AWOL

Oh dear, I’ve not been a very good blogger recently have I!

My excuse is Taxotere – it is a right bitch. For those of you that have not read my earlier chemotherapy related posts, Taxotere is the second type of chemotherapy  drug regime I am having. I started with four rounds of FEC every  three weeks (See my FEC Off post for details) and am now having four rounds of Taxotere.

 

I should have had my third dose on 5th April but it got postponed and I actually had it yesterday on 8th April. As I have been AWOL I thought I had better post a bit of an update on why and how I’ve been getting on since my last highly depressing post.

 

Where to start… I guess with a chemotherapy side effect update. Tax is certainly different to FEC – much more physically hardcore but still loving the no puking. Side effects of note are:

  • Bone aches (like when you have flu) – these kick in on around day 3 and last a few days. I’m ok controlling them with ibuprofen and paracetamol and have not been bedridden like I have heard other people say. Not nice but tolerable.
  • Oral thrush. This is horrific and makes everything taste like absolute shite for about 14 days. I did have an oral drug called Nystatin from the GP but it doesn’t have much impact so today he prescribed me another tablet form drug called Fluconazole. I have also got Oraldine mouthwash, some probiotic drinks and some Manuka honey to take. I’m hoping the four pronged attack will help in some way as I can’t tell you how depressing the mouth mank is!
  • Weak limbs and breathlessness. Oncologist says I have low haemoglobin levels and this why my fitness is utterly buggered. I get overtaken by grannies when walking these days – not good. I can only describe it as the feeling when you actually have just done lots of exercise and get wobbly legs / arms and feel all funny. That’s me after about 200 yards.
  • Swollen legs, arms & ankles. Attractive!
  • Burn like skin reaction on my hands and feet. Ouchy.
  • Nose bleeds and bloody crusty snot that is sore. Attractive again!
  • Sore and tingly fintertips – apparently this is called neuropathy. Mine only lasts for the first week or so which is good as I think it can be an ongoing problem for some people. Makes doing my bone marrow boosting injections a bit fiddly though!
  • Nails have gone a bit funny but are still hanging on – I’m told they are likely to fall off at some point but we will see.
  • Eyelashes have now fallen out and eyebrows are doing their best to follow. I just keep getting more and more attractive.
  • Obviously my hair is still falling out and I have a very large bald patch all over the top of my head. The good news is some of the hair has started to grow back. The bad news is that following the not very attractive theme it appears to be mostly white and I’m not supposed to dye it for six months.
  • The increased dose in steroids is causing an amplified steroid rage / downer situation which is horrible. Just have to try to muddle through those feelings without shooting myself until they go away.
  • Steroids also make me want to eat but oral thrush means I’m a bit limited in what I want. Well, I don’t really ‘want’ anything but just keep trying stuff to see if it will taste ok. It never does but this does mean I’ve gained about a stone in weight. Marvellous.
  • Steroids also mean a distinct lack of sleep. I really do hate steroids!!
  • Hot flushes after chemo – quite intense for a few days but then much better than they were on FEC. This could also be related to when I have my zoladex injections. I had chemo yesterday and zoladex today – had a terrible sweaty night but I’m not sure if that is because I was due the zoladex or just had the chemo. Probably both.

So thats about it. Fun times…

I think the worst bits are the oral thrush and the weakness in my limbs. I did have days of feeling ‘normal’ on FEC but I don’t on tax – possibly this is also just due to the cumulative effects of being in my fifth month of chemotherapy. I am still working though – although I have taken the day off sick today. I am finding being around most people increasingly difficult though. It is just difficult seeing other people all happy and carefree… oh and two more people are pregnant. My sister in law and the girl who sits behind me at work. Great for them obviously – but another reminder that our baby hopes are minimal to say the least.

 

On a positive note I now have only one more round of Taxotere and then I am fully poisoned. This also means I will have my PICC line removed soon – HURRAH!!!! As my last dose was postponed I don’t know if my next lot will be 26th April as originally planned. My blood test will be three days early so may come back as not good enough results to go ahead on that day in which case I will be postponed to 29th April. I just really hope bloods are ok by then – I don’t want to be extending this shit into May.

 

In other news I have my psychologist appointment tomorrow where I have to convince them I am of sound mind to be requesting bilateral mastectomy (as one side will be risk reducing). I have had a bit of a ‘good boob scare’ since my last post as I found a suspect lumpy bit and had to go for a scan to check it out. Thankfully it turned out to be fine but did kind of confirm the fact that keeping the ‘good’ boob is just going to cause increased stress and worry. Hopefully the appointment tomorrow will be ok – my surgeon and the geneticist I saw both agree that bilateral is the way to go so unless I do or say something really stupid it should be ok.

 

During my ‘have I got cancer in the other boob too’ episode I also had a horrible appointment with an Oncology registrar. At my sixth pre-chemo appointment I saw a registrar who was just rubbish. Wasn’t prepared at all and didn’t seem to know my situation. He proceeded to tell me that at my 7th appointment we would discuss my radiotherapy schedule. News to me as Dr Charlton (my actual onc) had said as things stand I would not be having radiotherapy. He was wrong – I knew he was wrong. He didn’t even know that I was having more surgery. Once I said that he backtracked and said “oh no, I meant after surgery” which was obviously rubbish. Then my least favourite Breast Care Nurse arrived so he could examine my new lump and tried to say I had misunderstood re the radiotherapy. It was just a horrible appointment and made me feel really unsure about everything. So that plus the lump worry sent me into a bit of a downer to say the least!

 

On that note – I have also now seen a geneticist and had blood taken to test for the brca genes. It was quite a depressing appointment – she said she would put money on my having a brca gene mutation. Great. I should get the results in about five weeks. I so hope she is wrong.

 

I have my next appointment with the plastic surgeon on 16th April and I am hoping to get at least a good idea of my surgery date then. I have had to go to an appointment with a Breast Care Nurse a couple of weeks ago where I had to look at pictures and listen to her talk about stuff I’ve learnt from the internet. Tbh it was a bit of a waste of time but it’s done now. She said she thought my surgery would be 3 to 4 weeks after I finish chemotherapy – so not much time to start feeling better! I guess it depends on surgeons diary though – and I’d rather get it out of the way sooner rather than later.

 

So yeah – I have just been a bit caught up in the whole cancer merry-go-round for the last month. They seem to have decided to wait until I look and feel my absolute worst to have all these genetic / psychologist / surgery appointments and it’s all just a bit full on, on top of my total lack of energy and various ailments. I have not been eating well at all so I have no food updates. I did make soup this last weekend with kale and quinoa and all that good stuff – using up some veg box items from the box we forgot to cancel. Have decided to aim for a soup diet for this round of rancid mouth. I can’t taste anything anyway and it might help me lose a bit of weight!

 

We did go away for a couple of days a few weeks ago and went to London Zoo and Chessington World of Adventure. We had special tickets to view London Zoo’s new tiger exhibit before it opened to the public. I was really pleased with how my stamina held out on both days and it was fun. We only stayed for four ish hours on each day and I think that is what caused the leg / ankle swelling and I was utterly fucked by Saturday but I’m really glad we went! I did take my camera and will post some pictures soon. We did mainly zooing at Chessington as we went on my worst bone ache days so I wasn’t much for rides. We did go on a couple of rides too though. I just took lots and lots of painkillers!! It was a shame that the tiger exhibit opening didn’t fall on the following week when I would have felt a bit better but we still had a good time and it took my mind off things a bit.

The new tiger exhibit is great btw – and the two new young tigers are beautiful :o)

 

So that’s what has been going on in my life the last month or so. I’m resting today and then this lot of side effects will kick in. I’m annoyed because my worst days will now be next saturday and sunday rather than thursday and friday. It is my neices birthday party (just family) on saturday though so I will be at least sitting in a corner with my party hat on. Fingers crossed these new drugs work and I can have some cake and actually taste it! Right, I’m off to take some more evil steroids… I will hopefully be posting a non-cancer related post soon.

 

 

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3 responses to “AWOL

  • NotDownOrOut

    I think this is my first visit to your blog (not the last). I have to compliment you for maintaining sanity through all these trials. One of the sad things I learned after blogging and reading so many blogs is the number of people who have to exercise great patience through man-made mix-ups and misadventures. Maybe that’s why we’re called “patients.” Maybe we should become teachers. Hang in there. It sounds like you are doing well (as well as anyone can when in treatment).

  • sallyshelmerdine

    Good luck tomorrow, I am sure you will be ok, you sound like you are in a better place to last time xx

  • daysleeper40

    Thank you both very much – the psychologist appt went well so it’s been a pretty positive day… in a weird “I’m going to have my boobs chopped off way” !

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