Well I finally broke free of the hospital. Came home yesterday afternoon and this morning I found it quite strange not doing things to a timetable and having to think about what I wanted for breakfast. (after having to fill the hospital menu sheet in the day before and being stuck with limited choices).
The days at the hospital weren’t too bad interspersed with visitors and drs rounds and talking to my room-mates. D in her late 70’s and T in her late 50’s. We all agreed it was a good room to be in because we got on quite well. Had fun playing ‘500’ one night with OH (I had got him to bring up some cards) and sis M bought me a new sort of card word game called ‘quiddler’ and she and I had great fun playing that on Saturday afternoon.
I didn’t sleep well on Friday night and resorted to sleeping pills on Saturday and Sunday nights. For some reason I couldn’t get to sleep, my brain just wouldn’t turn off (I wasn’t particularly worried about anything or in pain) and I finally nodded off about 1am which would have been fine if I hadnt been woken for my obs (blood pressure etc) soon after and my IV antibiotics at 4. After going to the loo at 5 (which I had to record as I had been a bit dehydrated when I came in and they were measuring intake and outflow so to speak) I hopped back into bed, grabbed my cellphone to check the time and also use the light of my phone to write by, and dropped my phone on the floor.
I picked it up AND THE SCREEN WAS DEAD – AAAAARRRRGGGGHHHHH!!!!!!!!! As it had been my lifeline as I had basically been stuck in the room due to my blood count, I was pretty upset. I waited til OH had woken up and then rung him -my phone still worked I just couldnt read anything on the screen and I knew his cell no. off by heart. The sweety that he is, he went out and bought me a new phone and delivered it to me on Saturday afternoon. I charged it overnight, and learning my way around it kept me occupied for most of Sunday. I unfortunately had not written down some of my numbers OOPS!!, managed to get most of the family ones off OH, OD and Sis M but was still missing some – so if you are one of my friends reading this and you have my cell no. txt me and let me know who you are if we havent been in contact since Friday.
my morning cocktail
I’ve written post-it notes to myself and stuck them on the cupboard in the kitchen where our medicines are kept so I remember the order that I have to take the medications that I got sent home from the hospital with. (breakfast, lunch, dinner, and bedtime are all different combinations.) see photo for my morning cocktail of pills. I was joking with one of ODs friends that not only am I a pill popper, when I have chemo etc I’m mainlining my drugs.
I am in the healthy range now for my white cell count but I am being a very conscientious patient and not rushing out to do stuff. OH, MD and I are going away for the weekend to Taupo and I want to be at peak wellness for that. My white cells improved dramatically once we hit the end of the 7-10 days post-chemo that is the bottom of the curve for my white cell count.
One of the reasons we are going to Taupo is that this is the weekend MD can visit her Soulja Boi in Waiouru but she can only see him for a few hours on Sunday afternoon. We will leave on Friday afternoon, spend Friday night and all Saturday doing stuff round Taupo. On Sunday we will make our way down to Waiouru (about an hour or so south) drop MD off for her visit and OH and I will probably spend the afternoon in Ohakune. We will pick MD up and then drive home Sunday night. I am really looking forward to it as especially I missed out on a lovely dinner at Euro (expensive restaurant in Auckland – OH work related dinner) last night.
Posted by jaydub26 on September 29, 2008
It’s 6:20 am on Friday and I have just seen the sunrise out my window. Looking towards the domain gates the sky was all orange and pink over the trees – very pretty!
Well I’ve been in hospital for two days now and getting used to the idea that I will be in for a couple of days longer. I didn’t realise how bad I was feeling until I felt is much better. It was such a gradual slide from tired to very tired to sick that I didn’t realise until it got bad.
The next day after the IV antibiotics had started to take effect I felt so much better. I haven’t run a temperature at all but they say that sometimes when your white blood cells are low your body isn’t actually fighting infection enough to actually cause a fever. The reason I am in hospital is my white blood cell count is too low to fight the minor infection that I have in my portacath incision and I need IV antibiotics and injections of GCSF to boost my white blood cell count. I’m learning lots of new medical terms like how white blood cells are called neutrophils and when you are low on them you’re called neutropaenic…
I’m being a very impatient patient – the enforced bed rest (captivity!) will probably drive me nuts before I leave. I’m not allowed to go for too much for of a wander or anything because I’m not allowed to expose myself to unnecessary germs – for the same reason, OD hasn’t been able to visit me, as she’s a bit sniffley. My first day was spent in a mixed room that had men and ladies in it and I was in a bed closer to the door with the curtains shut half the time. Yesterday about tea-time, I got shifted to a female-only room and I have a bed by the window so feel a little less claustrophobic.
Part of me is having trouble with the fact that my life has changed so dramatically in the last two months. The person that has to resign herself to being in hospital seems a long way away from the pereson I was at the beginning of July before all this started. I have to learn not to get too busy on my good days. I probably overdid things on my first chemo cycle and that is why things got on top of me so quickly this time.
I had hoped to work during the third week of this cycle but that’s now doubtful. I was just going to work one shift on a non-busy day just to see how I went but I am going to have to flag that away and just concentrate by getting my strength up before the next chemo cycle.
This afternoon MD and YD are coming up to visit me. We thought that it would be better to show YD that I’m fine (well, relatively speaking LOL) and I’m not too sick and there’s nothing to worry about rather than have her stressing that I’m too sick to see her. Part of me feels guilty about being in here (stupid – I know!!) but the fact that OH et. al. have to come up and visit me instead of us all relaxing at home just bothers me.
I’ll probably write another missive from the hospital if I’m in longer than Sunday (I get to go home once my white blood cells start rising again) and I’ll get OD to type it in again. Thanks to OD for typing out for me on the blog and for being able to decipher my handwriting enough to do it (note from OD: I’ve had almost 21-odd years of practise!).
Posted by Natasha on September 25, 2008
Hi all, it’s OD here, tapping this entry in for Mum because she doesn’t have computer access. She’s got an minor infection in the incision where they put her porta-cath and because of the time of her chemo cycle (she’s got a very low white blood cell count right now) they’ve taken the precaution of putting her in hospital on IV antibiotics which also puts her out of the reach of everyone else’s rancid germies… she has enough of her own right now!
We expect to have her home either tomorrow or Friday, and for to resume her regular posting then.
Posted by jaydub26 on September 23, 2008
going bald on top last night
This round of chemo has made me more tired than last time – the good news is that my nausea is much less than last time and being totally managed by the anti-nausea meds. I will probably actually feel sicker tomorrow when the flu-like syptoms kick in (the aches and pains etc). I have slept for 12 hours each night (Friday & Saturday) and also had a 2hr sleep late yesterday afternoon, so I’m sleeping about double what I normally sleep. OH and I are usually night owls but I’m definitely not at the moment. Even sitting here having had 12 hours sleep and being woken up at 9.20am by the next door neighbours making noise, I feel I could quite easily fall back to sleep again, but if I’m not up now for my breakfast all my meds, (antinausea, steroids and pain meds) get all out of kilter.
My hair is definitely thinnner but I am still relatively unself-conscious about it.
Where they put my portacath in has just got a steri strip by my neck and a couple of steristrips by my port site – will put on another pic of that when the bruising has faded a bit more.
thinning on Wednesday
Posted by jaydub26 on September 20, 2008
Well In the last two days my hair has definitely decided to leave my head. the grey ones wouldnt you know are the ones that are the most stubborn at hanging on. I can pull several hairs out of my head at a time. It doesn’t hurt it’s just itchy. My hair is much thinner than it was when I got it cut on Saturday, and I am seeing more of my scalp than I have since I was a baby. I am intrigued to see whether I will go completely bald or some hornery tufts will stubbornly stay. Had a quick word with the hairdressers today and will probably go in a couple weeks to have any remaining hair taken down to a no.1 cut.
I went out today and picked up some more DVDs because I know that the next couple of weeks will be best spent taking things quietly. I hope the third week will let me get out and do a few things maybe even work a shift at work if I am up to it. It’s a pity in a way that this week was taken up with my portacath op and recovery from that – because other than the pain and discomfort due to that, I have felt pretty good.
The Wednesday before each chemo treatment I have a oncology assessment appointment. This is where I see my oncologist or one of his team. I am lucky to have been able to be put under the care in the public system of the oncologist that I saw privately. Before my first chemo I saw one of his team but yesterday I saw Dr H himself. He gave us a bit of good news in that he thought that the lymph nodes in both my neck and armpit were less prominent than they were when he first saw me. The other couple of interesting things that happened at the appointment were that he got me to sign a form to allow my case to be entered into their case studies. Apparently they have been collating data on different cases from 2000 to the present and are starting to be able to analyse it to see what is working with treatment etc. The other thing was he had a med student sitting in on the appointment. Because IBC is so rare he asked me if the student could have a look and feel of my breast so that he could see what it presents like. I am starting to feel very unselfconscious about my body and felt that it was fine. I feel if it helps the med student diagnose someone else correctly and rapidly with this then it’s all for a good cause.
I am not feeling too self-conscious about my hair falling out either. I wear my hats most of the time that I go out and I think people are more uncomfortable seeing me than I am with them seeing me. I am not going to shut myself in our house so I think people will just have to deal with it.
Tomorrow morning I have my 2nd chemo treatment. After this treatment they will take the tubes, tapes and bandages off my chest and all you will be able to see is two little incisions. Next time I have chemo they will just put a needle into the port.
Will probably write to my blog on Saturday and let you know how my chemo went. I have to start taking the steroids and anti-nausea meds again so have to remember my schedule where they are concerned.
Posted by jaydub26 on September 17, 2008
my hair – Saturday morning, thinning
feeling my prickly hair
how they plug me in
Sorry I’ve been too busy since my haircut to do an update. After psyching myself to lose my hair, and my whole family psyching themselves for me to look terrible with virtually no hair, we were all really pleasantly surprised how much we liked my new haircut. Even YD liked it – although she couldnt stop giggling at my haircut. All in all, a very positive response. OH is definitely having the most difficulty adjusting, he’s missing his darling with long sexy curly hair but would rather have me bald and flatchested than not at all. I’ve not felt very self-conscious at all going out in public even without a hat. Although as my hair thins more and falls out more the hats will come in handy. I’ve “only” got ten hats and OH thinks I’ve got enough!!!!!! LOL
Admittedly I did need a few glasses of wine (3) to get up the courage to cut it but even sober I’m quite happy with my hair.
Yesterday I took YD out to Maraetai, we had an early lunch at a cafe,and then walked along the beach. I definitely needed my hat on to keep my head warm in the breeze. In the afternoon OH and I visited my M-i-l with OD and YD. She also got a pleasant surprise when I pulled my hat off and she actually liked the way I looked.
Today I had to be up at the hospital 9am for my portacath operation appointment. Of course that meant lovely motorway rushhour traffic with the obligatory nose to tail crash to jam the works up. Which meant we made certain we left home with plenty of time to get to the hospital. They did an ECG before the operation which showed everything was fine so I hope they don’t keep insisting I need them all the time. I am getting a good idea where everything is at Auckland Hospital, seeing they had to take me down to the cardiac department for the ECG. They have left the external tubes in, as you can see in the picture because my next chemo is on Friday and as the operation site is still going to be a bit tender – they thought it was better to leave the tubes so they won’t have to poke and prod me at all!
I have a small incision site on my chest and another by the jugular vein in my neck – the tube (catheter) was inserted into this vein there then fed under my skin to my chest where they inserted the port (metal reservoir with silicon seal) just under my skin. I was feeling very tired and sore when they sent me home but getting back to feeling normal tonight. It probably looks worse than I am actually feeling now.
I guess I am more looking the typical cancer patient now – hat with little or no hair, surgery tubes, etc, but surprisingly I still feel like myself when I look in the mirror. I am actually even surprising myself how unselfconscious/happy I feel with myself and that has got to be a good thing.
Posted by jaydub26 on September 14, 2008
Have just been to my preadmit appointment for my operation to put the portacath in on Monday. While I was there they sent me over to the main Auckland hospital building for more bloodtests (to check whether or not my white blood cell count had come back up again from bottoming out last week). After having the blood tests I left the hospital and came back home. I had just got back to Papakura and I got a phone call from the oncology department asking if I was still at the hospital. They had decided between the time I left them and the time I arrived back in Papakura that I needed another ECG done to check on my heart. The doctor hadn’t said anything about it when I had seen him. They wanted to give me another appointment for getting an ECG booked before I was due at the operating admissions but I couldn’t tell them when that was going to be as we were supposed to wait until 2.45 before ringing the operation direct admisson line to get our time we had to be there for the operation. I said I would ring them back when I knew what time my operation was. After ringing and finding out that time was 9am – when I rang back the oncology they said because it was so early I could just get the operating people to do it before my op. Needless to say all this needless backwards and forwards phone calls have left me a little brassed off and frustrated. ARRRRGHHHH!!!
Tomorrow is when I get my haircut and I popped in to see the hairdressers to check everything was still all ok for tomorrow, and had a quick word to A (the hairdresser) about how short I am going. My hair is not falling out in big chunks yet but I am definitely “shedding” a little more than before. I am going to go for a “number three” cut or possibly “number two” will decide which for certain when I see myself tomorrow. I am going to be wearing hats over it anyway so it doesnt really matter if I even go to a number 1.
OD’s friend M, that gave me the bracelet, gave me another present yesterday a lovely little pink bible (yep you can get a breast cancer themed bible now!) Its very sweet of M and it’s actually got a guide in the front of verses that will help you through the tough times. Thank you M
Posted by jaydub26 on September 11, 2008
I haven’t updated the blog for a few days -when I started feeling better I started to go out more and yesterday it caught up with me so I had a PJ day yesterday. Feeling 100% better today for having had the rest.
On Friday went out to have a blood test (to check my blood counts) do some errands and spent some time “annoying” my workmates. On Saturday OD and I went to the Craft market and I bought myself another couple of hats. We then went out for lunch and did grocery shopping. On Sunday it was Father’s Day and YD was home for the day. We took OH out for lunch and shopping. I bought another hat. later that day I recieved a gift from OD’s friends M&M which was another hat (purple and sparkley-thanks M&M) which meant my hat collection doubled in the space of two days. OH commented that he thought that I had enough hats. My response was that “A bald women can never have too many hats”.
MD’s boyfriend intake date for the army got moved up which means he got his haircut on Sunday. We’ve decided to call him “Soulja Boi” in this blog from now on. On Monday morning MD and I saw him off on the Army bus.
On Monday afternoon I had an appointment with the private breast clinic that I first went to to get diagnosed. This was a preliminary visit with a breast surgeon to see what my options are in a few months time. I will probably go privately for my breast surgery even though I am having my chemo and radiation in the public sector. The reason for this is that I need work done on my left side as well, which will probably not be able to be done under the public sector as it will be regarded as cosmetic rather than medical.
Those of you who know me know that I have rather large breasts. In the public system they would take off my right breast but do nothing to my left. As my right breast is never going to be reconstructed to a G cup (shock horror – now you know!!) I need to have my left breast reduced. – I’m thinking a nice C-D cup. My right breast won’t get reconstructed straight away, with IBC (Inflammatory Breast Cancer) they recommend waiting for at least two years. I may decide to remain right side flat for the rest of my life and just use prosthesis for illusionary purposes. I am glad I had this appointment because it means it gives me time to think about what I really want in the way of surgery rather than having to make snap decisions in a few months time.
As you can see I had a pretty busy few days. In hindsight I probably shouldn’t have done quite as much and yesterday I deliberately stayed in my PJs so that I would stay at home and not do anything. I had a bit of a nagging cough – probably from getting wet seeing Soulja Boi off on Monday. I feel much better today and am glad I sat playing computer games on the couch yesterday.
I am about to go out for my usual weekly afternoon tea with YD so Cheers
Posted by jaydub26 on September 9, 2008
I have just written a post on the “what do we tell YD?” page and it made me realise that part of the reason we told her is so that I controlled when she was told and what. This is also the way I am dealing with a lot of the other aspects of dealing with Gertrude. I have decided when to shave my head rather than waiting for it to fall out, and on Monday I have a appointment with the breast surgeon to discuss prelimnary decisions around my surgery in a few months time. I have realised I am a bit of a control freak about the small things becasue I can’t control the situation itself.
I am still feeling a little fluey but a lot less tired than I was, so I am going to go out today and get out of the house for a few hours – hopefully the weather will hold.
Posted by jaydub26 on September 4, 2008
today was more of the same flu-ey symptoms as yesterday. I am still very tired but curled up and watched a movie on my new TV/DVD this afternoon then had a little sleep and feel much better.
the cupcake fairy visited me today aka K one of OD’s childhood friends. She cooked me cupcakes and couriered them overnight from the North Shore. It was such a lovely surprise to open the box and find 6 beautiful cupcakes. Thank you K
Posted by jaydub26 on September 2, 2008
Have just had the liaison nurse from the Cancer Society visit. It was nice to be reassured that all the little niggles and pains I have got are totally normal. My nausea has eased but I feel like I have got the flu or something – very achy legs/joints and feeling really tired. There are also other weird side affects as in my eyes taking longer to adjust to shade after being in the sun – have to wear sunglasses more often. (I am having to be a lot more sensitive/sensible about my sun exposure)
I feel really proud of myself – I went out this morning and did a couple of errands and some shopping -then came home and made myself a ham and tomato toasted sandwich – first time I have felt like “cooking” since Friday.
I have made contact with an IBC (Inflammatory Breast Cancer) support network based in the States. MD first made contact with someone via a clip on “YouTube” about IBC. I am realising by reading other people’s stories just how lucky I was to get diagnosed so fast and treatment started straight away. This has given me a lot of hope that there will be a positive outcome to this treatment.
I am going to try to cook dinner tonight but will probably go to bed early after that.
YD moves to her new house today with all her housemates so have to ring after dinner and see how that has gone. We will probably have her around for dinner on Thursday night, as her and her dad are due for their usual date for haircuts. It was supposed to be last week but OH forgot with everything else that was going on. I have actually ordered a couple books from the internet that we think will be useful resources explaining this situation to YD
anyway time for my nap 🙂
Posted by jaydub26 on September 1, 2008