Fun and Excitement at the Hospital

It's been a while since I've had an experience at the hospital that was anything other than routine, so obviously my body decided it was time to shake things up a bit yesterday.

Started out nice and normal, off to see the oncologist to review my latest ECG results, which showed a drop in heart function taking me from well above normal to normal, so something to keep an eye on, but not enough to stop treatment.

I popped into work for a few hours whilst waiting for my notes to make a return trip to the clinic where I have my Herceptin, and arrived at the chemo suite about 2pm for my standard 30 minute infusion. About 5-10 minutes in while I'm chatting to the nurse, suddenly my chest tightens, and I start coughing. I'm having an anaphalactic reaction to the drug. Rather than do my normal thing of assuming I'm fine and waiting for it to pass I actually mention that I feel a bit funny. The infusion is immediately stopped I'm asked whats wrong, and I explain, although by this point I'm getting dizzy and I'm struggling to breathe.

Quick as a flash I'm given piriton, hydrocortisone and oxygen, and a doctor is called to take a closer look at me. As I'm hooked up with my port, everthing is given intravenously, so within a few minutes I feel much better, and am just left with a tight feeling in my chest - a bit like the sensation when you are somewhere humid and it's uncomfortable to breathe deeply. My oncologist is called, and discussions are held over what to do with me.

Within an hour I'm strictly under observation, all treatment for the day is stopped. The decision is that I can have another try with the treatment (as I've had 4 previosuly with no problems) but to return to a piriton pre-med and a much slower infusion - basically back to the trial run stage. If I run OK with that they'll consider upping the speed of infusion, but I will probably always need the anti-histamine.

By 4:30 they were ready to release me (Simon came to collect me as piriton makes me very sleepy), and I was able to go home and sleep on the sofa for a few hours. I was told I was lucky as allergic reactions aren't usually caught so quickly, and you can end up in a serious condition very quickly.

Seeing as I'm back in a work fram of mind I'll review my key learnings from today:

• Even drugs with no side effects can be dangerous and bite you in the ass.
• Never assume that it's nothing and it will get better by itself.
• It is OK to 'bug' the nurses, that's what they're there for. You do not have to apologise for having an allergic reaction.
• I love the NHS.

Back to Work

Yesterday was my first official day back at work, and I managed about 5 hours in the office, mostly catching up on a few things and sorting out my new desk (we've moved offices in my absence). By the time I realised I'd been reading the same sentence for 20 minutes, I figured it was past time to go home.

It was lovely to be back, but I'm very glad I'm on restricted hours and days - its 11:30am and I have only just got up. I knew that I'd be tired today, as I knew I over-did it slightly. Unfortunately I only get about a 10 minute warning before suddenly being very tired, and its a 40 minute drive home!

I'm back in again tomorrow, and then Friday is my first Herceptin treatment at Bracknell.

Starting to Get Back to Normal

It's been an interesting few weeks for me, as I'm starting to feel like myself again. While I still get tired quicker than normal, its a different kind of tired to the bone-aching fatigue I've had until now. The more I do the better I feel (up to a point). I'm even starting to look like myself again (albeit with a very short haircut and a 2 stone weight gain) - my face is much less puffy than it was, my eyelashes are back and I even have eyebrows again.

I've been suffering on and off over the last few months with a pain in my leg. It's not too bad, but it's been niggling at the back of my mind that I should get it checked out, so I set up an appointment with my oncologist last week. I knew that it was likely to be nothing, but occasionally I would start freaking out about it and assume the worst (one of my risks is a spread to bone cancer, and bone pain is a symptom). I was sent off immediately for X-Rays on my leg and thankfully they didn't show up anything. Most likely reason for the pain is that I have shin-splints, because I've been inactive for a while and with my numb feet I'm probably stomping a bit. It's a big relief that it's nothing sinister, but I suppose that I'll always have to deal with random panics over strange aches and pains.

I also went to see my GP, who has agreed that I can start getting back to work in the next few weeks, provided that my 3rd Herceptin treatment went without incident - which it did. Some people I've spoken to have been surprised that I'm so keen to get back to the office, but I just want to get back to being a normal person. Cancer has already stolen 10 months of my life, and I don't intend to let it have any more.

Second Herceptin

I had my second Herceptin treatment on Friday, which went without any hitches. My port was accessed nice and easily this time round, and again I had no reaction to the drug. I have to have one more at Reading to prove I'm definitely not allergic to it, and then the rest will be done out of Bracknell.

I'm starting to feel better recovering from the radiotherapy, my skin is still a little sore, but I'm much less tired. I was even able to do some digging out in the garden yesterday, and I've started a little exercise regime to help me start getting back into shape.

I've been carrying on with my embroidery as well, here are my last 2 projects, converted now into cushions:

And I'm Done!

Monday was my final radiotherapy treatment, which means that apart from the Herceptin treatment (second one is due this Friday) I'm through with my cancer treatment!

I feel relieved, of course, and glad that it's over, but I can't say I feel over-joyed. That's because end of treatment doesn't mean the end of the cancer road, and I'm not certain when or even if that end will be. Perhaps in 5 years when I'm through my remission period. If there is no recurrance of cancer within that 5 years, then my risk of recurrance drops back to normal, due to the type of cancer I've had. However, within those 5 years, my risk is significantly higher - I don't have numbers from my oncologist, but from research I've done, I'd estimate that there is between a 10-20% chance of recurrance. That may not seem that huge, but if I do have recurrance, it will almost ceratinly be a spread (and so terminal), rather than another dose of breast cancer. This means I'm likely to become a total hypochondriac over the next few years, worrying about every single ache and pain and cough.

Radiotherapy treated me fairly well. My skin never got worse than being slightly red, and I just need to be careful not to expose it to the sun for the next few weeks. I am now feeling quite tired, altough thats just as likely to have been from having a very busy weekend - we went to Stratford upon Avon to see my old theatre chums performing at the Courtyard Theatre (they were amazing). It's started me thinking about starting up a creative hobby again, if not theatre then maybe something musical instead.

Radio and Herceptin

I've finished my first full week of radiotherapy as of yesterday, and am still feeling pretty good. My skin doesn't feel any more sore than after the first session (and it helps that I had almost 4 full days to recover between Friday morning and Monday evenings dose). Getting to the Bracknell clinic has been fine, and even getting in and out of Reading on Friday and Monday wasn't too bad.

I'm doing well on the energy front as well, probably helped by the last 2 days spent helping to construct the garden with my Dad and Simon, althugh today I'm having a restful day as I have an aching right arm. Having said restful, I've been setting up construction plans and drawings and talking to landscapers, but certainly more calm than the last few days.

I had my first Herceptin treatment on Friday, I was at Reading hospital by 8:30 (ish thanks to traffic), for radiotherapy, then up to the chemo suite for the Herceptin. Chemo suite there is much bigger than the one at Windsor, and is in what must be an old childrens ward from the 1920s - the walls are tiled in part with pictures from fairy tales, so it wasn't too bad of a location to spend the whole day. It took a fair while to get going with my treatment, as there was a problem getting into my port. I'm still quite swollen from the op, and the port seems to have shifted upwards to under the incision for it, so after 3 attempts at getting in (not painful, as I'm numb still on that part of my chest, but a bit uncofortable), and then an x-ray to check the positioning, they decided to try and go in on my arm as I was getting more swollen from the attempts. Thankfully there was a specialist vascular access nurse on duty through this, so she was able to put in a canula in my left arm using ultrasound. By my next treatment, the port should be fine, but a little annoying that they weren't able to use it.

By the time I was hooked up and ready to go for the Herceptin, it was 11:30, and through the 2 hour infusion I had to keep my arm straight, so wasn't able to do my embroidery. Thankfully I had Kate with me for company, and the lady in the next seat was chatty as well, so it passed fairly quickly. Infusion was done by 13:30, by which timer Kate had managed to find the M&S inside the hospital, so we were well provisioned with sandwiches, fruit and chocolate. Then I just had to sit and wait for 4 hours and hope I didn't have an allergic reaction. For this one I'd been given some Piriton before hand, so I was a little sleepy, but aside from that, no reaction. Some ladies report feelilng a little off for a day after the infusion, but I've not had any problems. Eventually, at half 5 I was allowed to go home having passed a pretty dull day sat in a comfy chair. Once I was detached from the drugs I did at least manage to get some stitching done.
Next Herceptin will be 30th March, where I'll have a 90 minute infusion and then go straight home.

Just 9 more radiotherapies to go and then the tough bits of treatment are over, finally.

Back in Treatment

I've had about 6 weeks free of treatment, which has been a good break and has allowed me to return to a reasonable level of wellness. Aside from the problems with my feet, I'd say I'm now running at about 85% of my normal healthiness. I feel fine as long as I don't do too much, but I get tired pretty quickly if I overdo it.

My right arm is showing no signs of lyphodema so far, and I have recovered nearly full movement - although my arm is pretty weak and still stiff and the scar under my arm is nice and neat and healing nicely.
My left arm seems to be recovering from the chemo trauma, but my veins are still very poor, and the arm aches if I over-extend it.
As for the results of the mastectomy, I couldn't be more pleased. Once I have a bra on (and I've cunningly removed the under wire from the right sides for comfort) you cannot tell that I have a false breast - it looks totally natural. It doesn't feel it, because the implant is under the muscle, so it's pretty solid, but not as bad as I thought. Bra off and it becomes fairly obvious thanks to the horizontal scar in place of a nipple and slight lumps and bumps, but the scar will fade down and I can be tattooed, but I'll see how I go on that - at the moment all my skin on the right side is pretty much numb, but if it recovers, I'm not sure that the pain would be worth it! Physiologically the mastectomy has been a lot easier than I thought, thanks to the excellent result, I cannot recommend my surgeon (Mr Simon Smith) enough. The effects of the radiotherapy may damage the result a bit, but I'm starting from a great position (plus here being young is an advantage - my skin should recover pretty well from the treatment).

The most difficult thing over the last few weeks has been that I feel well, thus I feel guilty that I'm not doing anything, and generally being useless. I have been able to go into work a few times, which has helped, and I'm able to do more cooking. I know that I shouldn't feel bad but I'm one of those people who always feels like they have to be achieving something in life - even more so now that life seems shorter and more precious. It's kind of a strange place to be - in between being ill and being well enough to get back to normal. A bit like the last day of having the flu, when you're not really sure that you're well enough to go into work, but well enough to feel guilty for being sat on the sofa in your pyjamas at 11am - but stretched over weeks. I'm lucky that I have a hobby that has helped to keep me going - I've become an embroidery fiend. I finished my major project that I started the day before I went into surgery last week.

Size approx 35x30cm, and about 22 000 cross stitches

Some of my other works over the last few months:

Mistletoe Cushion

Noel Banner

My new project - A Bee

But I digress...

I am back in treatment. Last week I had a short surgery back with Mr Smith to implant a port into my vein so that my Herceptin can be administered. My original plan was to have this done with the Oncology team over in Windsor, but they seem to have forgotten to set it up, so I arranged it myself. Whilst I was waiting to go down for surgery I got a call to say that my Herceptin treatment will start on the 9th March at Reading (for the first 3 sessions - after that I'll go to Bracknell) which gives just enough time for me to heal up before they use the port. I have about an inch long scar just above my implant where they went in for the port, and a rather extravagant bruise.

Radiotherapy began yesterday, having been in for planning a few weeks ago (where they took measurements and tattooed me with dots to help line up the machine). I'm having this done at the new Bracknell Cancer Centre, which is about a 10 minute drive from home. The place only opened in May 2011, and it's rather nice - very modern, and short waiting times as they're just ramping up their services. It even has a Costa Coffee bar where I can get my espresso fix. I was in for my first appointment yesterday, which took just under an hour. The rest of my appointments are booked in for 15-20 minutes. It really is very simple. I lie very still on a bed, get positioned and then zapped. Repeat twice more and then I'm done.
The side effects are cumulative, after yesterdays my skin is a little tender, like a very minor sunburn. I've been given some aqueous cream to apply twice a day and there are other precautions I have to follow - no soap or deodorants containing metals (e45 soap is fine), no exposure to the Sun (not a problem on a rainy March day), no shaving under my right arm, use warm not hot water and drink lots of water.
14 of these to go, and then just the Herceptin treatment. Soon I'll have my life back!

The Dog Days are Over

It's official: NO MORE CHEMO!!!111one!!! w00t!

I'm extremely happy about this, and so, so relieved. I have been planning in my head for 3 more cycles, and to have that cloud lifted is great. Especially as (and this is a silly reason I know) my hair is starting to grow back - 2 months after last treatment. To think that I'd have another 3 months of chemo, and then another 2 months before my hair is back at the feeble and patchy state it is now was most depressing. I also noticed yesterday that I have a line of very short lower eyelashes.

So next up on the treatment wheel will be:

• Genetic Testing - booked in for Friday to have blood tests to determine if my cancer has a known genetic base. Given my age, it's almost certainly genetic, but only a few specific breast cancer markers have been identified so far. I wonder if the samples are used to identify new ones, if the current known markers come up blank... I like the idea of helping to move the science forward, even only in a tiny way.
• ECG test - before I can have Herceptin treatment my heart function needs to be tested to make sure it's nice and sturdy, and also to get a baseline reading, as Herceptin can cause heart problems, so this will be a fairly regular occurance for the next year.
• Get a port put in. My veins are all broken, and I'll need 13 infusions of Herceptin, so I'll need an alternative to an arm vein - minor surgery required to put in a tube in a vein in my chest so that this can be done.
• Radiotherapy: 3 weeks of daily treatments, which can be done in Bracknell, just down the road, which is a bonus. Sideeffects: sunburn like effects to the skin, tiredness, potential lung and bone denisty damage
• Herceptin: this can start at the same time as the radiotherapy. Apart from potential heart issues, pretty much side effect free, just need to go in once every three weeks for an infusion, which takes about an hour.
• And then I should be done, just be hoping it doesn't come back!

I'm really looking forward to getting my life back, sorting out our garden, going back to work, and generally having a normal life again. I'm nearly there. I should be well enough to at least start going back to work in a few weeks, which is probably a good thing, as I'm getting worryingly addicted to Skyrim...

Waiting for a Decision

Tuesday was my post-op meeting with my oncologist to review what to do next with my treatment. Unfortunately my pathology results hadn't arrived with them through the post, so until I arrived with my copy they'd not been seen - although they had received a letter from the surgeon.

There is some debate as to where to go with my treatment next. For certain I will be having Herceptin and radiotherapy - including on my neck - as the lymph nodes there are the next place the cancer could go. The debate remains around whether to go for more chemo - the gut feeling of my oncologist is to have some more, but that's not the opinion of the oncologist I saw in Essex.

We had a long chat with the oncologist about where to go next - the problem is that in many ways I'm a borderline case, so it's difficult to make a decision. The oncologist is naturally concerned that I've only really had 3 chemotherapy treatments that were effective, and he would rather over treat and reduce the risk of recurrence. I'm obviously concerned about having a further chemo unnecessarily, especially given some of the side effects I'm still suffering with - my feet are still totally numb, and there is a serious risk of this worsening with more treatment.

Given that I'm borederline and the problems with the numbness, the oncologist is going to canvass some further opinions from his colleagues to decide how best to proceed. I'll obviously go with the recomendation - it's difficult to underestimate how little I want to have more chemo treatment but I'm not going to gamble my life on it.

I'll be back to the hospital next Tuesday to hear what will be happening next. In the meantime I'm hoping for the best, but planning for the worst.

Good News

Just been to see my surgeon for the pathology results, and have had good news.

There were no cancer cells left in the breast just precancerous ones, which is great news, chemo has worked well. Over in the lymph nodes 2 out of 12 were cancerous. Generally fewer is better.

From the cells in the lymph nodes they were able to tell that it was HER2+ which is the best outcome left to me given that I already knew it was hormone negative. This means that I'll be given Herceptin treatment, which as far as I can tell halves the chance of reccurrence.

I'll need to wait until I've spoken to my oncologist but the likelihood is that I will have radiotherapy followed by 18 Herceptin treatments. Generally these are given over a year- once every three weeks, and there are very few side effects. Highly unlikely that I'll need any more chemotherapy, so I may be able to head back to work in just a few weeks time, which is great.

Itsss my Birthday

No big birthday plans for me this year, funnily enough, just a take away and maybe a cheeky glass of fizz (for medicinal purposes only, of course).

I will be heading to the hospital this evening though to pick up my pathology results, and hopefully I'll be able to update later with some good news.

Recovering Nicely

I've been settled back at my parents house since Friday night when I was discharged from hospital, and I've been feeling alright for the most part.

I went into Springfield hospital on the Thursday around lunchtime. Spent a few hours hanging around whilst I waited for my turn on the list. As I have medical insurance through work, I was lucky enough to be able to go privately which meant I had my own room to settle into. Given the surgery I was having, the extra privacy was appreciated. I was visited by the nurses, the anethatist and the surgeon.

The anethatist did very well to put me more at ease about going under, and said he'd try to ensure I wasn't sick afterwards (as I have been in the past) and went through the pain that I could expect to have when I came round. It's the first 20 minutes after you wake up that were to be the worst- so if that wasn't too bad, I'd be likely to be OK pain wise, and that the underarm would likely be the worst.

Mr Smith, my surgeon also came in to go through the potential problems so that I could sign the consent form. Nothing unexpected came up, and he also demonstrated where my scars would be- basically a line across the middle of the breast and another line in my armpit, and that I'd be left with a numb patch under and on my right arm.

Simon and Mum came with me to the hospital and stayed until I went down for surgery- about 4.30. They managed to keep me pretty calm all afternoon and although I had a bit of a moment as I was wheeled out of the room I was a lot calmer than I thought I'd be by the time I got to theatre.

Once in, it took a while to find a decent vein, and I remember complaining that the pre-med made me see double, but I don't remember the feeling of going under- I just had some weird dreams and woke up in recovery. As I woke up the surgical team were talking about the "release roger" scene from The Life Of Brian, so the first thing I said was "Roderick" which amused everyone. Apparently it's unusual for patients to quote python as they come round.

My other memories of being in recovery are pretty vague, but I was given some nice strong painkillers and a special drain was put in under my arm to stop me swelling up with lymphatic fluid. I got back to my room about 7.30, by which time Simon had come back to the hospital. There was a drink and some sandwiches that were most appreciated.

I stayed over night and until late on Friday, and had post op visits from the surgery team and a physiotherapist, who has given me some exercises to ensure I recover as much movement as possible in my arm. Apart from having the drain in however, I felt pretty normal- actually less tired than I had in the few days before I went in. I've been able to keep the pain under control with paracetamol and some anti-inflammitories. I did have some Tramadol (rather than morphine) the next morning, but it made me feel very woozy. Which was alright at the time, but I didnt want to take any more, as it seemed unnecessary given that I was in no pain if I was still.

So 3 days on, I'm feeling remarkably well. I'm able to move my arm quite freely, although gently, and the excercises have been helpful. I still have the drain in, which has to be emptied from time to time, but that will be removed tomorrow evening. Once that is gone, I think my movement will improve again. The implant still needs to be inflated to expand the skin, but the shape is nice and I think I'll get a good result in the end.

Overall it seems I've been very lucky- no nerve damage and no other major issues and I'm recovering quickly. I should get the results from the pathology early next week, which will inform the next stage of my treatment. There is even a small chance that I won't require anything else.

Post Op

I'm through the op now and feeling OK all things considered. Pain is largely under control but am about to be given some morphine to knock it on the head.

I'll post more about the op later as I'm having to type left handed on the iPhone, which is a challenge. My right arm is a bit useless for the moment, it's quite painful to move it, although its the chest muscles that hurt rather than the arm. If I'm still I'm alright. Not feeling too bad from the anaesthetic- last time I had one I was quite sick, so fingers crossed that won't happen this time.

Plan is for me to head home late this afternoon once the drain under my arm can be taken out.

Treatment Break is Nearly Over

Thanks to the change in my treatment schedule, I was able to enjoy a relatively healthy Christmas and New Year, which was mostly spent with family. It's taken me a long while to get over the last dose of chemo, and am still suffering from some odd side effects - i have numb fingers and toes and my muscles have a tendency to burn if I put them in certain positions. I can't knell down for example, as the lactic acid starts to build in my thighs as soon as I do.

Apart from that and still getting very tired, I'm mostly over the chemo. Now all I am suffering from is terror for the upcoming surgery. As I mentioned before, I'm scared of being put under. I think it's now fair to upgrade that to a full on phobia. I'm not sleeping much in the run up, and it's mostly the anasthetic that is giving me sleeplessness rather than the actual surgery (that just makes me cry rather than be scared). I'm very thankful for my Kindle at the moment, as it's helping me get through the long sleepless nights, and distracting me until I'm so tired I fall asleep anyway.

There has been a suggestion that I should take some sleeping tablets, but I don't like them either, so I suspect by Thursday I'll be a walking zombie before they even approach me with the needle.

I'm packing up to driver over to my parent's house today, as I have to go for a pre-op meeting tomorrow morning. I suspect I'll be staying there a few weeks. Simon has taken Thursday and Friday off work, and will join me at the weekends as well, but I'm going to need a lot of looking after and it's not fair for him to have to take holiday to look after me - I'd rather we use the holiday to actually take a holiday somewhere this year.