The Decision Tree

The thing about decisions is that most of them aren't really life changing, and if they turn out to be the wrong decision, in lots of circumstances different decisions can be made instead. The decision I just made wasn't quite like that, because as well as thinking about all the permutations and possible outcomes, I needed to know what any regrets might feel like. Some women regret choosing a mastectomy if pathology reveals healthy tissue. That might happen but since I've decided to go for a mastectomy with immediate reconstruction using tissue from my back, I'm just using healthy tissue from elsewhere instead as a friend helpfully pointed out. Don't click that link if you're squeamish! 

Of my choices, it is the most complex operation I could choose so surgery won't be next week, the theatre slot won't be long enough. I am hoping for the following Monday or Wednesday; my surgeon's two lists. I just think the LCIS is worrying, it'll need to be monitored so that is constant worrying, and it could easily be another cancer later even if it all clear post op. I have to call on Monday to let them know what I decided. The doctor might tell me something on that changes things when I call her, but for now I am decided and what I know about any decision is that it feels better when you have been able to make one. 

Uncertainty Continues

Well I got myself in a right state today but bizarrely after a completely inconclusive outcome, with only difficult decisions to make, I fell fine. Alternative doctor was brilliant, the only downside to the appointment was that it was with the cancer nurse who not only talks to you like you are are a partially deaf 3 year old but who is also animated enough for me to want to cast her in a children's TV show, perhaps for deaf 3 year olds. I had to zone her out. 

The biopsy trail was followed through to the most recent which has tested as an LCIS, these are scaled B1 - B5 and mine is B3. I don't know which way the scale runs but one end is benign tissue and the other is cancer. We don't know what this is. Alternative Dr drew lots of pictures for me which was helpful. One of them was to show how large this lesion is compared to the samples taken. Basically the needle couldn't possibly test all the tissue so to really know what this is they would slice it up and look at it under the microscope. They do this whatever surgery I have. The options therefore remain a lumpectomy for the first two lumps or a  mastectomy for all three.

Each option has its own *joyful* features (need a sarcasm font). If I have a lumpectomy, they would take out the LCIS lesion using a separate incision because it is in a different place and do the pathology post op. If it is cancer this would mean a second surgery and that would be a mastectomy. I don't want a second surgery, but that could happen anyway. Lymph node biopsy is done under general anaesthetic during surgery with pathology post op for example, and there are cases when they need to be removed. Not always, sometimes they can be radiated. The mastectomy is obviously irreversible and I could find out post surgery we have removed healthy tissue.  I am offered immediate reconstruction with a mastectomy, but the best way to do this for me would probably be an implant, and radiation can affect this, so that could be another surgery anyway. There is no way of knowing that so I'd just take that risk. 

So I have to ring on Monday and say what I want. Luckily bit of a work crisis to return to after hospital appointment which took my mind off everything beautifully, so time for a glass of wine and bed in time for an early start. And if we look on the bright side, no more biopsies. Oh and you know what else is good in cancer world, everyone keeps telling me how young and fit I am. Go me (I am neither). 

More Results?

Today I am going to find out the results of the traumatic biopsy. This will determine the type of surgery I have, mainly because the NHS can't just remove healthy tissue, so anyone thinking they'd just have a double mastectomy and be done with it all, you can't, not unless you have the Angelina Jolie gene thing going on. 

If the biopsy is clear there will be a removal of 2 cancer sites and a bit of a reshape. If the biopsy is cancer  it is mastectomy. The type of operation determines how long I need in theatre so if the former it is next week because they can fit me on the list, if not the week after. Goodness only knows what they do if the sample is indeterminate, I am having no more biopsies, this much I am sure of. I think medically the amount of blood last time might mean they think it is a bit of a bad idea too. The less invasive surgery means an MRI in 6 months and possibly more biopsies to see if further surgery is needed. The take it all option would be appealing if it were available, I don't want to go back for surgery. I am scared of it. I hate the hospital already, even though I know how brilliant they are and that what they can do is marvellous. Surgery + chemo + more surgery + more chemo + a bit of radiation = well it is a bit of a marathon isn't it. 

If a mastectomy, I was enthusiastically offered immediate reconstruction by my doctor at one appointment. She's done some research into reconstruction not being offered by hospitals and really not liking that for women, so this is clearly her thing. But then a nurse added a codicil last week, this seems to happen a lot; you can absolutely have a thing, but you need to know all these other things about it and we won't tell you the things about it at the same time we inspire you with confidence about being able to have the thing, definitely and definitively, no we will do that later. There's some learning here for how people need to be given difficult information; bite sized is fine, but maybe give me the related bites at the same time. Last week's nurse told me how a lot of people wait because implants can be affected by radiation and it does of course make sense that fragile tissue taken from elsewhere else might not respond well to being radiated. I just don't want to go back to hospital or have another surgery, although another surgery might be needed anyway, I can only plan for now. My doctor is on her holidays so hoping I can wait to see her when she gets back rather than having to make a decision today with someone I don't have a relationship with; I will need to walk about types of reconstruction (there are 3 I think) and their respective risks. I think I also get to see the plastic surgeon for that. 

It doesn't matter how much support there is around you, you are the one with cancer, and this isn't an event. If I was just going into hospital next week for surgery and then need time to recover, that would be one thing. But that isn't how it is. Even if I don't need anything else doing for me this time, I am going to be having surgery and then some toxic chemicals pumped into my body, probably be radiated, and then maybe next March this will all be over. For now. It will always be for now. I have areas of tissue in my other breast that could be problematic, they are just too small to look at yet, and the rate of secondary cancer is 1 in 3. In case you think this just isn't enough positive thinking, I should probably tell you that I don't write when I am in the depths of despair, I write when I feeling ok and this is just what it is. I got a message from someone this week, unsolicited, suggesting I plan lots of nice things. I don't really mind what anyone says to be honest, we are all human, and I'm sure I've done my share of doing and saying the wrong things at various times. You can be reassured that there are nice things in my life but you might be able to see from this blog that planning anything has been problematic, hospital appointments have got in the way and it isn't like that is going to stop any time soon. The only difference is going to be when I have a treatment plan, but then people still need to be admitted during chemo sometimes because it affects your immune system, so it is all so unpredictable. 

A very sensible friend who was treated for breast cancer 5 years ago was told by another friend that she was fine now wasn't she, she said that she is fine but there isn't a day goes past that she doesn't think about it. This isn't a one off, it isn't tied up with a pink ribbon, and it is life changing. I don't think I really knew that before and I write this because nobody else is in this with me. It's a way of keeping people up to date without having to manage anyone else's emotions at a time when I can just about take care of my own, and make a stab at my husband's. I am very very grateful for everyone's respect for that, very grateful for my colleagues at work who have all shown kindness in their own way, but who have let me do this the way I asked them to. All I can say is that I was right to trust my instincts about how to manage this because it is working for me. Once I know a bit more and I need some practical help, I will be calling on everyone, and my husband will need a lot of help with making me dinner (he has never cooked)! 

Ouch

Thursday was the day with the new charged needle to find out if the third lump is cancer too, there are already two areas. It was also a long painful process that left me quite traumatised. The MRI takes about 40 minutes, so I had that time in the MRI with the set up one way called pillar and post. I do understand the different set ups now btw but am sure you can look them up if you want to know; in short there is a grid or pillar and post, either use a marker they can zero the readings to in order to map the site the tissue needs to be taken from. There are also lateral and medial set ups. The reason they tried a different method was (as far as I can tell) to avoid going the same route again because it increased the risk of bleeding. There is a 1 in 100 risk of bleeding needed to be treated in theatre under anaesthetic, I think because it is a vacuum biopsy. Turned out the post was in the way and they weren't going to be able to biopsy anything with a bit of plastic blocking them. So we were back to the grid and a bit more set up time. 

I suppose it is worth saying here that setting me up on the biopsy table itself isn't straightforward and throughout the process I need to stay absolutely still, well apart from the time I am being manipulated into position. This means a couple of wedges on the left side so I was titled slightly but is still a tall order which left me feeling like an elderly arthritic person after all was complete. The good thing about today is I was going into the MRI feet first, there is no logic to this, but it makes me feel less claustrophobic. Picture below is what we would like to find! 

I was back in the MRI for another 40 minutes with the new set up and then it was time for the really horrible bit. I was very touched by one of the team coming into work on her day off so I would have all the same people with me. There is an enormous amount of vulnerability and physical exposure involved. Whilst I lie still with face down so limited visibility, there is all kinds going on around me, and their firm hands on my back were reassuring. The local anaesthetic is also v painful, it stings a lot, and it was at this point when that needle was inserted with v little warning that the consultant radiologist said I'd moved. I hadn't, but I had taken a sharp intake of breath and probably flinched. I know how important being still is, a fractional move makes a difference, but I do defy anyone to limit their physical responses to pain? 

I've been able to zone out through most of my biopsies so far, except the lymph node aspiration which was just v painful and shouldn't have been done as far as I am concerned. They should just wait till surgery to biopsy under anaesthetic. They have been uncomfortable and a bit weird because you can feel something inside your body, but not painful. This was 5 tissue samples all causing pain and I bled, quite a lot, not enough to worry about but I was damaged enough not to be able to drive without bleeding the following day so I didn't but that felt awful too - a bit like I was trapped. They mammogram afterwards to photograph the marker they've inserted every biopsy so they can compare it to later scans. This happens in the breast clinic and I decided to grab the nurse, even though she might talk to me like a deaf 3 year old again. We had a talk about horrible things in the quiet room, I cried, rallied and left with an appointment for my results next Thursday.

The talk did bring lot of things home, chemo is the best way of avoiding secondary breast cancers, which are metastases that spread from the primary cancer to become secondary cancers. So the best way of not dying at my age is to have chemo. 1 in 3 people die from secondary cancer and there is no cure, just palliative chemo to reduce tumour size. Apparently 1 in 2 people get some kind of cancer which made me think it really is very common and please don't let my husband get it too. There was lots of talk about my surgery date, it's had to move once because the type of surgery obviously dictates the time on the table, if this biopsy is cancer, it will be bumped again because I will need longer. I won't go into all of that because it involves a series of awful decisions and there is absolutely no point considering any of them until they need to be made. 

The Good News that Wasn't Really

Today was the day that I went back for an MRI to check the last MRI biopsy had got all the right tissue, the stuff that had come back clear. They’d know because they'd be able to see the impact of the biopsy in that area. If they weren’t sure they had got it all, they were going to re biopsy. So first an MRI, then a reading of the images and then set up for the biopsy. I maintain my awe at the radiologists being able to biopsy under the MRI, it is really difficult and really clever. It is also really painful so I wasn’t really looking forward to it. 

The MRI confirmed that the area they had tried to biopsy last week under the MRI had not been biopsied. It was all still there, and all looking a tad worrying, so clear means nothing. 

Fast forward and everyone is having a quick chat in the corridor …. The biopsy needle hadn’t charged despite being on charger all weekend, the manufacturer is going to fix it tomorrow, I am back on Thursday. This is all good and fine but means I won’t have results back in time for seeing the Dr on Friday when surgery type was going to be discussed and confirmed. Dr is then on her holibobs. I will get result from another Dr next Thursday. Given there has been nothing straightforward about any of this, and it’s made my Dr’s head hurt, this does not make me happy. 

I am not someone who takes pride in being complicated, or who wants to scare anyone about how this can be so complicated, I just have dense lumpy tissue which makes cancer hard to detect. Mamograms show up most cancers so it isn’t this hard for everyone.

So today felt like I got some good news. It could all go wrong again but let's be here where we are first. The MRI biopsy was clear, they want another MRI on Monday to check they got all the tissue they wanted, and they want to biopsy again if they didn't. Surgery got bumped till when my doctor is back from her hols which is fine and doctor, who is formidable woman, cracked a few smiles. We won't know for sure till results day (again) next Friday but it may be a bit of a lump out, a bit of reshaping, and much less radical surgery. I know lots of women who say just chop it off, or take both, I just don't really like having bits lopped off my body. Well not that anyone has really before, it's more the idea of it. So I feel a bit like I have a reprieve, that it isn't as bad as it could be, and I have a bit more time to save some money for when I am off which is great. the less stress about having to work the better. Might have something a bit fizzy to drink. 

Yesterday I had am MRI biopsy and I'm torn between how very clever it was and how very uncomfortable or painful at times. Obviously now the pain is over I veer toward the former. It had been mentioned, not as routine exactly, but not as anything special. I found out later they'd only done 6 so I was the 7th and it was tricky, so lots of conversations about how to do it which were interesting, I helped a bit with something so obvious I think they were just being kind when they didn't say they'd thought of it already! There's a marker at that site now so it can be seen on other scans and they gave me a mammogram yesterday (so they can reference any future growth I guess). It was all highly distracting stuff on a day when I'd been very wobbly about the approaching surgery. After talking to the radiologist before the scan, I realised the area around the two know cancer sites is 4.5cm and although a lumpectomy is possible, it increases the risks of further surgery if anything is found in the healthy margin they remove around it. Everyone was lovely and looked after me as ever. Results are on Thursday. Unless it is cancer the situation remains what it was, a decision about the best surgery, and hoping not to be bumped from my lovely doctor's list if I need a long time on the table. 

The whole day was spent at the hospital yesterday, I had a pre op assessment appointment which took a couple of hours and included a very sensible and nice chatty nurse, then later a cancer nurse who did the deaf three year old delivery with the animation of a children's TV presenter. It is all terribly distracting and not conducive to absorbing information. I was given a lot more info, now have 21 booklets, cancer does seem to be complicated. Today was the first time I was asked if I'd read something, I said I had, but actually not sure that I did and it doesn't matter because they go through it with you anyway. I can't exactly be critical because it is well written information but it is also totally overwhelming when the rest is also totally overwhelming. 

I was delighted to notice all the #hellomynameis notices all over the hospital after I'd noticed how everyone always does introduce themselves. A lovely lady called Sarah looked after me during the MRI and I overheard her talking to someone else later about something she'd told me; she'd told me about her cancer, surgery and treatment and how she'd been. Then she gave me a hug. I think I must go around looking like a frightened rabbit at the moment. She was telling another nurse about that, and her lost veneer and called me a lovely lovely lady. Phew, even in frightened rabbit distracted state I have behaved myself. 

Connections

I opened my account on Twitter up (it was locked) to better engage with others with BC. It has been really helpful, I 'met' a cancer doctor who also has cancer. You don't hear everything the doctors tell you when they talk to you, it just doesn't get absorbed, and I can ask her questions later. There are others at various stages of treatment/recovery. Sometimes I am able to engage, sometimes not, but they all understand that because they've been there. 

What isn't so great are the random direct messages, surely meant to be kind, but from a stranger who has absolutely no idea what it this is like. To put this in context, this is a world where I have no control, it is constant bad news and difficult decisions. Later will be easier but I have three hospital appointments next week and all of them are scary. With people I know, I have said there are too many unknowns at the moment to talk about this, to give updates. It is painful to do so, which is why this is here. I'm not being a control freak I am just managing something unmanageable in a way that works for me. I know it is hard for people not to show they care, but I have been really touched by the way my colleagues at work have respected my wish not to talk about this at work. Work won't be there for long, but it is my little sanctuary of 'normal' in a world where not much is. 

I may or may not be strong, sometimes I am, sometimes I'm not. I can tell you it isn't easy to manage my own stuff and other people's emotions, including my husband's. There is no rainbow at the end of this storm, except not dying of course. I will continue to enjoy life, I did indeed do that all day yesterday and most of the time other things are really positive. It isn't all bleak but it isn't a picnic. What it is, is having a frightening illness. It is not something that is going to go away, it's the start of scary surgery, toxic treatment, scans, tests and medication for a long time. Rainbows, positive thinking, and 'battling do not cure cancer. On days like today when I just feel like curling up into a ball and sobbing, am I failing if I do that and if I'm not brave or strong, do I just get to lose. Nobody can tell me I will be fine, so that I can keep smiling (I do anyway sometimes) because nobody knows. I won't really care if one of my friends says the wrong thing. Strangers need to be more careful, however well meant. 

This year was the second time I'd seen Springsteen in Coventry and the first time I'd done the pit. Instead of queuing all night for a spot at the front, there is a system of getting a number, once you have a number you lose it if you don't turn up for roll call. Typically for a Friday show, numbers and there will be roll calls at 9am, 1pm & 9pm until the day of the show. It takes commitment and availability from work! I managed 7pm Thursday night and was pleased with my number.

Springsteen fans travel, some basically do the whole tour, I was exhausted after one pit queue experience but even if I never do it again, the experience was back breaking but amazing. I loved everyone I met in that queue, they were all socialists, they were all kind, and they were all funny. This girl is writing a book about why people queue. Today as I drove home I put the live version of the River on in the car. This album was me 'meeting' Springsteen, it was released about the time I could be home alone from school and have an hour to myself, when Roger Scott regaled me with his fandom. On the way home to meet my husband to go to the hospital for results, it was “Hungry Heart” that mopped up my tears, originally written for The Ramones. I was ok by the time I needed to go. 

Outcome was as outcome was expected. One lesion is cancer, of a different kind, there are so many different kinds of cancer. The other they don't know so there's an MRI biopsy which will determine if I need a mastectomy or a lumpectomy. It might bump surgery because of the time I need on the list, which would be a pain, but we get that result next Thursday at 5pm. I was ok once we'd seen the doctor, I liked her better this time, she also had some of my answers so she'd remembered my questions. Nurse also realised that I hadn't wanted to lose my whole identity and that I would still want to work around treatment. 

Chemo seems unavoidable, so I've contacted a salon about a wig and another about eyebrow tattooing. The first salon I rang didn't listen to me at all and were a bit sheepish about the C word, despite sensitivity blazing out from their website. In didn't listen I mean that I told the 'specialist' that I was having the tattoo before the cancer treatment (you can't have it during chemo so I want it in advance) and she told me to bring in a picture of me with eyebrows so she could tattoo them where they usually are – err did she think I’d shaved them off? A number of other not listening things happened and I didn't book. I may not say this when it happens, but am far more worried about the nausea and side effects of chemo than the hair loss. It is also really nice to have to do practical things, tasks I can manage, and a nice wig is a nice wig.