Wednesday, 13 February 2013

And we're off.

Just about to leave for Chemo number 5. I'm sure I should be happier than this, but all I feel this morning is emotional and tearful. 

Tears of joy to be near the end? Those would make sense. I'm not sure that's what I'm feeling though.

More fear, actually, I think. I've just started to get used to this horrific cycle and soon it's going to change to Radiotherapy, then after 3 weeks of daily "tanning"  it will change again to Herceptin, and I don't ming telling you I'm terrified of starting that.

I suppose for now I'll just have to get on with it - stiff upper lip and all that, but boy oh boy the pressure is starting to mount. 

Wednesday, 6 February 2013

I've just lost 4 days!

Well, what a busy few days I have had. Well, I say busy - I haven't accomplished anything, but I seem to have lost 4 days somewhere....

I felt rather delicate last week post chemo, which was expected, and by the time Thursday came round was nearly back to normal. More tired than I hoped to be, but bearable. I went to work for a few hours on Thursday, in preparation for an auction of toys on Friday. Managed to get to work by 8am on Friday morning, and again, other than feeling a bit lethargic was fine.

I didn't feel much enthusiasm to start the auction at 10.30 so I asked a colleague to take the rostrum until I felt I could take over, which worked well and I did the last hour or so, which did wonders for my sense of self worth (chocolate teapot syndrome).

After the auction I will admit I wasn't much use, and by the time it got to 3.30 I was starting to get a bit shivery so went home. Things started to go downhill after that, and my temperature start to rise for the first time since I started chemo. I managed to feed the smallest his supper - fortunately, my daughter was at a sleepover so I didn't have both of them to look after. My husband came in at 6 and whisked J off to bed and made sure I ate some soup. 

I wasn't improving much and was still freezing, so decided to go to bed and cuddle my electric blanket. Fortunately we checked my temperature before I disappeared and it read 38.2. Not ridiculous, but the advise is to ring the acute oncology team if it goes higher than 37.5 which we did, and they asked me to go in to be checked out. Bother.

By the time we got in it was 9pm. My temperature was re-checked and found to be 38.9 so slightly more serious than I thought. We needed to have blood taken, and fortunately they were able to get a paediatric nurse to come and take blood from my port and leave the needle in for antibiotics etc, otherwise they would have had to have fitted a cannula which I wasn't too keen on, having gone to the hassle of having the port put in in the first place. 

It felt like it was taking ages for the bloodwork to come back, and as I clearly wouldn't be allowed to leave I sent my poor husband home to get some supper and some sleep.

Anyhow, the first thing they check is to see whether your neutrophil count is low. Neutrophils are, so I have learned, the most abundant white blood cells found in humans, therefore if your neutrophil count is low, it indicates that the immune system may be struggling to fight an infection, be it viral, or from a specific site such as my port.

We eventually got the blood results back and my neutrophil count was much lower than expected (0.1 I believe rather than between 2.5 - 7.5) and within two minutes I was whisked into a side room so I wasn't put at risk of catching more germs from any of my other inmates. 

I was extremely relieved to be moved, as it was quite distressing having to watch the very elderly lady in the bed opposite try and understand where she was, why she was ill, and why she couldn't go home.

I spent the rest of the night barely sleeping between doses of antibiotics and two hourly obs. I think that I was about 2am by the time I had a chest X-ray and was put back to bed, and I was up at six.

Saturday was largely uneventful other than a visit from the on duty oncologist who laughed and said I must be joking when I asked to go home!. To be honest, I was feeling pretty lethargic and shattered so the prospect of lying round in bed wasn't that unappealing. Bed at home, with my own creature comforts would of course be much better, but I was so tired that I was just relieved someone else would be making the decisions for me. A definite sign, for those that know me, that I wasn't well. Monday would be my release date, all going well.

I was prescribed a series of injections by the oncologist, to encourage my bone marrow to produce white blood cells more quickly. Extremely clever drugs. The only downside is that the jab has to go into my stomach, but it wasn't as bad as I feared.

I slept on and off most of the day - I was woken lots of times for obs and new drips of ab's etc, and the odd bit of food, which wasn't as bad as I feared it might be, except for the cardboard cornflakes at breakfast time.

My husband visited between 2 and 4, which was lovely - I definitely needed a hug. He was shattered too so whilst he would happily have come back again in the evening, we decided that he would be far far better to get some rest and come back again with the children on Sunday. I started to go downhill and get the shivers just before he left, and when my temperature was taken it was just under 40 degrees. Not good. So, a good dose of paracetamol, and I sat/lay with windows open, using cold flannels and a bowl of cold water to put my feet in to try and get my temperature down.

I think that it eventually broke around midnight, but I was back on very regular obs, not least because my blood pressure had dropped quite considerably. One of the nurses told me it took her about 2 minutes to wake me up which worried her a little, but I'm pretty sure that it was just because I was so so tired. I think the lowest it went down to was 75 over something or other - I'm normally around the 120 mark..... hey ho.

Sunday was fairly unremarkable. It started with a rise in temperature and the shivers first thing, but improved rather drastically after that as I was allowed out for a walk!! Admitedly I didn't go far as it was freezing outside, but I felt rather less like an inmate afterwards. My blood pressure went up a bit after this, which made everyone a bit more relaxed about me too!

I had a lovely visit from my husband and children just after lunch. I think the kids coped really really well. They only lasted about an hour, but in fairness other than play with the electric bed and look at the garden out of the window (which, to my great annoyance you can't actually get to), there was very little to do. There were no tears on leaving, which was a relief - I think that the promise of going to a playground on the way home helped considerably. I love the fact that my children are so easy to please!

Another boon to Sunday was the discovery of the free hospital wifi! My husband kindly brought my iPad up to the hospital, so I was finally able to make contact with the outside world which cheered me up no end.

Slighly annoyingly, the shivers that I'd had for a couple of hours started to get worse - not helped by the fact that it took nearly 3.5 hrs to get 2 paracetamol from the nurses....I know that they are very busy, and visiting times make it worse because family members often want updates on their loved ones, but still, it was a bit annoying... I eventually got dosed up, and my temperature went back down without too much hassle.

I had another visit from my husband in the evening which was really really nice. It isn't often that we get 2 hours to actually sit down and talk without interruptions! We went for a walk round the hospital as well, which helped to stretch my back out somewhat. I seem to have one of those bodies that complains if it doesn't do very much..... I usually walk between 2 and 4 miles a day, so having been in hospital for 2 days I was really starting to seize up.

After my husband left I got the predictable shivers etc so had another dose of paracetamol and got ready for bed, determined to get some sleep. 

I was woken for anti-biotics at 10pm by a lovely nurse that I hadn't met before. She was far more knowledgeable about the use of portacaths than the other nurses, and confirmed that I had been right to keep asking about a Heparin flush for the port -  this is used to stop the blood clotting and blocking it up. She confirmed that she would order a dose, which she would give at my next set of obs, so around midnight.

Midnight duly arrived, and not only did I get the Heparin, but I was also told that I was going to be moved to another ward, which is all side rooms and often used for private patients! I'm not sure who I had been nice to to get this treatment, but on the basis I didn't know how much longer I would have to stay in, as I was still Neutropenic, it sounded great to me. 

I think that I was moved down by about 2am, quickly settled in, had a dose of paracetamol, and was advised I'd be left alone until 6am. Bliss! 

It was a huge relief to have been moved - for the silence if nothing else. No dementia patients screaming, and far less noise from the almost constant sound of the nurses being bleeped. I think I slept quite well, other than having to sweat through yet another fever..... I was fine by morning and felt much more human having finally had a decent period of unbroken sleep. 

You know you've got kids when the prospect of 4 hrs unbroken sleep sounds like bliss!!!

After the normal obs, shower, breakfast there wasn't a lot to do other than wait for someone to tell me whether I would be free to go or not! I actually ended up with a visit from not only the duty oncologist, but my own oncologist who was really rather jolly and had clearly just popped in for a chat! Bearing in mind how stand-offish he was to start with, I was particularly surprised to get a hug and a kiss! Everyone, I'm pleased to say, confirmed that my Neutrophil levels were now at an acceptable level so I would be allowed home once I'd collected all my drugs. What a fab result!!

I had a great visit from two friends in the morning too, which was lovely. I also managed a walk around the outside of the entire hospital which was wonderful in bright sunshine, albeit with a bracing wind.

My husband arrived at about 2.30 and we sat and played scrabble whilst waiting for my drug delivery and for my port fitting to be removed. Rather annoyingly and I suppose, predictably, my temperature started to go up and the shivers returned just as we were thinking about packing up, so I had to go down the whole obs and paracetamol route again whilst waiting for the on call doctor. Fortunately, he decided that I was capable of reacting to whatever my body decides to throw at me and agreed that I could go home anyway, on the promise that I would ring for advice if needed and return if required. Phew! A lucky escape.

We quickly packed up and headed off to pick two very excited children up from nursery. My eldest had been heard complaining to her brother that "it isn't fair, I want mummy to come home now", and on Monday morning, the youngest was wandering around asking "where's mummy?". Very gratifying - it's always nice to be missed!

All in all, despite ranging from being colder than a penguin in the Antarctic and hotter than Hades, my hospital stay wasn't that bad, though I expect that I shall sleep for most of the week. I am incredibly pleased with my port. It made life extremely bearable. I have had a cannula in before, and trying to get dressed, shower etc with those attached to you is much harder than with a needle/fitting and tube in the port. It also meant that every time I had to have blood taken there was no hassle - just a quick job with a syringe.

I have to say that I felt a fraud at times for being in there - it has been a short sharp reminder that however poorly I think I might be, there are so many others who are a lot worse off than me. I've been counting my blessings again, and there are so very many of them I feel extremely blessed. 

No doubt I'll be here whinging about how tough it is at some point, but for the moment, I shall enjoy the bliss of being at home with my family, where I belong.