All about the money

One of the nurses at the breast clinic told me that people make life-changing decisions after a diagnosis; they look at their life and think about what they are doing with it, and do something completely different. I’m doing exactly what I want to be doing and I just wanted normal. My normal included working and my work got to be a bit of a standing joke. I wasn’t quite sure what nurse type people meant when they said I had to put myself first now, it seemed it meant no work because they said someone else can worry about that now.

People knew what I did for a living and made some assumptions about that, mainly that I wasn’t being given the opportunity not to work. One of the nurses did eventually work out that it was psychologically important. Some people wondered how work things could matter when I have this cancer thing to put it into perspective but none of it stopped mattering. Besides which I couldn’t just sit around at home having cancer, thinking about having cancer, worrying about everything. There were days when I knew I was getting results and wouldn’t be able to do much because my head was a mess, but that was relatively easy to plan time off around. Other days I can honestly say I was reassured that my brain was working properly and I could still do everything I needed to. 

I am sure someone could come up with a whole load of reasons why work shouldn’t be as much of my identity as it is but I could tell you that having left school with 4 O’Levels, it was a long road to two degrees and a job that fits. I don’t for a second feel or think I am indispensible but being supported (as I was by a great manager) to hold onto a life pre cancer was critical. The other reason I wanted to carry on working was because I don’t get paid for very much sick leave, they are separate reasons, because I would never compromise my health. 

I don’t know how many people could take a year off work without assessing their financial commitments. Some people are lucky and are paid for all the time they have off. Along with losing my identity, I was going to lose my income, and worrying about money is stressful. It wasn’t long after I was diagnosed that we sat down with a spreadsheet and made sure we didn’t need to sell the house. There wouldn’t be much left over, but we could cover the ‘priority’ bills. Deborah Orr has written a lot about her breast cancer and said:

“I was able to be reasonably positive, not only because I knew I had a pretty good chance of survival, but also because my life was pretty stable anyway. I didn’t have to worry about who would look after my children while I was ill, or who would care for me after my surgery, how I would manage on statutory sick pay if I took time off from insecure work for an unsympathetic employer, or whether I had friends I could rely on to see me through. I had all of those things and they made it much, much easier for me to be ill.”

I got a letter on Tuesday; the same day oncology ambushed me, to say that I’d used up my month of full pay recovering from surgery. There is ½ pay for 2 months and I’m entitled to 28 weeks of SSP which is about £88 pw. The 28 weeks are included in those previous weeks off sick, so about 16 weeks SSP on its own. Then I have to apply for ESA although I won’t get that unless I am entitled to contributions based ESA. I fall through the gap that is having a partner/husband with a reasonable income, which is fair enough, but practically speaking we built a life based on both of us working because we do. I am sure there are some people who are much more financially savvy than me and then there are people like me who think we are ok to allow another 5 years to pay stuff off at 50. It isn’t terrible irresponsible debt, it is life. Ok, some of it is shoes.

Macmillan have done some research about the financial impact of cancer and most people are affected, some because they have to manage loss of income, but also because their costs increase. It’s an expensive business having cancer. I plan to work through chemotherapy, at home, and when I can, if I can. I might not be able to but that would at least be some income. I'm grateful that adjustments can be made and there will be work I can do if not debilitated by treatment. That isn't true for everyone. I'm grateful I don't have to worry about a roof over my head and I am grateful we don't have to sell the house, because we've made it a nice home, and if I'm going to be sick anywhere I'd like it to be here. But I might not be able to do anything, and whilst we all know that anything can happen at any time, it is stressful to have cancer and no money. The treatment and it's psychological impact are quite enough for someone to tolerate. 

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.