| 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 stiches 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 strangers – 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 intollerant 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
The Bad
The ugly
The Worserer
and there's more... |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| singer | songwriter | blues harp player | breast cancer survivor |