Well, this post is going to be pretty long to get you up to date with everything that has happened.
The reason I gave this the title of ‘complacency and curveballs’ was that I was feeling quite complacent 2 weeks ago – everything was starting to fall into place in regards to radiation and surgery, and I was pretty organised for Christmas too.
– appointment with my private surgeon -portacath had been looking a bit pink and tender since the night before but I felt fine. Had a good appointment with surgeon as regards surgery and what will happen with Gertrude and left boob (removal of benign lump in and reduction of the left at the same time as complete removal of Gertrude (right boob) and some associated underarm lymph nodes) She (the surgeon) did an ultrasound of both to see where things were at – Gertrude is still showing a reasonable amount of congestion. While she was doing the ultrasound of my left boob she noticed the portacath looking a little pink so ran the ultrsound over it while she was there – portacath was implanted just above my left boob. She was worried by a pocket of fluid that was under my incision scar so called in one of the other surgeons at the clinic who does portacath operations – he also didn’t like the look of it and recommended that I was prescribed some antibiotics and that I popped into acute oncology when I was at the hospital the following day for them to have a look at it. Because it wasnt that sore and I didn’t feel off colour the way I had the last time I didnt think it was too serious.
– rung the hospital and checked when they thought I ought to come in to acute oncolgy (i.e. before or after my radiation appointment) they said to pop in before I went to radiation (same hospital, different building) Not thinking that it was too serious I drove myself in and went to acute oncology they looked at it took blood tests and then it was time for me to go to my radiation mapping and simulation. They said for me to come back to Acute oncology as they would have the results of my blood tests but it was likely that I may have to be in overnight,
Radiation mapping and simulation – this is where they set you up for your radiation, they get you to lie on a CT scanner bed with your hands up above your head holding onto little handle bar contraption they have little cushions and wedges that they put in exactly the right place so you dont slide on the bed. They do CT scans to check that the organs they want to radiate are in the right position, with little metal wires and tags being taped to you to give the dimensions of what they want to radiate. they also draw on you with marker pens during this time too. When they are satisfied you are in the right position they then tattoo 3 dots on you one on each side under your arms and one on your sternum (these dots are smaller than a pin head but I joke with OD I now have more tattoos than she has (she has a butterfly on her back). These tattoo dots are to ensure you are correctly lined up in the radiation machine each time (they line the dots up with laser cross hairs). There was some concern about whether or not they could tattoo me as they had had a call from acute oncology saying if I was too neutropenic (low white blood cells) they wouldn’t be able to do it. Luckily I was cleared to have the tattoos otherwise the mapping would have had to be done again another day. My radiation therapy starts on the 9th of January
Also while I was in radiation I was asked by my radiation oncologist if I would help prepare the radiation oncology registrars prepare for their final exams to become specialists. Basically this consists of me being their test subject and being examined and questioned by them each individually (one on one) and then them being quizzed as to my condition and how they would treat me. Given the rarity of IBC I am quite willing to be their test subject so if they ever have to treat another woman with it they will be better prepared. I’ll do this in a couple of week’s time.
After they had finished with me at radiation I headed back to acute oncology where it was confirmed that I needed to admitted at this stage they were hopeful it might only be overnight or perhaps a couple of days at the most. By this time I had organised OD to drive OH up to hospital so he could pick up the car as it was obvious I wasn’t going to be driving myself home that night.
To make matters even more interesting Soulja Boi proposed to MD today and they got engaged and I had to hear about it in a phone call rather than being at home celebrating with them.
Not the way I had planned Christmas Eve – I was allowed to wander around the hospital in between IV antibiotics and doctors rounds, I am slightly neutropenic, which is unusual for this time in my cycle my lowest point is usually days 7-10 and by day 13 I am usually heading back up into the normal zone so yesterday and today I had a shot in my tummy of GCSF which is like a booster shot to get your white blood cell count growing again.
Thankfully OD knows how to glaze the Christmas ham, and OH was trying to figure out how to cook a turkey, I hadn’t cooked one before either so I could only tell him to follow the recipe that I had been going to follow. He did a really good job. We also had to think about rescheduling the Boxing Day extended family gathering we had planned for our place. Sis T was over from Oz so was looking forward to it being a bigger gathering than usual.
YD had come home for Christmas and was quite thrown by the fact mum was in hospital. MD, Soulja Boi and YD came to visit me in the afternoon as did sis M.
I got told I could go home for Christmas lunch in between IV antibiotics so I am grateful for that.
Feels weird waking up in hospital, rice bubbles for breakfast instead of our family’s traditional bacon sandwiches, missing out on YD’s excitement as she investigates her stocking. OH picks me up at 11am after my morning IV, having them 6 hourly so I have to be back by 4pm. He brings me a bacon sandwich. The girls, YD included have decided that they will only open their stockings and wait til I get home before opening the presents under the tree. I am glad that they are of ages where they are willing to wait. Can’t help but feel grateful that Gertrude didn’t happen until they were all grown up. This would be so hard for a family with little kids. OD’s friend M popped in while we were present-opening and helped OD open her presents – got more enjoyment than OD, who already knew what her large present from us was.
Felt weird being a “guest” at my own Christmas lunch – OH and the girls had organised all the food and decorated the table. They did a really good job too. I had a couple of glasses of bubbly and a phone call from my bro and then it was time to head back to the hospital.
YD definitely feeling the strain of me not being home for Christmas, the family is invited out ot my sisters for lunch to make up for cancelled dinner at our place and so they go after having me get on the phone to YD and tell her that it is ok that they go without me. She was sure that they shouldnt go if I wasn’t going but I managed to convince her that it was ok. MD and YD came to visit me afterwards.
Starting to realise that they aren’t in any hurry to let me out of hospital. they are keen to carry on with the IV antibiotics as it doesnt seem to be clearing up very fast, there is also some talk about the portacath having to come out. they have drawn a line round the inflammation/infection, although it has improved it is not subsiding as fast as they would like it to. I give the drawing the nickname of “my little rabbit” as that what it looks like to me when I look in the mirror. The ends of the incision scar look like eyes, the portacath itself like a nose/mouth and the lines following the inflammation up the tube like ears. You cant see it so easily in this photo but trust me it was a lot like it
"my little rabbit"
The antibiotic they are giving me is 2g of flucloxicillin -its irritating the veins in my hands that they are putting it through so they have to find a new vein every 36 – 48 hrs, just wishing it was having more of an effect. The thing is I am not feeling unwell and not too bad other than some tenderness round the portacath site -I almost feel like a hypochondriac being in hospital so long when I am not feeling sick.
A new oncology consultant was doing the rounds today and he confirmed what I had thought from conversations with previous registrars and consultants, they are worried about the infection going elsewhere, to places like my heart valves etc. he wants the vascular surgeons to have a look tomorrow but I already know they are going to say that the portacath needs to come out, I am ready for it to come out – the convenience has been great and I would have loved to keep it in for the rest of my herceptin treatments but its not worth the risk.
OH takes me out to Mission Bay for a picnic lunch in my between IVs “escape time”. Had a little boy keep asking me what my hand was bandaged for (much to the embarrassment of his mother) so I told him the truth ” its to keep my IV line in place so they can give me more medicine when I go back to the hospital” thought if I just told him it was sore or I had hurt it that would just lead to more questions.
Vascular surgeons came round and definitely want to take the portacath out. I will go on the surgery list for tomorrow. Had a busy day between drs and visitors and IVs was kept occupied all day.
Not allowed to eat before surgery but kept busy by a phone call from Southern Cross(our medical insurance) just checking about my private breast surgery – they have already got the letter from the surgeon (even though my surgery won’t be till after my radiation and recovery time – probably middle of April) The good news is that it will be almost totally covered by our insurance so thats good news. I am still on the phone to them when the orderlies come to get me for the surgery.
I am so groggy after surgery and something is said about my respiration so I am put on an oxygen mask and have that on and doze for about 3 hours after coming out of surgery.
When I wake up properly I am in a lot more pain than before they took it out, I cant use my left hand/arm without shooting pains in the portacath site. They have charted all sorts of painkillers including morphine I can have by drip so this sort of pain must be expected with this sort of operation. I managed to get by without the morphine, but used the other high-strength painkiller tablets to help me get to sleep that night. Still on IV antibiotics to round up any remaining “greeblies”
MY birthday- I had hoped to be allowed home today but they want to keep me on IV antibiotics for one more day. And just when I think we have reached the end and I am about to go out to get some birthday tea with OH and OD they come in with the results of my blood tests from that morning. My white cell count is ok but my haemoglobin (red cell count) is low. It had been fractionally low when I came in a week ago but has gone lower and to put me in the best health for starting my radiation they want to give me a blood transfusion. They will give me one unit tonight when I come back from tea and another tomorrow morning, This feels very surreal to me and freaks me out slightly as I dont feel that sick, just sore from the surgery and they are talking about me needing blood transfusions. I feel guilty that I am taking blood which may be needed by somebody more. My mind keeps telling me there is no way I am sick enough to need a blood transfusion and the fact I really do need one is hard to get my head around. I have a nice afternoon/evening out with OH and OD and arrive back at 7pm to sort out getting hooked up to my IV antibiotics and then the first unit of blood(red blood cells only). Because the antibiotics have to be done slowly so as not to aggravate my veins too much it takes about 1 hour – 1 1/2 hours to do. then the blood transfusion takes another couple of hours. We discussed trying to do both lots of blood but it is 12 midnight by the time we have finished the first one so we decide its better for me to get some sleep before my 2am antibiotic and that we will do the last unit of blood after my last IV antibiotic at 8am
I spend all morning hooked up to the IV -first antibiotic then blood with a toilet break in between. Its about 12.30pm by the time we have finished. the registrar has already been in and confirmed I am going home, and that when I am finished I just need to wait for my discharge paperwork to be done and then I can go home. We had to wait for ages for the paperwork and then stop at the hospital pharmacy for prescriptions on the way out so didn’t leave until about 4pm. It felt weird to be home at last and know that I could stay home, still very sore to move left side and need help getting dressed as I can’t lift my arm the right way to do it myself – guess this is what its going to be like after my breast surgery.
First day at home and definitely feels weird. I slept until 11am to make up for all the disjointed sleep in hospital and still felt the need to have another nap in the afternoon. Still too sore and tired to write to my blog so save it for tomorrow.
Still need a little help getting dressed but pain finally starting to subside to more manageable level. Have spent 3 hours this afternoon writing my blog so now we are all up to date. I wrote it in chronological order so to be sure not to leave anything out. Feel free to ask questions if you need any clarification.