Treatment Starts to Loom

Tuesday was the day I felt better, so it was good timing to go out for a walk with friend and her little boy, and it was a lovely walk. I guess I got home about 4pm, so somewhere between 1.30pm and 4pm a message had been left on my home phone giving me an appointment for the next morning, from a different hospital. The different hospital is the one that does the chemotherapy, so that felt like an ambush.

Prior to discharge, I was told my post op results and treatment plan would be ready 25th August but my consultant was away. Last time I saw a different consultant I got confused so I just decided not to do that again. I liked both doctors, I thought I understood them both, but it seemed not. I am sure they would understand each other perfectly but it just seems simpler for me to stick to the one doctor. My appointment with my consultant for post op pathology and treatment plan is 30th, so I wasn't expecting to hear from anyone about anything until then and definitely not the day before the day I'd been told the results were available. 

The different hospital would have given me the appointment after a multidisciplinary meeting that discussed my treatment plan, so were very efficient, but I felt a little bit like everything was suddenly racing ahead. They’d rung at a stage when I have not been given any information about my treatment plan by my doctor and would not have been even if she hadn’t been away. I’ve also now had to get over the idea that my doctor wasn't involved in the multi disciplinary meeting that decides treatment plans, I kind of know enough about how that works, and she'll have seen everything before I see her.

My first thought, when picking up the message was, do these people think I do nothing but have cancer? They’d left me a message the afternoon before a morning appointment the following day. I also wondered about how they thought I would get there, even without the recent blip which they won’t know about (it delays my ability to drive) they would know I can’t drive myself yet because they know my surgery date. They also know from my address that I live out in the sticks and the hospital is in the city centre. I don’t expect them to know my bus route, but rural services are skeletal, and I don’t feel robust enough for that yet. I don’t have a constantly available driver and I can’t afford a round trip taxi fare (£70); income is decreasing fast. I also had a follow up appointment at the same time re the infection etc. with the practice nurse at my GP’s, and arrangements were all in place, including a lift from lovely friend.

Since one of my early appointments when everyone insisted they couldn’t talk about chemo because it was racing ahead … everyone has talked about chemo as a done deal. Given this is because of my age, I feel like that early on appointment was a bit disingenuous. This does mean I was prepared for it to be part of the treatment plan, and of course I am likely to do whatever the doctors suggest is my best option, but the treatment plan is supposed to be something I discuss with my doctor. Chemo isn’t quite a done deal for me yet because it is 6 months of fairly grim treatment and I want to know about all the options and outcomes.

The practicalities were sorted out easily with a couple of phone calls to helpful people. I will see Dr next Tuesday and go to chemo clinic next Wednesday. I probably sound like a grumpy old woman in world where everyone is trying to help treat me. It is a world where I have no control, so when I make a decision about how I want to receive my results, that is my way of managing this awful process. There’s also a big deal made of the patient’s voice being heard, but it isn’t really. That’s ok, they are the experts, I just like to have the conversation. I’m also probably never going to get over people just landing appointments on me without even just asking if the time/date is ok for me.

Bit of a Blip

Saturday saw me at the walk in clinic, I shall try not to be too graphic but I felt like I'd come a bit unstitched. This was unfortunately in the lymph node biopsy incision under my arm where I couldn't see very well what was going on. OH couldn't quite tell either so we decided to go to the walk in clinic first thing. It turns out about 1 cm is unstitched, but I also have an infection, so both account for discomfort. Both have also made me feel acutely vulnerable. I'd rung the breast clinic on Friday and a nurse rang me back eventually, advice was not as I might have thought to go in and see them or go to the ward, but to go to GP or walk in clinic. 

Nobody can restitch until infection clears up so I got a prescription for antibiotics and some dressings. The dressings we couldn't find anywhere, so ended up back at the clinic at lunchtime begging for supplies. I also need to get into my GP's to get it all checked once antibiotics have had a chance to work, for once i can answer yes to the question about whether I can see a practice nurse, so hopefully getting an appointment this week won't be too difficult. I'm usually offered an appointment in 3 or 4 weeks time if I want a GP. Going to the GP or the clinic also isn't very straightforward, I can't drive yet. I have a lovely friend who's offered to take me but, well I know this isn't possible, but I'd love it if a nurse popped round often enough to check on me! 

I feel like I've been left to look after myself and am not quite equipped to do so. I was in hospital for surgery on a Wednesday, discharged on a Thursday, and back on the Saturday to have dressings removed. I was told stitches would dissolve and steristrips would fall off in a couple of weeks, and just to let them. I wasn't really given any information about how to keep the wound clean. Maybe I need to check if they gave me a leaflet. I was advised to shower, rather than bath, but not use soap on the area of my body that has been operated on. I could use a flannel to only use once and only on that area of the body, that hasn't felt very effective so I've bought some sterile wipes now. Also a bit worried that I can't do my post op exercises very well, the unstitched bit pulls and although that is only mildly uncomfortable, I don't know if i'm making things worse. 

Pre Results Anxiety

The days following the op were a bit dispiriting, I was mainly sore and tired, and felt like this was the easy bit so I was falling at the first hurdle. It is after all fairly minor surface surgery and the rest of the road is likely to be tougher. Yesterday was probably the first day when I was up and about all day, though some of that was spent lying about in the garden! I've had some visitors and that's been lovely, it's been nice to eat outside and chat then rest. 

Most people do want me to think positive and that everything will be fine. I'm not wafting around miserably I hasten to add but I don't think there is anything positive about cancer or the treatment, except not dying. The pink brigade have done a good job, I think, of whitewashing the reality of breast cancer. Somehow that pink world makes it feel very treatable, and there have been huge advances of course, 70% is a great survival rate. What isn't so great is the survival rate from secondary cancer which 30% of those with breast cancer will get, this is breast cancer in different parts of the body, it goes on the move. Of course you hope the chemo is what will zap that opportunism but there is no cure for secondary breast cancers and most people survive about 2 years. Hopefully everything will be fine but that is the guillotine hanging over the head of every woman who's had a breast cancer diagnosis. 

I'm not sleeping now because I've started to feel anxious about the post results and the treatment plan. There is the chance of more surgery, to remove lymph nodes or a mastectomy depending on the pathology. There is the likelihood of chemo therapy and then there might be some radiation. I feel maimed in the aftermath of surgery, and the next phase of treatment is likely to change my appearance, it's all a brutal blow to one's identity. I'm not entirely sure how anyone can feel positive about any of that, except not dying. Of course it would really help if I could stop worrying about money, my income drops to benefit levels in about a week, but more of that another day. Meantime I prepare for the worst whilst hoping for a chance at the best. 

Sleepy Head

The day of the op I just slept, the day after I woke up and then slept. This has become a bit of a pattern, I suspect the 80 year old lady on my ward is zippier than me at the moment. I seem to be sensitive to anaesthesia and I am sore, being in pain is tiring, although it isn't major surgery so a bit surprised by that. It could be all those weeks of waiting for results and not really sleeping have caught up with me. 

I'm not happy about it. I should be able to drift guilt free into a nap but I'm not. I feel fragile because I am so tired and it is making me feel like I am not managing this very well, that upsets me. It worries me about the treatment I am going to go through next, that will be gruelling, and months of just being very tired is a depressing thought. I suppose I also factor in my vulnerability to depression, it hasn't reared it's head yet, but the only other time I just want sleep is when I am. Associations are strong aren't they. 

Post Op

The day after surgery I woke up to beautiful sunshine and fresh air, my bed was in a window bay. The surgery went according to plan and I was looked after really well the whole time I was in hospital. I was asleep virtually all the time post op, anaesthetics don't agree with me, and I was sore. But apart from that I was glad the surgery was over and happy about that bit. I let everyone know I'd been in and out and was fine, people worry when you are in theatre, I worried about being in theatre. In fact the bit where I was actually taken down to theatre was huge and scary and I needed tissues, but then the anaesthetist started to get to work and you get that nice woozy feeling before knowing nothing.  I had good company on the ward and I suspect the 80 year old lady I met is up and about in her smart clothes today whereas I have been languishing in bed and pyjamas! 

Surgery is quite brutal on your mind and body, even if it is a good thing. I am a decidedly different shape now, I haven't looked a lot yet, baby steps. They can make me symmetrical later. I am scarred, bloodied and bruised. I also know I may need more surgery, depending on what the pathology says, and chemo probably before that. I get results and the treatment plan in 3 weeks time. Hopefully this is all something to be fixed, one way or another, and it will be a blip in time, but there is also room to prepare for the psychological impact without being miserable. Even my most upbeat friend (and I am much more melancholic) thinks about her breast cancer every day. 

I am very very lucky to have lovely friends around me, they support, love and help me, and I know they are going to let me be any which way I am. The people who are telling me to think positive thoughts and plan nice things to cheer myself up, they need to stop. I'm not particularly miserable or negative about this, but it is pants, and it is going to be months of tough treatment. I can hope for a positive outcome, and the outcomes for for cancer treatment are much better than they used to be. Not dying is good, but the treatments are toxic, and nothing about this is fine. 

The Hospital Date

The first date I was given for surgery was 20th July, so we are not running that late, but the date did keep getting bumped. I thought it was going to be next week for various reasons but it isn't, it's tomorrow. I'm in at 7am, having a wire inserted in the B3 LCIS, and surgery probably in the afternoon but they might change the list. They don't know the list order until the morning. So off to have steak, chips and something like a fabulous chablis. Shall update when not to sore. 

About Turn

My head hurts but I am going to explain this because I know that some people are reading to keep up and it is nice that people want to know, I just can't talk about it all the time and I would be if I was updating as we go along... Rang in this morning with a decision and a request to see my Dr now she is back from holidays. Got into clinic this morning, so that was good. What wasn't so good was getting confused again. 

Basically the risks are not reduced by having a mastectomy, they are the same. I'm probably not going to be able to explain that because I got it from a nurse at the point where she realised I was not going to be able to do pros and cons on this one. The only thing that does reduce risk is chemo. So my idea that we take everything and then we'd be safe (relatively speaking) wasn't accurate at all. 

The outcomes are the same for the two ops, the only difference between the surgeries is that I may have to have a second if there is more cancer in post op pathology if I don't have a mastectomy. There's a risk of having two ops anyway if the lymph nodes need to come out so I'm having the small surgery to start with and seeing how I get  on. The other surgery was pretty huge, and if I need it in the future I will have it then, because all the things I want to avoid I can't anyway. The LCIS is an early indicator of breast cancer, but it could be an early indicator of the cancer I already have, or another cancer altogether. The nurse told me I wanted the doctor to make a decision for me and who wouldn't FFS.  

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)!