Wednesday 31 August 2016

Oncology Commences


First appointment with oncology today. This is the different hospital, not nearly as good at the my name is stuff, and it is really noticeable now I've got so used to it. It makes a difference. It was a full room for my appointment; a doctor, a student doctor, a cancer nurse, myself and my husband, and then another nurse to redress a wound. Considering most of this was spent half naked it was a bit too crowded but on the plus side, nobody talked to me like I was a deaf 3 year old or ambushed me into talking about my feelings.

I didn't really find out much I didn't know, Dr confirmed it will be 6 rounds of chemo and gave me another leaflet about the treatment. Oncology Dr and surgeon differed on their view of Herception, oncology today said test hadn't been done yet, surgeon yesterday said test had been done I didn't need it. Will check with surgeon on Monday when I go to be restitched. They will start chemo in a week or 2, they can't tell me which. I also have to see oncology professor before I start, who was on her holidays today, attend a chemo talk, have wound healing checked again, and something else I can't remember. Had bloods taken today and wished, as I always do, that every time I had blood taken it would be by a phlebotomist. 
Nobody can tell me when chemo starts or when any of those appointments are going to happen. I am hoping they don't just call me the day before again. I do have lifts offered, and husband can come home to fetch me, but it is just a bit of a pain not driving yet. Oncologist was fine about me working during chemo, if I can, and with the things I am putting in place to limit exposure to infections. 

Tuesday 30 August 2016

& it was all pants ...

My news was really pants. I was prepared for the worst so am fine, but not talking to anyone yet. Everything they had seen on the MRI was taken out during my op and tested post surgery, it was all cancer. I kind of lost count of everything but there was a lot. So there’s more surgery, and chemo, and there’s likely to be radiation although that isn’t definite yet. Have opted for chemo before surgery, current thinking is 6 x 3 weekly cycles and it will start in a week or two. I will know for sure tomorrow after oncology. I also can’t drive for about 10 more days because of the bit that’s unstitched, which is being re-stitched on Monday.
The nurse drove me mad again today. She was redressing the bit that was unstitched after the doctor had checked the wound healing so I was held captive, and I do realise I might sound very uncharitable because she is trying to help, but I just didn’t want to talk to her. She told me she thought I had the right constitution to get through this, which is ridiculous because I’d just told her how low I was feeling. Maybe I do have the right constitution, whatever that means, but it isn’t like anyone has any choice about getting through this. She also laughed about me working again; I’m doing the couple of weeks between surgery and chemo so that I have a bit of income in September and a focus on something other than cancer.
Results day today. Post op pathology with my consultant will tell me what the treatment plan is and if there is more surgery. The factors that come into play for more surgery are whether there was cancer in the margin of tissue they removed around the cancer, whether there was cancer in the lymph nodes, and what that LCIS was all about. I've had as much removed as could be with the surgery I've already had so further surgery could be a lymph node removal or a mastectomy or both, depending on the results. Consultant will also look at how I am healing. Oncology is tomorrow to find out exactly what kind of poison will be administered and all the rigmarole that goes along with it. 

Monday 29 August 2016

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.