I’ll just ease back into performing instead. Although, the Cafe Woodworks gig on 26 May will be special too, as it will be one year and a day since my breast cancer diagnosis. What a celebration that will be.

Sorry for the short email, or perhaps you’re relieved! It must be a sign that there’s a lot less to whinge about these days. How cool is that?

Have I told you before that I have the most fabulous family and friends in the whole wide world?

I may not write again, I’m not sure - It seems to me to be that my detour is done and I’m back on track, except now I’m not driving at a dangerous speed!

If I don’t write again, immense thanks for everything you have done to help my family and I survive this nightmare.

Enormous love and gratitude,

DJ

26 October 2006 - so many strong women

So many of you are keeping in touch with me by way of email, phone and visits. Thank you very much, you have no idea how much it helps me to maintain a realistic perspective on things.I saw the oncologist yesterday. She noticed I was looking tired - her outstanding observation skills never cease to amaze me!

Only 2 more blasts of chemos to go! I hate the stuff - it sucks away my personality and my energy. Assuming blood test results are ok, next treatment will be on 30 October and the final one on 20 November. I am so sick of feeling so sick. I don’t feel that my body can handle any more of the stuff but at the same time I feel like I have started on this treatment plan so I better bloody well finish it. One thing that keeps me going is the knowledge that lots of other women have gone through the same thing, so if they can do it, I can.

The yurt plans are progressing slowly but surely. I’ve had some lovely outings (beside’s seemingly endless doctor’s appointments).

Physical yucky whingy stuff

With the last 2 chemos, my blood pressure has been a bit low and drops dramatically when I’m upright. This is getting pretty annoying because for almost 2 weeks out of 3, the only time I’m not feeling giddy is when I’m reclining. The trouble with all this reclining, is that it’s making me really sore (pressure points and muscle spasms etc.), not to mention the pain of lying on this bloody fluid build-up. And I do as much exercise as I can, but it’s not enough.

I had a lovely massage therapist come around. She loosened up my neck a little, did the manual lymphatic drainage massage, plus some relaxation stuff. The drainage bit worked for about an hour before it started to build up again, and the relaxation bit worked very well and I had a lovely long deep sleep. The wearing of a double compression bandage (from armpit to hips) seems to help reduce the fluid build-up while it’s on. As you can imagine, it’s not very comfortable, and unfortunately it makes the fluid build-up in my chest worse.

I have not had any cold-sores this time around, but I do have a disgusting case of oral thrush. What can I say except, gggrrooooosss!

Once or twice between chemos I have a really strong pain-killer at night time, just to be pain free for a little while. I don’t want to do that too often because I like it too much and might get used to it. I am very hopeful that most or all of this yucky stuff will sort itself out once the chemo gets out of my body

The hot flushes continue. Maybe I haven’t told you about those before??? My periods stopped in September and the hot flushes started! And they continue. Will my periods ever return? I will just have to wait and see.

My son visits often. I wonder how it must feel for him to have a sick mum - I went out to the shops - my husband pushed me around in a wheelchair. How would I copy without him? I went looking for a pair of swimmers.

While we wait for the yurt, improvements to the shed have been made - more light and space and less gaps (meaning less flies, mosquitos, bees and bug).

My wonderful family and I are all hanging in there and focusing on me making a complete recovery.

21 November 2006 - last chemo EVERI have had my 6th chemo and in 3 weeks time, and if I keep out of hospital, I should be done with the side fx of chemo forever! I can’t thank you all enough for helping me to get this far.

Yesterday’s LAST CHEMO EVER left me feeling exhausted and bloated and yuck. The side fx get more severe each time. The one before this made my quite nauseous and my tongue was so furry and the taste in my mouth was so disgusting. This, with all the other yucky things going on (anaemia, low blood pressure, fever, headaches, hot flushes, aching joints and muscles, etc) made me just want to run away from myself. Please let’s hope that the side fx are not this bad this time around. And please join me in sparing a special hope that my eyebrows and eyelashes stay attached. I also had an infection in my thumb last time - fortunately the high fever from it did not least very long.

Outings

I have made the most of the 4 days out of the last 21 where I have been able to get upright by visiting family, having lymphatic drainage massage (from a wonderful woman who is also a healer) and we even popped down the coast. It was especially good to have a little swim in the ocean. It made me feel better all over immediately and I was thrilled to discover that I can still float without my boobs!

Innings

Thank you for the lovely visits, phonecalls, cards, gifts and flowers. My sister pops in often, and I chatted to some relatives who visited Mum and Dad. Also muso mates have come to visit me. One lives just around the corner, and he has popped in twice - once to deliver a wheat-free orange cake (with sauce) and again with some wheat-free apple crumble. How lucky am I? Even with yucky old thrush mouth I was temporarily transported into deliciousdum and all my worries were whisked away.

Such sad news about Belinda Emmet and juxtaposed with Kylie’s comeback concert and breast cancer news, stories and terrifying statistics in every magazine and newspaper that I look at. I met 2 young girls today - 25 and 28 - one with ovarian cancer, one with breast cancer -both pregnant.

My husband is feeling the stress of my cancer and is emotionally tired from it all -and I have no doubt that it’s taking its toll on my family. We talk a lot about having a holiday when this is all over.

Future yuck stuff

I am scared of having radiation - I can handle the exhaustion that it causes but I am quite scared of the serious side effects -especially the lung, heart, throat and rib implications -not the thing for anyone but particularly not the thing for a singer and harmonica player.

I don’t want to take tamoxifen or arimadex or anything like it. I will need to look at getting the porta-cath removed. I don’t like surgery – even minor surgery.

Yesterday, the nurses were strongly recommending that it would be wise to leave it in “just in case”, and come in once a month to have it maintained. These nurses were all milling around me citing cases of people who were pleased they had kept theirs in because they had to come back after 6 months, 12 months, 2 years. I found it quite distressing…

Future good stuff

There’s so many things to look forward to:

We are so pleased that chemo is over -the relief is amazing -and I just can’t wait to get through the next 3 weeks

Final approval of the yurt has been slightly delayed but is expected to happen this week, and it is still feasible that it will be built by this xmas. This will be a really good project for us requiring physical work and creativity

I am planning a comeback concert of a kind -if Kylie can do it, so can I. Kev and I want to put on a special night for our family and friends. We want to have special guest artists. We imagine it often.

Recording and performing with the KarismaKatz -such a joy!

I am looking forward to visiting many friends and relatives that I have meant to visit for many years but have always been too busy.

I am looking forward to feeling energetic and getting back to work and to exercising to build up my stamina and muscle tone. When I commenced chemo, I had a very strong image of myself being enviably healthy and strong. This image became increasingly difficult to see in my mind as the treatment made me weaker. I can now start to believe that I will recover.

In late December 2006 my best friend of 36 years visited. Around the time that I was getting my boobs cut off, she was getting hers 'enhanced'.

6 October 2006 - almost half-way and hanging in there!

I have survived chemo number 3 which means I have made it to half-way. On Monday 9 Oct I’ll get hit with the 4th dose, so all being well, the 6th and final dose will be on 20 Nov. Then I’ll consider whether to have radiation or not.

Since my last email I have been a very social girl, squeezing in as many outings as possible in the short time when I am feeling half human between treatments:

I have had some lovely outings and visits from friends and family.

The Virgo birthdays of family and friends were a lot of fun. I even plastered on the makeup, donned the wig and sang with the ‘Katz at one party, completely exhausting myself but it was oh so good for the soul!

Snuggling up and eating choccies on a rug with my son on the banks of the Cotter river.

Jam session at Rose Cottage - more make-up and a different wig, I even played a bit of harp with a mouthful of ulcers, a cold-sore and a runny nose. How desperate is that?

Out to dinner with friends.

And I have had a couple of creative song-writing sessions with Christo. He is very kindly humouring me and my delusions of doing some recording over the next few months.

The really excellent news is that we have a grand-daughter. Baby Krista was born on 21 September - another healthy home birth. They came in for a visit and I got to have a lovely long snuggle. This was very special to me at a time when I'm fighting for my life to hold this dear child full of hope for the future.

The whingy whiny bit

Since the second lot of chemo there is a build-up of lymph fluid down my sides and around my back. The oncologist has never heard of this (nor the other swellings that I get). The physiotherapist is the only person who seems to have some idea of what’s going on. She has given me a doubled over tight stocking to wear from armpit to hips. This helps a bit sometimes.

She has finally referred me to a massage therapist experienced in the right type of lymphatic drainage. Anyway the whingy bit is that it now hurts to lie on my back, which wouldn’t be so bad if lying on my front or sides was a pain-free option!!!!!! The physio is the only person who has heard of the sensation of a tight band around my chest which is caused by chemo. This is not some post-operative thing. She would like there to be a study done on why chemo causes this. Most of the time it goes away after chemo is finished, but not always….

We had an appointment with the oncologist last Tuesday. Even my poor husband felt sick being in that place. The oncologist said that I’m “breezing through it” and that “the treatment will be over in the blink of an eye”. I reckon all oncologists should have a decent dose of chemo themselves then they wouldn’t say such stupid things.

I am dreading the next chemo. Every treatment seems to knock me around more, and I don’t feel up to getting another dose of the stuff. It messes with my brain as well as my body. I’m being as active as possible. Unfortunately most of the activity is in my head. I think of so many wonderful things to do, people and places to visit, songs to sing, tunes to play, projects to undertake, pictures to paint etc.

I received a very upsetting phonecall from a ‘friend’. He was telling me repeatedly to ‘keep breathing’. I wasn’t having difficulty breathing. He was paranoid that I was going to die. I figured that perhaps he is terrified of dying of cancer. We have installed an answering machine now. Sometimes I feel brave enough to answer the phone but it’s good to have the machine there to screen.

My only feelings and thoughts are of living. The only time that thoughts of death enter my mind are when other people put the idea there. It temporarily upsets my equilibrium when this happens. Fortunately it doesn’t happen very often. I am so lucky to be in the safest place possible, with lots of love and support from caring and wonderful people. I am continually amazed at how my family puts up with me. And I am so often touched by the lovely messages, gifts and gestures I receive. It’s not possible to fully express my gratitude. I can’t wait to give and receive big full up-close hugs without pain.

I’ve added Australian Idol to my list of tasteful TV viewing. It’s keeping me amused on Sunday evenings, and my verbal outbursts keep Kev amused, so it’s working well for us.

Thank you to those who are keeping me up to date with news from outside the chemo zone - it really helps me to keep a perspective on this craziness.

28 June 2006 - Home with anaemia and drains

I was in hospital for longer than expected as I lost a lot of blood and my hemogoblin levels were quite low. I was very well looked after in hospital despite the nurses being completely overloaded most of the time. I was discharged from hospital, anaemic -breathless and dizzy; with about 100 stitches on the outside and a lot of bruising, swelling and tightness; and awkward, leaking, uncomfortable drains.

A community nurse comes every day to check the wounds and drains and change dressings etc as required, and my parents and husband take good care of the in-between maintenance stuff.

My family is thrilled to see my shoulders straight for the first time in years.

Freaky wierd stuff

I have some rogue forces visit me, uninvited, at night. One in the hospital invaded every lovely image I had and turned it into something dark and menacing. All I could do was stay awake that night.

Then at home, one made a feeble attempt at convincing me that male energy was evil. To this I replied that while my breasts had attracted some negative male attention in the past, the first people to visit me in hospital (besides my family) were my male friends, then I named every male friend I know, and with each name the unwanted guest moved a foot away from me and on hearing my son's name, my father's name and Kev's name, it quickly retreated down the street. It has not and will not return.

The second visitor was scoffing at my belief in rainbows and angels. I rattled off the name of every woman I know who is thinking of me at this time, and thought of all the strong wonderful women in the world. I made it clear that in my mind, these women are all angels, all supporting each other. I explained that each colour of the rainbow was a vibration of energy, not just beautiful to look at, but each with it's own specific power. And all it needed to do for visible proof of rainbows, was look at the flowers in my room, where all the colours of the rainbow could be seen.

I somehow turned all the colours into a beautiful white around me and this second 'thing' retreated too and has since left me alone. The next night I had my first long peaceful sleep.

I can't complain, my husband has been so crook with the flu, my Dad with a chest infection, and my Mum has been throwing up! I am pleased to report they are all on the improve now.

Anyway, that's a summary of my little world at the moment. I can't wait to get back to singing, playing harp, exercising, socialising etc.

7 July 2006 - my world is shrinking

Incredibly, cards and flowers and good wishes continue to arrive. This is truly wonderful and overwhelming... My world is shrinking and I am somewhat consumed with my health matters and getting through each day just now - I'm sure it will pass as I get better...

I've been to the hospital about every second day dealing with the pesky drains. It's a good thing we live close by! This new drain is doing a pretty good job (despite it sticking uncomfortably out of my back) and I have been the source of discussion and observation with some nurses at TCH who “have never seen anything like it”. I think they mean the high level of swelling and bruising - anyway, it's a good thing I don't mind being the centre of attention!

The good news is that my hemoglobin levels are improving rapidly thanks to the iron supplement given to me by my friend and lots of good food prepared by my immediate and extended families. I have found out from the surgeon that the lump in my breast had almost doubled in size in the 5 1/2 weeks from diagnosis to surgery (no bloody wonder I was anxious to have it removed - I swear I could feel the bloody thing growing!!!).

Also, I had 19 lymph nodes removed and 9 of them were 'involved' (cancerous in other words).

I have had my first physio appointment - the therapist was pleased with my progress. I have an appointment next Tuesday with the Oncologist. I imagine she will recommend a treatment regime.

I am looking forward to regaining the full use of my arms again. I'm so fortunate to have people to help me with dressing etc. until I am recovered.

I am hoping to be able to attend my benefit night on 29 June and maybe even singing a song or 3 - I just have to wait and see.

Please feel free to visit or phone - any news from 'outside' would be most welcome at this time. My dear husband could do with some cheering up too - he's been under an enormous amount of pressure for many months now and is starting to feel the strain!

24 July 2006 - a strange parallel universe

Please excuse another generic email but I’m spending a fair bit of time sleeping and my arms hurt so I have typing constraints making it almost impossible to respond to everyone individually.

I remain consumed in my little world - a strange parallel universe. I have had some outings besides the hospital - I even drove the car for the first time since the op but I don’t think I’ll do that again for a while…

I had some scans and they came back all clear. This is what I expected of course but it’s re-assuring to have it confirmed in writing.

I had a little operation last Thursday to get a type of central line (called a porta-cath) 'installed' under the skin in my chest. Unless I have a drastic change of mind, I will be starting a course of very heavy-duty chemo on 4 August. All going well, I will have 6 courses of the relatively new brew of toxic cancer cell killers, administered over 5 hours, once every 3 weeks. I am bloody terrified of the stuff so will work on improving my attitude to it over the next couple of weeks. I will definitely lose my hair 10-14 days after the first dose. This seems relatively inconsequential in the big scheme of things as does the possibility of feeling nauseous. I really hope that my fingernails stay on my fingers, that I don’t get a mouth full of thrush ulcers, and that I don’t die from a horrible fever / infection.

They took out the drain so they could do put the portacath in. The fluid is building up again so this means more trips to the hospital to have it aspirated. Oh the joys!

Bethel, the breast care nurse visited today to show me some sample prostheses. (Try saying that sentence with a lithp). This was a fun and informative visit. My parents and sister continue to be wonderfully supportive, as does Kev. He is having a month off work which will benefit his wellbeing. We are planning to get away from Canberra for a night or 2 before chemo starts.

The Canberra Blues Society is hosting a benefit night for me this Sat 29 July - how fabulous is that?

Thank you again for your support, visits, messages etc. I wish I had more interesting news...

6 August 2006 - overwhelming generosity and first chemo

Firstly, for those who didn’t attend the Canberra Blues Society’s benefit night last Saturday, it was a blast! And to those who were present, thanks for the robust Minnie the Moocher chorus singing! It was such a well-organised, uplifting night. The generosity and support really boosted my energy levels and lifted my spirits. My family was very impressed and grateful also. And it was such a thrill to play with the fabulous KarismaKatz again. I was determined to stay to the end and managed to do so, even getting up and having a dance with my husband at the end of the night. I received many kind words and gestures, not only from people I know, but from complete stranger! It’s amazing what a good vibe and a few drinks will do! The generosity (not just in financial terms) will go a long way to providing my family and I with the strength and courage to face the challenges ahead with a healthy mind, body and spirit.

We had a little trip away to the south coast. The weather was gorgeous and we ate and slept well and really relaxed. On the second day, we cut my hair really short out on the porch with a gentle breeze blowing. It won’t be so messy when it falls out now. I’ve been diligently doing the physio’s prescribed exercises (plus others that I’ve made up myself). I have increased the movement on my left side considerably, but still can’t manoeuvre myself into ‘non-stretchy’ clothes. My scar is healing, and the swelling is very slowly but surely subsiding.

I had my first lot of chemo on Friday, and I’m still alive!!! I had a minor reaction to one of the drugs (some hives appeared on my neck and tummy) but besides that, it was a trouble-free (but very long) day. And by the way, the porta-cath worked fabulously. I saw so many nurses struggling with patient’s veins. I continue to take my many supplements.

The oncology pharmacy said a number of them would ‘interact’ with the chemo drugs, but he was not able to tell me how the supplements in questions interacted or any valid reasons not to take them.

So this is day 3 of chemo for me. The biggest problem is swollen lymph nodes in armpits and groin (they're freaking out I reckon trying to cope with all the toxicity and I will probably have to see a doctor about it tomorrow), red face and chest, and being bloated (like when I eat something I'm intolerant to).

There was a good band on Sat nite with a really hot harp player that I really wanted to see, but they didn't start until 9pm so it was a bit of an ambitious idea....

My immune system will be severely compromised so please visit only if you are healthy. I would love to see you.

1 September 2006 - the month's ahead seem daunting...

Your messages, cards and visits go a long way to getting my mind off my miseries!
The Good:
I haven’t thrown up
I can still eat and drink
I’ve still got my finger and toe nails
My son visited me today
He turns 18 next Thursday
My family is the best. The Folk Society also raised some money for me, out of the blue - I am amazed!
My husband has been massaging my feet, tummy and back often - it is b l i s s
I’ve had some lovely little out and aboutings
I found a good GP in Canberra (my previous one was in Bungendore).
I walked down Preston Street and back today.
Re-scheduled next chemo from 15 to 18 Sept so I can enjoy some of the Virgo birthday celebrations of family members and friends.
I was thrilled to have some visitors today.
I will not feel crappy forever.
Decision made with Mum and Dad to build a yurt in the backyard.

The Bad
I haven’t sang for ages.
I get puffed playing harmonica!!!
I miss gigging with the ‘Katz.T
he months ahead seem daunting.
I’m still having difficulty with the concept that this treatment is healing me.
I haven’t been able to do as much of the physio exercises as I need to.
I haven’t been able to send all the thank you letters that I want to.
I’m losing weight - this is not good. Muscle tone and stamina are disappearing with it!
My sense of humour went missing for a while.
Mouth ulcers, bad breath, sore eyes, extreme fatigue, aching muscles, remaining lymph nodes going mental, nightmares.

The ugly
My hair has gone. Almost all of it from my head, and about half of it from most other places. I reckon I look like an alien. My son concurs. The rest of the family try and convince me I look beautiful.
I have 2 gorgeous wigs - one is a cheeky reddish shortish one, the other is a long brunette with a fringe and slight wave similar to what my hair was like as a child. They are both itchy and hot.

The Worserer
I have a staph infection in the armpit, which is being treated with really strong doses of antibiotics (in addition to the usual antibiotics I have to take). I’ve been watching Dr Phil and Days of our Lives. The combination of chemo, steroids, antibiotics and anti-nausea drugs are messing with my guts - diahorrea, constipation, cramps, bloating, wind, indigestion, plus constant motion sickness - but I have not thrown up!