Yes, that’s a Dr Suess reference, from there to here, from here to there, funny things are everywhere! Yes they are and I seem to be seeing Dr Suess quotes a lot lately. Rosie has always been a little obsessed with his books and they’re definitely a fav of mine to read as they roll off the tongue so easily.
Once again it’s been too long between posts. Argh! I have never had such a full calendar and I wonder what it will feel like once I’m done with all the treatment and tests and appointments. Will I feel a little lost or thankful for all my free time? Probably a bit of both I suspect. It will be glorious to be able to spend more quality time with the girls without feeling so tired and worn out. On the other hand treatment will be finished and it will simply be a waiting game until each check up with my team of doctors. Waiting for what though? Bad news?! No, I can’t allow myself to simply wait around for bad news. Only good news and good times ahead once treatment is finished!
So my last chemo was on 21 March and it ended very unceremoniously. It was meant to finish on 28 March but in the final countdown to “the end”, my neuropathy became much worse and I started wondering about what the repurcusions might be in having that final round of chemo. To make my decision that much harder, Dr N, my oncologist was on a well deserved holiday and I couldn’t make the decision without further direction from her. She had said the week prior if it started interfering with my day to day life then perhaps we wouldn’t do the final chemo. I was on my own, or so it felt initially. I started doing some research online and reading forum posts about other people’s experience with the chemo Pacitaxol and peripheral neuropathy (damage to the nerves of the peripheral nervous system). What I read was a bit scary and very concerning. Mine seemed to have progressed very quickly over the two weeks prior and was getting worse by the day. Some people had balance issues and had trouble walking! Others had real difficulty using their fingers. I needed to discuss this further with my medical team and perhaps another patient who’d been on the same chemo as me. I spoke to the clinical trial nurse, a nurse at the Cancer Council helpline, a lady who had been in my mindfulness group and had also been on the Taxol plus the doctor filling in for Dr N. I also thrashed it out with many of my family members. It was an extremely tough decision and a stressful few days but in the end I decided not to go ahead with the final round of chemo. A decision I’m very happy with at this point. My fingers, hands, toes and feet have all been affected. At that stage I was getting pins and needles in the balls of my feet and down my hands, plus sometimes up my legs and arms. Thankfully it’s now only my finger tips and toes that are still affected most of the time with the hands and feet occasionally, depending on how they’re positioned. My toes sometimes feel like they’re being pinched in a pair of high heels. I find it difficult to bend down with the girls, propped up on the balls of my feet and toes without instant tingling and a bit of pain. I’m having trouble doing normal things with my fingers that were never a problem before. Small things but still slightly annoying. It had progressed so quickly during the last two weeks of treatment that I feel pretty confident it could have gotten a whole lot worse if I’d gone ahead with the final treatment. My only concern now is whether I’ll ever get full feeling back in my finger tips and toes. Apparently it can keep getting worse, worsen in the future or go back to normal. I suppose I’ll just have to wait and see what happens. It will just have to be another thing I’ll get used to over time. Not woe is me as we all have things we have to deal with, the key is acceptance and not letting these things overwhelm us or let them become bigger than they are. At least I still have fingers and toes.
So that was the end of the chemo and I’m happy it was so unceremonious. I didn’t have to face coming into the hospital knowing this was my final chemo and having to deal with the emotional side of that. The week prior was my final round and I didn’t even know it at the time. What a great ending to a relationship that I was highly dependent on and didn’t want to be. To never have to see the other party again. Good riddance I say! I’m still at the hospital every 3 weeks for my targeted treatment of Herceptin and also the trial drug but at least I’m not here weekly with the chemo headache and hangover. Unfortunately though once the chemo stopped my diarrhea didn’t. In fact it worsened and I was forced to take Gastro Stop every two days otherwise I wouldn’t have been able to leave the house or have any energy to do things that normal people do. Off to the gastro-enter-ologist I went. Extremely hard to say quickly until I knew how it was spelt and then it was surprisingly easy. It was a bit strange meeting the gastro doctor, Dr A, for the first time. The poo doctor with lots of poo puns. At first I was a bit shocked and I’m not easily shocked. But then I became more comfortable and actually laughed at his poo puns. Except when he said I was “full of crap”… Seriously, he did on more than one occasion. Very odd bedside manner. I think it’s because he’s a talker and when you’re dealing with poo day in and day out, you’ve got to make a joke of it. Anyway, he booked me in for a gastroscopy and colonoscopy, to “get to the bottom of it”. So after a low fibre diet for 2 days and then a diet of liquid and laxatives for a day, I had a lovely sleep and woke up feeling slightly violated, as I do after being sedated while the people around me go about their business with my body, especially where bottoms are concerned. The cocktail of drugs used to knock me out included a sedative that causes amnesia so I’ll never remember anything to do with the procedure (thank goodness for that!) and aneasthetic to keep me under for the duration plus a bit longer. I went home and had another lovely sleep in the afternoon. The lead up was terrible. I was sooooo hungry. Liquid just doesn’t cut it when it comes to my metabolism. The hunger was even worse than the bowel prep and diarrhea that followed which is saying something. Anyway it’s behind me now and results show that there is no evidence as to what is actually causing the diarrhea which really confirms my oncologist’s suspicions that I’m on the trial drug. So we’re going with that and just seeing what happens next.
Herceptin (Trastuzumab) and the trial drug (Pertuzumab) are both targeting the HER2 proteins found on the breast cancer cells. “Herceptin stops the growth and rapid multiplication of the cancer cells by binding to the HER2 proteins and blocking the signals telling the cells to grow. Herceptin can also activate the immune system to kill HER2-positive cancer cells.” (reference: http://www.herceptin.com) Pertuzumab works in the same way but works on a different part of the HER2 protein to the Herceptin. I haven’t even considered coming off the trial because of my ongoing diarrhea. Today Dr N said to me she’s going to find out if the trial will allow me a cycle off to see if that makes a difference. Since having the colonoscopy the diarrhea did stop until I had treatment again and then it came back in full force. Back on the Gastro Stop!
Enough about all of that. So much other stuff going on currently. I’m a strong believer that it’s what’s on the inside that counts and this mindset has been essential in my recovery and how well I’ve coped with my body changes. The changes affect me more on a physical level than emotional or mental. I get frustrated with my restrictions but how I look doesn’t really bother me too much. Although in saying that, I was feeling quite unfeminine for a little while. That’s my politically correct term for butch. It’s the ultra short hair. While wearing the scarves I did feel more feminine than I do with the ultra short hair. They’re like an accessory that can be mixed and matched with different outfits. And mixing and matching accessories with different outfits is a very girly thing to do in my opinion. Even though I did have this feeling of less femininity in March, I’m happy my hair is growing back and I know that its just another feeling (or perhaps just a thought) that will indeed pass and I don’t let myself get hung up on it. The hair on my head does look a lot lighter than it was previously. Derek likes to tell me its coming back grey. He’s mean like that. Or maybe just honest. I had no grey hairs prior to chemo so it would be very odd if it did come back grey. But hey if it can come back curly from straight, who’s to say it won’t come back grey instead of brown. No curls as yet though but probably still too short to show up any. It’s still super soft and reminds me of baby animal fur. It’s like a pregnant belly, people are drawn to it and want to have feel. I don’t mind though. If I can bring some happiness into people’s day by feeling like they’re patting a kitten then that’s a nice feeling, as long as they don’t grab me by the scruff of the neck. And there’s no way I’m going to start purring. My eyebrows and eyelashes are also starting to grow back, finally. There was a period where the hair on my head was growing back but my eyebrows were still falling out. Mid May I really noticed a big change and it’s nice to not look so bare around the eyes. The eyebrows and lashes really define my face.
Lately I’ve been thinking a lot about my double reconstruction that I plan on having next year. For me this is definitely a decision based on how I feel physically rather than how I feel about my body on an emotional level. I am quite comfortable looking at myself in the mirror or down at my chest. It’s never been an issue for me or something that I found too confronting, just having the one breast. I suppose I’ve always thought it would be temporary so don’t let myself get hung up on the fact that I’m down one boob. At least the cancer has been removed, that’s the best way to look at it. My main problem is how uncomfortable I feel physically. It has been very difficult finding comfortable bras and clothes with only one breast. Because my remaining boob has shrunk down to a 10a it’s virtually impossible to find a suitable prostesis to match it, let alone mastectomy bras that fit and are comfortable. I’ve taken to wearing crops tops but even they have their problems with rubbing on my skin and chest wall because of the lack of flesh and uplift there. The skin is pulled very tightly across my chest and is pretty sensitive due to the nerve damage from having the lymph nodes removed and the nerves pulled out of the way to facilitate the removal. I’m guessing there will still be a lot of tightness with a reconstruction but at least clothes and bras will fit me better. I hate standing in front of the cupboard wondering what to wear that I’ll feel comfortable in. Comfort is the biggest factor for me when buying clothes and this has always been pretty easy prior to breast surgery. Now it’s such a hassle and I just want to be even again, two boobs, same size, easy peasy. Having a double reconstruction will make my life easier and, I feel, more comfortable. I’ve been told the chances of my type of breast cancer returning to the other breast are minimal, but even with that information I’d rather just start from scratch and get a whole new set. I’ll always be worried deep down about it returning to my other breast or other parts of my body so best be off with it so it’s one less thing to worry about. That’s just me, others who are in my situation may feel very differently, but for me, it’s the best possible decision and one I’m unlikely to change my mind about. I can’t imagine going the rest of my life with only one boob due to the discomfort I have on a day to day basis. So that’s that – bring on next year!
Radiation started on 22 April. I’d been told it would be a breeze compared to chemo so it was very surprising to me when I found the first session extremely difficult and painful to the point of tears running down my face whilst having the radiotherapy. I lie down on my back with my arms above my head. I must stay still, with my arms above my head for 20 minutes until the radiotherapy is complete. Due to the removal of my lymph nodes, nerve damage, cording, etc staying still in this position for 20 minutes (and on two occasions 30 minutes) has been much harder on my left arm and shoulder than it is on my right side. Unfortunately after a few weeks this hasn’t improved a great deal. My arm and shoulder joint ache, throb and twitch plus add in the pins and needles and that dead, heavy feeling and it’s quite agonising. The neuropathy doesn’t help either. All I can do is continue with my exercises and warm up the arm and shoulder before I go in. I’m at the hospital Monday to Friday except every second Wednesday until 30 May. There are no blisters on my skin but it’s a lot more sensitive than before I started and there is some redness so the damage is already being done. I lather on cold aloe vera (from our garden) straight after treatment and moisturise several times a day to try and hold off some of the damage. One downside of being skinny is that I have to wear what is called a bolis for two of the radiation fields. It tricks the machine into thinking there is more tissue there so what effectively happens is it doesn’t go as deep and is closer to my skin, which in turn means more liklihood of skin damage. All I can do is keep up the aloe vera and moisturiser and hope for the best. Those two fields are the whole of the left chest wall where there was previously breast tissue. Breast tissue covers a much bigger area than you might think. The third field being radiated is up near my collar bone which is effectively killing any remaining lymph nodes the surgeon wasn’t able to retrieve during surgery. This is also effecting the skin on my back above the shoulder blade as it’s going right through. The 4th and final field is towards the middle of my chest. This is virtually killing the internal mammory nodes that looked suspicious in the MRI prior to surgery. The surgeon, Dr K, wasn’t able to find and remove these during surgery, which isn’t unusual as they are hard to get to from beneath the ribs.
I was a bit worried about these internal mammory nodes before starting radiation and talked to a few of my Drs about it. My surgeon, Dr K, talked to a radiologist at the Wesley Breast Clinic who looked at my original MRI and CT scans and re-reported on them. Apparently radiologists can report differently on the same scan or images from tests such as MRIs and CT scans. Who knew?! My MRI was done in Rockhampton and reported by a radiologist up there soon afterwards. That radiologist didn’t have the benefit of seeing my CT scan as that was done down in Brisbane just prior to surgery. So the radiologist in Rockhampton reported that the suspicious internal mammory node was 7mm and likely to have cancer. This was taken on board by Dr K who said she’d try to retrieve it during surgery following a sentinal node biopsy the day prior to surgery. That procedure is still the most painful thing I’ve had throughout all of this. The pain was excruciating – ladies, it’s similar to when the baby’s head is crowning (the ring of fire) but in your breast. It involved 8-10 needles filled with radioactive material being injected into the two tumors in my breast. No local injections as that would have doubled the number of needles required and would have been tortureous. I had this procedure so that Dr K had a better chance of removing the internal mammory node(s) during surgery. The radioactive dye didn’t go to the internal mammory nodes, only the lymph nodes under my arm, so she wasn’t able to see them and remove them. So since then and much more intensely recently, I’ve been worried about this little 7mm sucker that is in my body, potentitally cancerous. Of course, in the theory the chemo should kill it, as should the extra radiation I’m having to this particular area in doses equivilent to removing it. I’ve spent time researching metastatic internal mammory nodes with breast cancer and the prognosis always seems to be worse than if they aren’t involved. They’re a draining system and could direct cancerous cells to other vital organs in my body. Very scary thought. Anyway, the radiologist at the Wesley Breast Clinic took a look at my scans and reports and said she was of the opinion that the internal mammory node was only 5mm and normal. If it had have been reported in this way initially I wouldn’t have been put through the sentinal node biopsy and perhaps radiation to the internal mammary nodes wouldn’t have been necessary. I knew this before radiation started and all of my doctors thought it best to be cautious and radiate the internal mammory nodes anyway. So I’ve followed their advice and had this area radiated as I’ve said above. I don’t like the thought of doing a form of treatment that isn’t necessary but then on the other hand it would be terrible to leave it and then find out down the track that the cancer has spread elsewhere via the internal mammory nodes. Better to be safe than sorry.
This whole line of thought has also got me thinking about the first tests I had up in Rockhampton that started when I was still pregnant with Polly and was given the all clear at that stage. I’m definitely the type of person who prefers to look and move forward instead of dwelling on the past too much but sometimes the past needs to be dwelled on before I can move on. I’m not the type to be able to simply brush things under the carpet and pretend they haven’t happened. And in this instance I am worried about other young women not being diagnosed early enough because the testing isn’t as thorough as it could be. Why did the results from my FNA (fine needle aspiration) come back as clear when there is no doubt in my mind that the lumps would have had cancerous cells in them at that time? Polly was two weeks old at this point and it wasn’t until the cancer had spread to my lymph nodes 3 months later that I went back for a follow up appointment. Maybe they decided not to do a core biopsy because I was breastfeeding, I’m not sure. Maybe it was because I’m young and it’s still considered an older ladies disease so they just didn’t think it was cancer. It was the core biopsy that finally gave me a cancer diagnosis though. I’m thinking it should have been done in the earlier round of testing but why wasn’t it? These questions are likely to remain unanswered as I suspect it will just be a shrug of the shoulders if I was to try to get some closure on this. If I had my time over again I would only go to a specialised breast clinic for anything breast related. I’d recommend any of you ladies doing the same if that’s an option for you. They see them all day long and know exactly what they’re looking at/for, whereas a radiology clinic doesn’t specialise in breasts, their areas of expertise are much wider but not as deep. The Wesley Breast Clinic gets a big thumbs up from me.
I may come across as very strong and together but I do have to say that I have my moments when I feel the exact opposite. One of the worst occurred a couple of months ago when I came across some photos and a blog of a guy who’s wife died of breast cancer. He took such beautiful, sometimes haunting photos of his wife, Jen, who was undergoing treatment, again, the last ditch effort to keep her alive as her breast cancer had metastisised in her liver and brain. I often shy away from stories where the woman affected by breast cancer has either died or has secondary cancer but this one hooked me majorly. It makes me feel physically sick to think that this could happen to me. I can’t hide from it though and when I do leave myself open to such information, it’s like a flood gate opens and can’t close again until a decent amount of tears and emotions have been released. I start thinking about the horrible things that could happen in the future if my cancer were to reoccur. Don’t think my mind doesn’t go there because I’m a shining light of positivity. It does go there and I can’t even say the words but I think you grasp what I’m saying. It’s hard for it not to go there when faced with something such as cancer whether prognosis is good or not so good. Of course my prognosis is good and as you know I don’t like to look too far ahead but its hard to keep the thoughts of recurrence completely out of my head. People do die from this disease. That’s a fact that can’t simply be forgotten or swept under the carpet. It’s real and no matter how positive I am that doesn’t change that fact. Scary isn’t it? Not something I like thinking about and I’m sure it’s not something you like reading about. But there it is. It’s real and scares the shit out of me, makes me feel very sad and absolutely hopeless sometimes. My heart races really fast, I get flustered and I have a hard time thinking about anything else. It’s like a little anxiety attack Usually its just before bed too which means I can’t get to sleep and have a terrible night sleep. Thank goodness for anxiety/sleeping tablets at moments like these. This particular episode lasted a few days. It was extremely hard to pull myself out of this slump and I can’t even remember what I needed to do to make myself feel better. I’m a big believer in positive affirmations and mind over matter so maybe I just talked myself out of the negativity. I do feel I have a lot of inner strength and often a little pep talk to myself is all that’s needed to help me through a rough patch plus making sure I love and respect myself.
A good thing I did for myself recently was attend a silent retreat meditation day at the Cancer Council which was a follow up to the mindfulness and meditation course I did with them earlier this year. The day was full of different meditations and lots of inner reflection. We weren’t to talk or make eye contact for 4.5 hours. I didn’t find it difficult, in fact I thoroughly enjoyed the time to focus fully on myself and my thoughts, feelings, surroundings, etc. It was a gift to myself and one I’d like to do more often if possible. The only hard part was integrating back into normal life such as traffic and Rosie & Polly talking and chattering away at me incessently. Next time I might ease myself back in a bit slower. Self discovery is a wonderful gift to give yourself, no matter what’s happening in your life. No religion required!
You’d think I had enough to deal with but the punches just keep on coming. My ovaries have recovered extremely quickly after chemo. I got my period back a month after finishing chemo. Being stubborn again and not giving up so easily which is good and bad. Good because my body is recovering from the shock of chemo but bad because ideally we need my body to be oestrogen free, which obviously it isn’t if I’m getting a period again and a blood test has confirmed that I’m pre-menopausal. So, I had the menopause chat with Dr N and have made the decision to start on Zoladex injections. This drug will tell my brain to stop sending signals to my ovaries telling them to produce oestrogen and put me into menopause, temporarily. Zoladex is given as a monthly subcutaneous injection into the skin around the middle of my belly. Actually I’m having it today while I’m at HOCA having my 3 weekly treatment. I’m a bit scared, the fear of the unknown really. I’m scared of having the needle in my belly but I’m more scared of the symptoms that will occur over the coming days, weeks, months and years. I’ll be on this for 2 years, maybe longer. Prior to making the decision to start the Zoladex I had a chat to Derek’s cousin, the gyneacological oncologist, about having my ovaries removed, or maybe even a full hysterectomy. It all sounds a bit extreme and too final for me at this point so I’m leaving those decisions for another day when I’m in a better headspace. I’ve had enough big decisions over the last 9 months, enough to last a life time, no more for the time being thank you very much. I may have said this previously but I’m actually more concerned about going on the hormonal therapies (I’ll be starting another one called Tamoxifen after radiation) than I was about the chemo. At least with the chemo there was a time frame and I knew my symptoms would come to an end sooner rather than later. With the hormone therapies the symptoms could be ongoing for years and going through menopause at such a young age has me worried about things I shouldn’t have to worry about at 35. Osteoporosis is my biggest concern. And I have good reason to worry because of my weight, or lack thereof. If you’re going through menopause and carrying around extra weight, you’re at less of a risk of bone thinning than if you’re skin and bones like me. Tip the scales though and at least my chances of recurrence are much lower because I eat healthily and am not carrying around extra weight. When I think of it that way I’ll take my skinny arse chances with the bone thinning and do what I can to counteract the chance of this occuring with weight bearing exercise and extra calcium and Vitamin D. I’ll have a bone density scan over the next couple of weeks to see how my bones look prior to these drugs taking effect and then every so often to make sure they’re holding up ok. The other menopausal side effects that concern me the most are the hot flushes and problems sleeping. I’m also wondering if being on two drugs that have the same side effects will make my symptoms worse than if I was only on the one – like a double whammy. Only time will tell and at least I’m not starting both at the same time. Anyway, there are bound to be some bad bits but I’ve just got to suck it up along with everything else and try to focus on the good and great in my life.
Thursday, 6 June 2013
So the above was written over the last couple of months. I’m not sure why I don’t just post what I’ve written and then write another whole new post. It’s often in the back of my mind. I’ll try and give it a shot today even if I don’t feel I’ve finished writing. I don’t quite have the knack of this blogging thing yet, I think posts should be shorter and more to the point. Whereas mine are long ramblings. Oh well. Back to it. (haha, that didn’t happen…)
I’ve now finished radiation. The whole experience was pretty horrible. The pain in my shoulder joint continued and even got worse towards the end. The damage has been done and my shoulder and back have weakened allowing an injury to sneak in this week. Physio yesterday and today will hopefully relieve the pain I’m feeling from this. The healthy body is like a set of dominoes laid out just ready and waiting to be knocked over. The first one gets knocked over and then many follow in its place. I feel like a pack of dominoes laid out carefully but being knocked over slowly, one at a time, sometimes two or three at a time in a bad week. I’m trying my hardest to keep them upright but things happen out of my control that make them fall over, knocking others in their way. The after effects of the radiation are much worse than I expected and very understated from my initial meetings with the radiation staff. I was expecting redness and sunburn but what has happened far exceeded my expectations, and not in a good way. My skin skipped the blistering stage and went straight to peeling and rubbing away, leaving some very red raw patches. The worst is under my arm in the axillar, the worse possible spot as the friction from my arm or clothing just makes it worse. Even though treatment finished up last Thursday 30 May, I can expect my skin to continue radiating for a week or two afterwards. In my second last week of radiation my skin was looking fabulous and Dr M thought it was very unlikely that I would blister. Air punch! So the following week when my skin starting rubbing away I freaked out a little. Come Friday the day after my treatment finished and my Mum flying home I was back at the hospital late in the afternoon with Polly getting my burns tended to and dressed by the nurses. I have tried numerous creams and dressings and finally on Tuesday morning they used me as a guinea pig and put on a new gel type dressing that covers my whole left chest. It’s very soothing and cool. It releived the nerve pain and itching instantly (not forever but for long enough to get some relief). Since Monday I’ve been living in a fog of painkillers and have decided I’d rather the pain than the painkiller fog and hangover. Bloody horrible come down yesterday. I really feel for burn victims who suffer with burns on their faces or a large area of their body. The pain can be described as burning, searing, itching, stinging, throbbing, tingly nerve pain that becomes unbearable. I also feel bruised internally around my ribcage. I’d have to say that for me, the radiation has been worse than the chemo. It may be because the chemo was a while ago now and maybe I’ve forgotten how bad I felt and I’m in the middle of this RIGHT NOW. Who knows. Maybe I’m just a big sook and didn’t realise it until now. I thought I was doing so well! Anyway, along with everything else that has come to pass, this will too and in a week or two I’ll look back and probably say, that wasn’t so bad.
I’ve had such amazing support from my family over the last couple of months (and beyond). Our league of babysitters extends from our immediate families to aunties, uncles and cousins. The thing we’ve needed most throughout this whole life changing experience is someone to look after the girls for us when we aren’t able to and to help alleviate any stress. So a big thank you to all of our babysitters and helpers. Your help has meant the girls can continue on in their lives feeling loved, supported and comfortable in their surroundings while still having the boundaries that we set for them. This is very important at this stage of their lives and you’ve all contributed in making them the little people they are today. I’ll never be able to thank you all enough. Most of all my Mum has been my shining light. Before I had the girls Mum and I couldn’t spend more than a few nights together. I was in my 20s and didn’t really understand or fully appreciate the role of being a mother. I’ve become a lot more tolerant and understanding since having the girls and over the last 9 months the girls and I have loved spending all this extra time with my Mum and their Diddy (our name for Grandma). It’s definitely one of the most positive experiences throughout all of this. We’ve grown so much closer which I love. You put me and my family first (no complaints), which is the ultimate sacrifice. Love you Mum.
Back in April Mum watched the girls so Derek and I could enjoy a weekend away together. We went to Mt Tamborine. It was cool weather which was perfect for being on the mountain. A lovely place to visit and we thoroughly enjoyed our time away. Our next trip away is thanks to my Aunty Deb in Perth who held a fundraiser on my behalf and raised enough money to send us away for a luxurious long weekend. Thanks again Aunty Deb! And thanks Mum (and maybe Aunty Gail) in advance for watching the girls. We’re not sure where we’ll go yet but I’d say it will be in August. I need time to recover from radiation plus I’m going to Melbourne with Beck and Amelia at the end of June and it’s Rosie’s 4th birthday in July. I think she deserves a lovely little party so time and energy will need to be spent on making this day extra special for her. We’ve been to a couple of 4th birthday parties over the last couple of months, friends of hers from kindy. I’ve met some lovely mums and am keeping in touch with them. Rosie and I have been on a play date with one who lives around the corner from us. Very convenient.
We’ve been doing lots of socialising and our biggest social event was my end of chemo and Polly’s first birthday party. Thank you to everyone who attended to make it the crazy party it was. I think for Rosie’s birthday in July we may have it at the park! We also participated in the Mother’s Day Classic 4km walk and I thank everyone who sponsored me, I raised over $1000. Thanks also to Jo who organised some pink shirts for the event. It was a great way to spend Mother’s Day, walking with family and friends for such an important event in raising vital funds for breast cancer. I hope to be able to run 8km next year.
I’ve just changed Rosie’s days to Tuesday, Thursday and Friday to coincide with a parent lead playgroup at Montessori that Polly and I will attend on Tuesday’s next term. I’m looking forward to spending this quality time with Polly because not only is she the second child so time is halved but I haven’t been able to be the mum I want to be because of all my treatment and appointments plus feeling like shite too often. I’m really hoping I can focus more on the girls for the second half of this year instead of being so self obsessed. It’s a terrible feeling, having to put myself first time and time again before my two beautiful girls and their needs and desires. I know their needs are met but when Polly wants to be picked up and I can’t because of my burns and sore back or when Rosie wants to me sit down and play with her and I have to go out for yet another medical appointment, it really tugs at my heart strings and I get the dreaded mothers guilt, a trap I’ve never really fallen into before all of this. Actually, it breaks my heart over and over again. But I look forward and know that things will change and I will feel better soon.
Thursday 20 June, 2013
Well, you wouldn’t think things could get any worse but they have. Seriously, you could not make this stuff up! I’m in hospital right now about to find out whether I’m going to have a Laproscopic Appendectomy.
Finally my radiation burns started healing and even though my skin is still sensitive it’s no longer sore or itchy and the fresh new skin is looking lovely. I was back at the hospital on Tuesday afternoon for my second Zoladex injection. This time it bloody hurt. There was a delay and the numbing cream had worn off. The pain didn’t ease and in fact got a whole lot worse. The injection was on my right side in my abdomen and the pain started at the injection site and then gradually moved down to above my right hip. I was home alone with Polly for two nights and by the time I’d done the whole bath dinner bed routine I was in agony. I swear it felt worse than labour pains or at least on par. I called my oncology nurse and explained my pain to her. She didn’t think the Zoladex was the culprit and suggested I try some paracetamol. Well it took me nearly 10 mins to get up off the floor and get the paracetamol, serious, all consuming pain. By this point and was crying and very confused about why I was in so much pain. I called my oncology nurse again and she had Dr N, my oncologist, call me. Dr N didn’t think it was Zoladex related either and suggested stronger pain killers and if the pain continued or worsened get myself down to emergency, in an ambulance with Polly if necessary. I put my aunty and uncle on notice and had a very bad night sleep. The pain wasn’t acute anymore but it was persistent and my tummy was very very tender to touch and even to movement. In the morning I went to my GP first and then onto Wesley Emergency. I’d had a piece of toast in the morning and as soon as I was admitted into emergency they made me nil by mouth, no food, no water until further notice. Saw the Dr, was poked and prodded, had an ultrasound. The ultrasound has a 50% chance of showing the actual appendix and unfortunately in my case the useless little sucker was hiding behind my bowel and not making itself visable to the sonographer. I volunteered to stand on my head if that would help but alas a change of positioning wouldn’t make a difference. Ovaries got the all clear at that point.
So, the ER Dr suggested I see a surgeon who kept me waiting all afternoon. Dr B was paged around 12:45 and I finally saw him around 4:30. By this time I’d passed my Hangry stage and was weak and a shell of a woman due to having fasted since 7:30 that morning. He was briefly apologetic before grabbing a hold of my hand and taking my pulse. I personally think it’s a trick he uses to help settle the patient and make them feel more at ease, or maybe he is actually taking the pulse. Anyway, he poked and proded me and said he wanted me to stay in overnight with the possibility of surgery the following day. When he came back later I asked him what were the chances of me having appendicitis with how I was presenting, symptom wise. He said less than 50% so I opted for a CT scan of my abdomen which has a 95% success rate in showing whether an appendix is inflamed. He was ready to rush me straight into theatre and said the other possibility was that a cyst in my ovary had ruptured and the blood was causing the pain. He could clean this up while he was in there but it wasn’t necessary as it would clean itself out in time. I wanted more reassurance that it was my appendix before committing to surgery to whip it out. The appendix has no function and I’m not too concerned about having it removed but I don’t want surgery and recovery that is not necessary.
I was given the all clear to eat around 6ish. I ate, had my scan and was moved from emergency up to the ward. Where I ate the most disappointing dinner of cake, custard, yoghurt and cheese & crackers. Some may love this as a dinner but not me. Healthy food please! I’m sitting here dreaming of a hot meal right now as I’m fasting again in preperation for possible surgery. God I’m hungry. I don’t handle fasting very well at all. I’m sure I’ve said that previously with other ops I’ve had over the last year. Anyway, here I am again, waiting for the surgeon to discuss what the next move is. My oncologist Dr N, popped in to see me and she read me the report from the CT scan. Obviously the information was given to the radiologist that I was having pain in my right side. He has taken this into consideration when writing his report and has said he thinks the tubal thickening he sees is an inflammed appendix but it’s hard to tell as I’m skinny and fat helps in seeing the internal organs better under CT scan. Go figure. So, I’m sitting here and my pain has greatly reduced compared to Tuesday night and Wednesday. It doesn’t hurt to laugh or cough anymore. If my appendix was really inflammed or at risk of bursting I really should be in agony right now. The other markers for appendicitis are nausea, vomiting, loss of appetite, plus issues with the white blood count when blood is taken. I’ve had no issues with any of these. It’s a tough one. I think what they’re saying is I have mild appendicitis based on my pain and something that looks like it could possibly be an inflammed appendix on the ct scan but is this worth undergoing the knife for? Personally, I don’t think so. I just wish the surgeon would hurry up so we can discuss. I need his professional opinion and advice and I need it now as I’m Hangry and sick of bloody waiting!
I’ve seen the surgeon and it’s good news. No surgery for me today! The reason behind this decision is because my pain has virtually gone. I still have tenderness in my tummy but obivously not enough to warrant cutting it open. I’m glad that Dr B made this suggestion as it’s the decision I was leaning towards anyway. He did say that there’s an increased chance of another appendix attack within 12 months. Alternatively it could possibly be ruptured ovarian cysts and just to keep on top of ibuprofen and paracetamol for any pain related to that possibility. At least if I have another appendix attack there won’t be any confusion about what is happening, I’m pretty sure I’ll know! I’m back to see the surgeon on Monday for a check up. Obviously if the pain increases again I’ll be straight back in.
So I’m off home very soon. I’ve been allowed to eat and drink. Thanks to everyone who helped over the last two days, Uncle Brian and Aunty Deb, Aunty Marie and Derke’s Aunty Annette. Uncle Brian stayed with me at the hospital all day yesterday listening to me complaining about how hungry I was. I swear I was complaining more about that than about the pain I was in! I was meant to be going to Melbourne this weekend with Rebecca and Amelia. That’s since been cancelled and the girls have decided to come to me instead. I am so happy that we’ll still have our girlie weekend, even if it’s not in Melbourne. Thanks girls – BFF 🙂
Now, a bit about what I was starting to focus on before all the drama of the last two days. Rebecca and I have formed a team to walk 60km over two days in October this year. The event is called The Weekend to End Women’s Cancers and will raise funds for the Royal Brisbane and Women’s Hospital and also Queensland Institute of Medical Research in relation to treating and researching women’s cancers. Our team is called Scrambled Legs and if you can’t join us in our efforts, how about making a donation. To be elible to participate in the walk we must raise $2,000 each. I’m aiming a bit higher and would like to raise $5,000. If you donate before end of June you can include it in this year’s tax return. Make a large donation and pay less tax! Be quick, you only have a few days left.
If you’re excited at the prospect walking and fundraising yourself we’d love to have you join our team. If you’d love to do it but are worried about either walking the full 60km or raising the required $2000 then have no fear, the organisers have provided fundraising specialists and walker trainers to help you reach your goals – just give them a call on 1300 22 9255. There will also be cars to pick you up during the walk and take you to the next pit stop if you need a break or onto camp if you simply can’t walk another step or are injured. In regards to the fundraising, I’d like to hold a couple of events in the lead up to the walk so anyone who has any ideas or would like to help, please let me know. Even if you’d like to hold your own events and donate the proceeds to our team, that would be very much appreciated. Did you know that as Queensland women, 1 in 2 of us will develop some form of cancer in our lifetimes? 1 in 3 Australian women. Those numbers are much higher than I could have imagined. Will it be you or your daughter? Your mother or your sister. It’s frightening. Most of the women in my family have been dealt the cancer card and I don’t want the same for Rosie and Polly. I’m going to do what I can to help end women’s cancers for my girls if nothing or no one else. Please help me in any way you can!
Thursday 27 June 2013
Both girls have been a little sick lately as is normal at the start of winter. Poor Polly had tonsilitis. Polly is nearly 15 months old and following in her sisters footstep, meaning she’s happy crawling and shows hardly any interest in walking. In her own time I say. She does love climbing though and has started climbing up chairs and onto tables. Eek! Rosie has been going to 4th birthday parties and having a great time with her friends from daycare. I’ve become friendly with a couple of the mums too which is a lovely addition. Rosie’s in kindy next year and will continue on at Indooroopilly Montessori. The following year she’ll be in prep and it’s likely we’ll still be here so we’re looking into schools for her already. We’ve found a very small school that is big on self directed learning and community. I’m very excited about it. I feel that a good start to primary school is of more importance than the high school they’ll end up attending in years to come. These are the formative years after all.
Beck and Amelia came to visit me instead of going to Melbourne without me. I was so touched by this decision, we had such a lovely weekend together, laughing, crying and catching up. We even went and stayed in the city at the Marriott for one night where we did a little shopping, relaxed in our room with no children, went out for dinner, dessert and cocktails. I was extremely tired and may have pushed myself a bit much after the big week I had last week but it was well worth it. We’ve decided we’re going to New York for our 40ths and will also try to catch up once a year child free. A nice treat to ourselves to look forward to.
So I’m back at the hospital again for my 3 weekly treatment. Nothing out of the ordinary to report. Hot flushes are a bitch and are becoming more frequent. They’re more like mini heat waves which is what my mum calls them. They’re bearable but even in this cold weather, I still have to throw all the blankets off in the middle of the night until it passes. Then I snuggle up again. I hope to be able to start focusing on my walking training schedule soon, just waiting for my stupid cold to pass (there’s always something isn’t there! When will my body recover for long enough to keep on the up and up?) Derek, the girls, Missy and I will hopefully do a couple of walks on the weekends and I’ll do walks with Polly & Missy during the week. I just need to start! It’s very frustrating but I’m trying my hardest to keep that positive mindset.
Here are a few quotes and funnies that have resonated with me lately. Also some recent pics.
Until next time, Ciao!
(1) Derek and I at Mt Tamborine sampling the locally made beers
(2) Rosie doing Mother’s Day Classic Walk for breast cancer
(3) Polly just being cheeky
(4) Rosie and I posing for the camera
(5) Derek & I in shirts Jo organised for Mother’s Day Classic Walk
(6) Amelia, Rebecca and I having fun on our last minute trip to Brisbane when we had to cancel our Melbourne trip
(7) Polly’s new hair cut courtesy of me
(8) Rosie enjoying b’day cake at her best friend Charlotte’s b’day party