I’m like a yoyo, up and down, up and down. This is definitely the case emotionally but I’ve also been down to Brisbane and back again and I’m heading back down again on Monday for the start of a very long week. A week I expect will be the hardest of my life.
Just looking back on my week since my last post, there’s been a lot of information still coming my way. It’s like a constant stream and sometimes I just need to turn the tap off and wrap myself up in my cocoon (or bubble as Beck would put it), my safe place where this isn’t happening to me. So on Tuesday morning I went to see a Cancer Council Psychologist. This was a helpful process for me and I’ve already made my next appointment with her for after my surgery. She also referred me onto some other resources and events happening that I can attend to help make my life a bit easier and more enjoyable. There are Look Good, Feel Better events which help you deal with the appearance related side-effects caused by treatments like chemotherapy and radiation such as hair loss and changes to the skin. I’ll also be attending a Cancer Council run Living with Mindfulness workshop which runs for 8 weeks from mid October. The Cancer Council also has a program where they can match me to another woman who has been through what I’m going through now. I already have a couple of contacts for this so may or may not make use of it. There are also local support groups in Rocky and Yeppoon. Unfortunately both seem to be full of mainly older ladies and this doesn’t really appeal to me. I’d prefer to mix with women around my own age who either have young children or are yet to start a family. I just feel we’d have more in common and reading stories of other young women going through breast cancer, it seems to be something that comes up regularly, the lack of young women support groups in regional areas. Maybe I’ll start one myself once I get through the surgery stage. I’ve already asked the local breast care nurse to pass my details onto anyone else in the area who’s in my age group.
On Tuesday afternoon a breast care nurse did a home visit and I was able to pick her brain about so many things that will happen over the course of the next year or so. It was invaluable and I’d feel comfortable calling her with any questions along the way. We talked about the surgery, what I can expect afterwards, possible side effects from post op treatments, length and timing of treatments, that kind of thing. In relation to treatment though, I won’t know exactly what’s going to happen until after surgery, once the pathology report has gone to the oncologist. One thing that nearly every medical professional I’ve seen has said to me is that I will be hit extra hard with post op treatment as I’m young and have everything to live for. This is obviously very scary but again, I’m just trying to focus on the next step which I’ll get to soon.
As a yoyo I was up after such positive meetings with the psychologist and breast care nurse on Tuesday. On Wednesday I had a down day, which is a shame as it was meant to be a fun day spent as a family. We started the day with a nice breakfast, mine consisted of egg yolk scrambled eggs, now that I’m allergic to egg whites. 30 mins after breakfast I was going down hill quickly. Egg yolks still contain parts of the egg white and this was enough to make me feel the sickest I have yet from this allergy. Maybe it’s because I stopped eating them for a while, now I’m even more sensitive to them. I spent the morning in bed feeling sorry for myself when I should have been at the park with Derek, Rosie & Polly. I started feeling better when the girls went to bed so decided to head to the shops for a change of scenery. As soon as I got there I realised it wasn’t a good idea. I was on edge and wired, feeling like I’d drunk 5 cups of coffee. It was a mix of adrenaline and anxiety from being out in public. Very odd and very unpleasant. As has been the case over the last couple of weeks, I’ve found it extremely difficult to make the smallest of decisions, like what to buy from the shops for dinner, which recordable book to buy Rosie for when I’m in hospital, whether to grab the groceries we needed or whether to run home for safety. I had to go to the bathroom, take some deep breathes and make myself slow down. I did what I needed to in the end but when I got home the chick from Lenards forgot to put my chicken parmigiana into the bag, so stressing over what to have for dinner was a waste of time anyway.
Derek went to work on Thursday, Rosie went to daycare and I pottered around packing and organising stuff for our trip to Brisbane the following day. Jo popped in for a cuppa, bun still in the oven at that stage…
Friday, the big day. Rosie stayed with Derek’s parents and we headed to Brisbane for a day of getting my boobs out to see what would happen to them (and me) from here. After having two children, breastfeeding and getting my boobs out regularly over the last couple of weeks, I no longer look at them as the sexual objects they were in my 20s. To the 30s me, they are a force of giving life and love. This is why it will be so difficult to part with one of them because I feel that I literally give life and love via my breasts, to Polly at least and to Rosie for the first 16 months of her life. Once again I well up thinking about this loss and my ability to give my love to Polly in this way. And it’s not just the milk itself (of which mine has been called double cream milk by many a child health nurse), it’s the act of breastfeeding that I will grieve for in a few short days, and have been grieving for since finding out I could not continue to do so. I know I have to let go though because not to do so would be detrimental to my mental and emotional health not just in the short term but also in the long term. What a relationship I’ve had with my boobs since they arrived in high school, one that most, if not all, woman take for granted until the day comes when someone wants to remove it in order to save their life. I know which I’d rather, my life any day of the week, so it’s really no contest in the end.
Okay, that’s enough rambling about my breasts in that fashion, back to the serious stuff. So firstly we caught up with Derek’s family member who had pointed us to some great options in Brisbane. Then onto the breast surgeon where she gave me a very thorough examination and we discussed my options. Unfortunately, a breast reconstruction at the same time as the mastectomy isn’t recommended for me. Firstly, there is a risk of complications soon after the surgery from the reconstruction side of things. Secondly, there is a delayed risk of infection due to the implant once chemo has started (which will start approx. 3 weeks after surgery). Thirdly, there is a higher risk of infection for me due to breastfeeding. If my body rejected the implant and an infection followed I would be in hospital for weeks and treatment would have to be further delayed. The implant may also have to be removed which would mean I would be worse off then when I started all of this. I just couldn’t put myself and my family through all of that so have chosen health over outer beauty. It was a no brainer really.
It wasn’t a hard decision to make but there are definite down sides to waiting for the rebuilding of my body. I’ll jump forward to my meeting with the plastic surgeon later in the day. Even though it was the breast surgeon’s recommendation to wait until after treatment to move forward with the reconstruction, from the plastic surgeon’s point of view, he felt it would be better to do the reconstruction at the same time as the mastectomy. This was purely from an aesthetic point of view. His concern was the high chance of me also needing radiation therapy after with the chemo. My options will be very limited if that is the case. He explained it to me like this: My only option is an implant reconstruction due to my lack of tissue to steal from elsewhere on my body. This is generally called a TRAMS flap reconstruction where they take tissue from the tummy muscles and make a more natural looking boob from it. There are also similar reconstructions where they take tissue from the back or butt. This type of reconstruction could never be done at the time of the mastectomy as recovery can take months and would delay treatment. So implant it is, a smaller amount of tissue can be taken from my back to add to the implant to make it look a bit more natural. This would leave a scar on my back and would only be done if reconstruction was delayed until after treatment. The only option available at the time of mastectomy is implant only. What would happen is a tissue expander would be inserted and pumped up over a number of months, stretching the skin, until it was the ideal size and treatment had been concluded. Another operation would be done six months after finishing treatment to remove the tissue expander and insert the permanent implant. If I need radiation after chemo then the radiation therapy will most likely leave me with a deformed breast as the skin would most likely tighten around the implant. An attempt could be made to fix it up but not guaranteed. Personally I think that this would be worse than no breast at all as the tightness would feel awful and look horrible. He showed us some pictures and they weren’t pretty. So even with all of that in mind he still said that doing the reconstruction at the time of mastectomy is better than leaving it until after radiation. This is because if I leave it until after treatment and I’ve had radiation on a flat chest, it will be quite hard to stretch the skin after radiation therapy. This is when I’d need to move tissue/muscle from my back to the front for bulk and a more natural look. Either way the radiation will leave me with a less than desirable result no matter when I have the reconstruction done. It’s a loss loss where that’s concerned which is hard to swallow. If I don’t have radiation, then that’s a big win in more ways than one, so that’s what I’m really hoping for at this stage. This was the biggest let down of the day on Friday and I felt quite flat after finding out all of this information. The flat pun not intended initially but that’s pretty funny!
Back to my meeting with the breast surgeon. She was great. I felt very comfortable with her. She explained everything from the start even though we’d heard most of it already. Mastectomy still the only option and the nipple cannot be saved due to the DCIS being very close to it. She felt it was worthwhile to take a sample from the swollen lymph node under my armpit to make sure it was cancerous. She felt the chances were high but better to know as much as possible before the surgery. If it’s not cancerous maybe I won’t need a full lymph node axillary dissection, which is when they remove virtually all of the nodes under the arm. This can lead to other issues including lymphedema which I’d be stuck with for the rest of my life. I popped down to the breast clinic at the Wesley for an FNA test that afternoon and the breast surgeon will have the results early this week. There is also a slightly swollen internal mammary lymph node under my ribs. This could simply be from the numerous tests I’ve had since April or it could also be cancerous. She will try her best to remove it during surgery but it’s a hard one to get to apparently. She’ll need to use some sort of blue die to find it. If it’s not cancerous that will hopefully reduce my chances of needing radiation but if it is or if she can’t get to it then it’s more likely I will need radiation. The surgeon in Rocky wasn’t going to chase this lymph node and said treatment would kill anything in there. He didn’t say which type of treatment but I’m guessing now it would have been radiation although at the time I assumed the chemo. Fingers crossed she can find it during surgery.
The breast surgeon also went into detail of the type of incision she normally does depending on whether a reconstruction is on the cards. If it was an elderly lady who wasn’t going to have a reconstructed, the scar would be longer and this means less skin is left. For me she’s going to do a medium size incision and leave a bit more skin so that it’s easier to stretch out for a replacement boob. She’d love to do an even smaller one for me but leaving a flap of skin isn’t ideal. If necessary, the lymph nodes will also be removed from the same incision so I won’t have two separate scars. I’m preparing myself for a full lymph node axillary dissection as am assuming the node under the arm is cancerous although it could also be a reaction from the tests I had done back in April.
Um, what else was discussed… Well, I made the decision whilst seeing her that I would definitely be having the operation in Brisbane with her. We discussed other things that needed to be done. I’m seeing her for a pre surgery appointment on Tuesday morning at 9am. Then I’ll go in for a CT scan and bone scan. The CT scan will check my chest, abdomen and pelvic region to see if the cancer has spread anywhere else. Waiting to hear the results from this test will be excruciating. If it has spread then the surgery will be cancelled and I’ll have to start chemo immediately. This wasn’t really discussed any further and I’m trying hard not to even think about this as a possible outcome. We’ll cross that very scary bridge if we come to it. The bone scan is done to check my bone density. I’ll most likely go through a temporary (or possibly permanent) early menopause and this can cause a higher risk of osteoporosis. They just need to see what my bone density is like before starting treatment and I’m guessing will monitor it along the way or at the end to see if I need additional treatment for this such as calcium supplements or weight bearing exercise.
So that’s Tuesday. Wednesday I’m having some pampering and a bit of a girly day with my good friend Renae. It will be good to keep my mind off of the next day. Thursday – surgery, and as my lovely Aunty Gail put it, the start of the road to recovery. What a great way to look at it.
I was also meant to meet up with another breast care nurse at the Wesley from the Kim Walters Choice program but she was called away so I’m hoping to meet her on Tuesday. She’s going to give me a temporary prosthesis (a piece of foam that will become my replacement boob for a while), a mastectomy bra for recovering from surgery and a pillow to pop under my arm for comfort whilst sleeping. I’ve also started looking into more permanent prostheses and mastectomy bras. We’re lucky enough to have a shop in Rocky where I can be fitted for these items. I’ll leave this until after I’ve healed from my surgery but hopefully before treatment starts. My best girl friends Beck and Amelia will be here around that time so I’m hoping they can help make light of the situation. I’m also putting the call out to anyone who thinks they might be able to sew some pockets into bras for me as I have a feeling the mastectomy bras won’t be my thing. The pocket is required to hold the silicone prosthesis in place. The cost of a silicone prosthesis is nearly $400! Lucky I can claim this back on Medicare. That’s one expensive chicken fillet!
I’ll leave it there. Once again it’s late and I should be in bed. I think it’s going to be very difficult to sleep as surgery gets closer. I slept a lot today as I was exhausted from the trip down to Brisbane. I wasn’t the only one. Derek worked out that Polly slept over 20 hours out of 24 hours at around 2:30 this afternoon. Friday and Saturday really took it out of her. She handled it all amazingly well at the time though and wasn’t any trouble at all. Oh, we also sat Rosie down this afternoon and started explaining to her what was going to happen this week. My mum, Polly and I are flying down to Brisbane tomorrow. Rosie will go to daycare tomorrow and Tuesday to keep some normality in her little life. Derek will then pick her up on Tuesday afternoon and they’ll start driving to Brisbane from there, stopping overnight along the way and starting up again on Wednesday morning. With the help from a book from the Cancer Council, we explained to her that I have some bad lumps in my boob and the Dr needs to take them away and that I’ll only have one boob after they do that. She was fine and hasn’t even mentioned it again. I think after the surgery on Thursday we’ll have to explain it again. We haven’t yet explained what is likely to happen during chemo as I thought it best to take it one step at a time and wait until we know the possible and probable side effects of the type of chemo they end up giving me. It’s no longer a one fits all treatment and there are many chemo agents available, depending on the type and grade of tumour.
My beautiful girls:
Thanks to everyone who has been mkeeping in touch. Even if I don’t respond please know that I love getting your messages and to keep them coming this week as I’ll need them now more than ever. One more thing that makes me very sad but also very thankful that I’ve been able to help a friend in this way. A friend I worked with years ago went and had her breasts checked at my request in a previous post and after some tests has found cancer in one of her breasts. I just can’t believe it. Never did I think that me asking my female friends to check their breasts would result in someone else being diagnosed with cancer. 1 in 9 woman. Derek and I were discussing the stats the other night and as the years go on and we grow older, the chances of us knowing other women who will go through this are particularly high. Because we’ll have gone through it before them, we know we’ll be able to help in ways that will hopefully be invaluable to them. Of course, we don’t wish this upon anyone but facts are facts and it’s obvious that breast cancer has affected so many people as we’ve been bombarded with stories about others who have been affected by this terrible disease. Thankfully most of them are about these women surviving breast cancer. I personally don’t want to hear the other side to this so please don’t share them with me or my family.
Okay, I really am finishing it up there. Thanks to Beck for gathering stories and memories from many friends and families and compiling them into a document for me (which I’ve printed out and will be taking to hospital with me) plus creating this video for me. It made me laugh and cry and I absolutely loved it. Thanks to everyone who contributed also. Beck said if anyone else wanted to contribute to let her know. Get in touch with me and I’ll pass her details onto you by email. Check the video out on You Tube here:
To end on a very positive note, we have a new addition to the Hower family! Harry Ted Hower was born on Friday after a speedy labour. Jo and Toby are very much in love with their gorgeous little man and we can’t wait for our kids to grow up together.