Random ramblings

I feel the need for some clarification.  My blog (such as it is) is, as it says on the tin, warts and all.  This will include my experience of my cancer and my treatment.  It will also include my ranting and venting, my irrational thoughts and fears.  This may be irritating, but I do it for two reasons.  First because I need to let off steam in a way that I cannot do to most people (they need a break!!) and second because we all have stupid, irrational, irritating thoughts and worries, we are not all reason and logic and good sense all of the time.  Sometimes you need to say it as it is, sometimes all it takes is to be able to think “oh, it’s not just me”, and rather than keeping this stuffed up in my head, or irritating and upsetting the wonderful people who support me, I put it down on paper (well, I type it into the blog….) and it is cathartic.  Hopefully.

So, please, indulge me.  You don’t have to read this, but if you do, thank you.

I’m currently obsessed with my temperature.  How silly is this.  Never having needed to take my temperature before, I now need to do this every day.  Every fluctuation of 0.1 of a degree and I’m thinking oh, oops, oh, not so bad.  So far, I’ve stayed within the acceptable range without having to call the emergency number.  But it fascinates me that the range is only one and a half degrees.  It seems so tiny.  I live and learn.

I saw L yesterday.  I have seen him occasionally since my surgery, but never got around to telling him what was going on.  He asked how I was and I said he could either have the good answer or the conversation stopper.  He asked for the truth.  I told him what was happening, and he was so lovely and kind in his reaction, that I actually felt really emotional.  I am usually quite emotional, but have thus far been able to tell people about my diagnosis as if I was talking about a third person.

I found dealing with work last week, which is very full on, quite exhausting.  But at the same time, I am so glad I have managed to go back to work and slot some normal life into my day.  I’ve also had a useful conversation with my department head and he has assured me that over the next few months regardless of what happens, my job is safe and I will be paid.  This is a massive relief to me.  When I went off for surgery in January I had asked if I would be paid for my post-surgery recovery period (at that time we did not know that I would have cancer).  The response was “I don’t know”.  I was upset that they couldn’t see that this was important for me to know, but I was so stressed by the upcoming surgery that I left it and thought I’d deal with it on my return to work. 

A couple of other nuggets from people which I forgot to include in my last post:

A friend asked me, when I told her of my diagnosis, “why did you choose this?”.  What?? SERIOUSLY?!?!  Wow, I felt like she had punched me in the stomach.  Choose to have cancer??  I turned around and walked away, I didn’t trust myself to speak.  Reminds me too, of those who say everything happens for a reason, or that I’ll find it was a blessing.   If you believe that, and it works for you, I respect that.  But it doesn’t work for me.

A number of people have also said to me “of course they’ve told you that once your treatment is over, you’ll be fine?”  Uh, no.  That would be lovely, but no doctor could even know that, never mind commit to that.  No-one has the answer. I will have blood tests and scans over time to monitor everything, but right now, no-one knows.  My consultants will not even give me a prognosis.

I will find a way through this.

Grumpy corner

This week started my phased return to work.  My oncologist made it clear he didn’t think I’d be able to cope with work, but I wanted some kind of return to normality.  I also think that whilst I am able to do things, I must.  There may be a time I struggle more, but I don’t want to throw away the opportunity whilst it is there.

I felt strangely nervous, and ended up drained and exhausted as everyone wanted to catch up with me, and I had work to catch up with, but I am glad I went.

I have started to feel somewhat rattled though.  Because my hair has not yet fallen out, and I therefore look fine, a lot of people think I am now getting better. They don’t understand that I need more than one session of chemo.  They don’t understand that there is worse to come before I get better.  They don’t understand that chemo has side effects, that some of these effects are cumulative.  They don’t understand that I still have and will continue to have chronic pain, which I had before all this, because it is an entirely separate issue to the cancer.  They don’t understand that my immune system is not what it was, and I have to be especially careful not to get ill.  They say I am “strong” or “brave” – no, I am not – I am only doing what anyone else in any other situation would do: try to get through this as best I can.

Some won’t talk to me – I get it, they feel awkward, they don’t know what to say, but all they need to do is be the way they always used to be with me.  Some feel they have to say they are fine when they are not “because we don’t want to burden you” – I am still the same person I was, you will not burden me, I care about you, nothing has changed, this is not about me, we are all equally important no matter what is happening.

Some are suddenly “experts” – you must do this, you must do that……….thank you, but at the moment I am taking advice from my oncology team, they have given me a lot of information and options and I have considered them.  But then I am seen as being difficult. 

Don’t get me wrong, I appreciate everyone’s support and care, the advice even if it is misplaced, I fully understand why people might not understand or might not do the right thing (they don’t do this on purpose, they are trying to help).  But it still frustrates and stresses me because I feel I am constantly explaining myself.

Crucially for me, I am me, a person, not an illness.  There is so much more to me than just one aspect.  I am not one thing, I am not my cancer.

My First Chemo

The day I had been dreading finally arrived. T and I got to the hospital for my 8.30 start. As T said, it was like going to Frankenstein’s laboratory without knowing what the result would be. Tense? Yes.

Luckily E, my nurse for the day was absolutely lovely. She spent a lot of time talking with me and answering my questions, and really put my mind at rest. There was a bit of a delay because my consent forms hadn’t been sent through, but whilst we were waiting, E starting setting everything up for the pre-chemo meds.

I was given an anti-histamine which made me feel quite dopey, but I felt this was a good thing, as it took the edge off the day for me. Finally the consent forms arrived and we were good to go. Everything went smoothly and I started to get the hang of how it all worked. Initially some things were confusing as they were simply unexpected. We were offered teas, coffees, water, biscuits, newspapers. At lunchtime they came round with a trolley of sandwiches, yogurts and light snacks. I was kept well fed and watered!

Poor T, not used to just sitting around for hours was getting edgy and so I sent him off for a walk round the block. I was stuck however, and my only exercise was going to the toilet or sitting in my chair twiddling my feet.

Having initially been told by the oncologist that the session would last five hours, it in fact was 7 hours, and E confirmed that this is how long the other sessions would be too. I was given some anti sickness tablets and steroids to take at home, and then sent on my way.

Whilst it was comforting having T with me for my first chemo, and it also helped him understand what would be happening whilst I was on the ward, for my future sessions he will just drop me off and pick me up afterwards.

When we finally got home I was too tired to do much, other than do a load of laundry and cook the supper. So far, relatively, so good.

During the night I felt mildly nauseous, but managed to push it to the back of my mind. When I got up however, I felt a bit worse and thought I’d take my anti sickness tablet which might help. Unfortunately five minutes later my stomach rejected it. At the best of times I don’t cope well with nausea and vomiting, but luckily this time once I’d been sick, I felt better. I was a bit concerned that my tablet had not had time to be absorbed, and I couldn’t take another until later in the day. I managed a mug of ginger tea, and then tried a few mouthfuls of breakfast. After an hour and no ill effects I had a little more to eat, with the rest of my meds.

I have since been for my walk – lovely and therapeutic. Whilst it is still cold outside, the sun was shining, perfect walking weather. I then went to my GP’s surgery to book my next batch of pre-chemo blood tests. Back home, I have done another load of laundry (it’s all glamour here!!) and managed to eat a bit more, so I don’t feel too bad.

First chemo down, 5 to go. I can do this.

Random ramblings

I am going to miss my walks when I go back to work, they have been so therapeutic. Not only have they helped me heal physically from the surgery, but they have given me a peaceful time to process mentally what has happened, what is happening, and what will – potentially – happen.

However, before that point comes, I still have to have my first chemo session. I am terrified. Whilst T is busy Googling everything, I have read the literature given to me at the hospital, and don’t want to explore too far otherwise, the horrible things that might go wrong (and there’s plenty of that information around). I do want to be prepared and informed, but I don’t want to panic unnecessarily. I am already panicking too much as it is. I have so many questions, and am finding it difficult to deal with that the common answer is “everyone is different, and everyone is affected differently”. Yes, I could have guessed as much, but a general idea would be helpful. No-one wants to give any information in case you hold them to it. Am I the only one who finds this frustrating?

Ah well…..so I grit my teeth and go for another walk.

Reality starts setting in

Up until now, this whole experience has for the most part, felt quite remote. I could tell people what was happening, but it felt as though I was talking about someone else. Whilst I have had time to process information, and think about what is happening, it still has not felt “real”. Every day I see my long scar from surgery, and I think “whaaat????”. Is this really happening? Yes it is.

Yesterday I had my first meeting with my oncologist, D. It didn’t get off to the best start. He introduced himself and then asked if I knew why I was there. Yes, following surgery it was found that I have cancer on my ovary and uterus and need chemotherapy. He asked why I thought I’d need chemo. To kill off any cancer cells and stop it returning? He told me there is no more cancer that has been removed. I am not a medical professional, I am not the brightest button in the box, but even I know it is not that simple. I felt like a naughty schoolgirl. I felt patronised and belittled. I could feel the panic welling up inside me. It is important to me that I can find a level on which I can connect with my doctor, since he will be making major decisions about my health and life. I felt like crying. I gritted my teeth and let him talk. He rushed through everything and I had to interrupt to ask questions. But the speed with which he was dealing with this was making my head spin and it was difficult to think clearly. T was with me and was desperately trying to slow him down and ask questions too.

Ultimately I think that D is just one of those people with minimal “people skills” and lacking generally in compassion. He’s all about the science and not the person. He asked if I had any health issues and I mentioned my chronic pain. He then said that a side effect would be pain and this could potentially be there for life. Whilst I want to know all the ins and outs, the ifs and buts, he is treating a person, and not a thing, and I felt his manner could have been better. I did manage to get a laugh out of him at one point and felt I had found a slightly more human side. Hopefully we can work together on this and I can trust him.

They think I am young and healthy (these things are relative of course) and so hopefully I will cope with the treatment. My type of cancer is “clear cell”. They are going to give me paclitaxel and carboplatin. Right now, these are just words.

I signed all my consent forms and T and I went off with the nurse who ran through a few more details and then showed me where I would be having me chemo sessions.

T has offered to sit with me for my first chemo session – all 5 hours of it. This is a great comfort to me, because although it will be a long, tedious time for him, and he loses his annual holiday allowance from work for doing this, it might help us both. For the rest of the sessions, he will just drop me off and collect me at the end. I have 6 sessions of chemo planned, three weeks apart. I start on 25th March. I am still trying to get my head round all of this.

Results and Reflections

A week later I had my follow-up appointment at the gynaecology department where I would get the results from the final tests done post-operatively.    For reasons unknown, I saw a different consultant W, not my original consultant/surgeon H. 

T came with me to ask questions and for moral support.  I expected to go in and hear the consultant say “good news, following the further testing there was no further evidence of cancer”.  But instead she hedged about, asking me what I knew, not getting to the point and I began to think this is not right.  Finally, she said that further cancer had been found on my uterus.  Therefore, we had not found this as early as originally thought, and the cancer has spread.  My cancer is stage 2b, grade 3.  Whilst this is not the end of the world, it is not the diagnosis I had – under the circumstances – hoped for.

We spent some time with the oncology nurse afterwards and she gave me a big pack of information and contacts.  My head was spinning.  None of this felt real.

I am the sort of person who needs to know everything.  Knowledge is power.  The more I know, the better I can prepare to deal with it.  I need to trust that the doctor is being honest and not hiding anything.  I understand that not everyone is like this.  Some people want limited information, and some would rather not know, would rather someone else dealt with it.  To each his own, we are all different.  I have found it very frustrating though, that in spite of me saying numerous times that I need to know everything, and that I didn’t have all the questions to ask, never having been in this situation before, I still have been given very little information.  They won’t even give me a prognosis.  Again, I appreciate for some, the prognosis is not helpful, or is not information they want or need.  But I want to know.  I am fully aware regardless of the prognosis, not everyone falls within those parameters and nothing is guaranteed.

Having had surgery for other, more minor, things in the past, I know that there are always things I wish I had known before, but I would not have known/thought to ask without the gift of hindsight.

I follow a number of ovarian cancer charities on social media, and they regularly post people’s stories of their experience.  I read these, and yet they don’t contain the sort of cut-to-the-chase, brutally honest information I need.  I don’t feel any better informed after reading these.  I fully accept I might be the only person who feels like this, but I do find it frustrating.

I don’t have a big support network.  I have T who is my rock, and my 90-year old aunt who lives thousands of miles away, but has been the most loving, kind support.  Of the rest of my family, some don’t want to know, some have completely avoided any contact with me.  Friends?  My mother died two years ago, and the few I thought were friends walked away.  At least I know where I stand.   But, support network regardless, I do need to be informed, and that I am struggling with.

Looking back at how this all started, and my symptoms and how I viewed them, I am horrified.  Without the discovery of the lump – my cysts, I would not have gone to the doctor when I did.  That would have completely changed the outcome.

I am worried about work.  I am worried about how I will cope when I go back.  I am worried about chemotherapy, how I will cope, will I sail through it, or will it be difficult, how will it interfere with day to day life.  These questions I know, are all very individual as everyone reacts differently.  Tomorrow I meet the oncologist, and I hope that I get some further information, not least, the dates when my chemo starts.

Home sweet home

What a relief to be home, in peace and quiet, to have my own bed, and my own food. 

Amongst the medication I had to take, I also had to inject myself daily.  Whilst in hospital the nurses injected my abdomen.  The idea of this made me panic.  I am a very squeamish person.  Luckily, they told me I could inject myself in my thigh.  I found it easiest to do if I didn’t think about it.  The one day I was thinking about it, I struggled.  I couldn’t get the needle in, then I couldn’t get it in far enough, then I couldn’t get it out.  Finally, I managed, and for the rest of the course I just did it without thinking too much, but I was so relieved to get to the end of that course and close the lid on the sharps box.

After 10 days I went to my GP’s surgery to have my staples removed (my wound was closed with staples and not stitches).  I was so glad once that was over, the very idea, never mind the sight of those staples – 31 in all – made me feel quite ill.  At least I was a bit more physically comfortable without the staples.

As part of the healing process I have to walk.  This not only facilitates recovery from surgery, but also puts me in a better position health-wise for chemotherapy.  I have been lucky enough to have had a lot of sunny days, and so the walking is far more enjoyable.   I started off very slowly, with short distances, and have gradually built it up.  The walking has also been immensely beneficial for me psychologically, as it gives me time to think, to let my mind drift, to process what is happening, and what has happened.

Back on the ward

Having recovered sufficiently I was taken to the ward where I would spend the next few days.  I had a drip in my arm, an epidural in my back for pain relief, and a catheter.   Tubes everywhere.  T came to see me that evening and I broke the news.  It was like talking about someone else and not me.  To be honest, it helped being in such a fog.  I was not in a position to take everything in at that point.

I was in a lot of pain, and sleep was difficult.  My blood pressure plummeted and I had to be monitored every hour for the next two days until finally I stabilised.

My epidural pain relief stopped on the third day due to “product failure” when part of it broke, and I was then given intravenous and oral pain relief.  My catheter was removed and I had to have my bladder scanned and the amount of urine I passed measured, to ensure that my bladder was functioning normally.  Without the catheter I was then able to move around a bit more and start building up some strength. 

Whilst in hospital I was seen every day by a number of doctors including my consultant/surgeon, and an oncology nurse.  The oncology nurse asked me how I was, as there was quite a lot of information for me to process.  I said that I couldn’t deal with it in hospital, there was always something going on, there was no privacy, no peace.  I found it impossible without some quiet time, to think clearly.

Finally, on the fifth day I was discharged from hospital.  There was some concern that my bladder was not fully emptying and so I was shown how to self-catheterise.   I was given a large bag of all my medication and contact numbers in case of a problem.

Surgery

Surgery was scheduled for 18th January.  I re-organised all my work so that someone else could handle it in my absence and prepared myself for the surgery.  The surgeon (who was also my consultant) explained the procedure which I was going in for, and what would happen should they find any sign of cancer.  Whilst in surgery, before they sewed me back up, they would test the cysts, ovaries and fallopian tubes.  This would prevent the need, hopefully, for further surgery if necessary.  I had the usual round of pre-operative appointments, consent forms, blood tests, swabs and was given a pack of information leaflets, antibiotic wash and an enema kit to be used the night before.  There is no dignity in this procedure.

I asked my surgeon how soon I’d hear the result, either way, from my operation.  She said she’d come to see me in the recovery ward, but that I’d have a rough idea by the size of my wound.  The operation I was scheduled for would require a small cut down from my belly button.

When I woke up in the recovery room, the first thing I did was put my hand on my abdomen, and I felt the dressing over my wound – above my belly button.  My heart sank.  Thank heaven for the anaesthetic and the painkillers, my head was still in a fog.  My surgeon came to see me, and explained that they had found cancer on my left ovary.  As a result, the cysts, ovaries and fallopian tubes were removed, I was given a complete hysterectomy and the lymph nodes running from the top of my abdomen down to my groin were removed.  The initial testing had been done, but is not conclusive and there is always further testing done afterwards to make sure nothing has been missed. My surgery wound ran from my breast bone to my pelvic bone.