Part 3

Total so far £2390

Having been in a pretty positive frame of mind up until now, last week was tough. It started off bad and got worse. By the end I was so fed up of having needles stuck in me I cried quite a lot and generally felt very sorry for myself. Having said that, thank goodness this is me going through it and not my children. I would be a complete wreck if I had to watch helplessly as they suffered.

Anyway, Monday morning I went to the nurse to have my coil removed as it releases oestrogen and that is the very thing that this cancer is receptive to. The staff at the desk were not at all helpful in getting a doctor to sign my medical exemption form saying I'd have to come back and collect it another time, but bless the nurse for hanging around outside one of the doctors rooms until a patient had left so she could get a quick signature for me. She was brilliant and lovely. Most of the nurses I have come across have been absolutely great, which makes all the shittiness of it all much more bearable.

Later that day it was back to Worthing... I was fine up until the point where the man mumbled and pointed to the hospital gown. “The slit goes up the back”, as he walked off. Not sure I’ve worn one before, at least not in the last 25 years. I sat with my shopping basket of clothes (literally!), shivering as usual from the cold, and a few minutes later I was called in. I had to lie on a bed with a triangular cushion under my knees and they put a blanket over me to warm me up. The lady explained she was going to put a cannula in my arm and give me an injection which would make me feel like I was having a hot flush, there would be a metallic taste at the back of my mouth and my bladder would feel very warm like I needed to go to the toilet. These sensations would pass after 20 or 30 seconds. She used my bruised arm to insert the cannula into and it was really quite painful as it was still very sore from the blood test 11 days before. I had to carefully put my arms over my head and she wound the tube from the cannula round my thumb to hold it in place.

Another scanning machine arched over me. There was a clear band in the middle where I could see something spinning round and round very fast, it reminded me a bit of the inside of a spaceship. I was asked to hold my breath for short periods while they took pictures. I didn't really know what was going on and I started to feel quite strange and a bit spaced out from the fear. I had no idea if they'd given me the injection yet or not but I definitely didn't feel right. Panic can make you feel very strange.

Then I heard the dreaded words “start the injection” in a robotic tone, - just like something out of a scary sci-fi movie! - and a wave of unpleasant warmth flushed over me along with a warm pressure in my bladder and a nasty taste at the back of my throat. It felt like coming up on drugs, a bit rushy and uncomfortable. My brain felt like it couldn’t think clearly. All I could do was experience the overpowering sensations. I’m sure had I not been so panicked, or been prepared a few days in advance of what was going to happen, and if my arm hadn't have been so sore, then maybe it wouldn’t have been such a horrid experience. I was glad to get out of there and get dressed again. I felt like crying but I held back the tears. That night both my arms were so sore and my shoulders and thighs were bruised and aching from roller hockey. I felt I needed to cry to release the stress.

Tuesday wasn't much better. I went in for a PICC line, lay there for about half an hour with a heat pad on me warming up my veins, then another half an hour of watching the lady set up all the equipment, syringes, etc, cleaning my arm, laying a sterile blanket with a hole in to access my veins... Three attempts later I was crying in pain from so many needles being stuck in me. My veins are so small they couldn't get the line in so they had to send me home. Two and a half hours of being very scared, used as a pin cushion and no result at the end. I was so sore by that night I could hardly lift my arms up. Because my veins are so tiny all these needles are painful for me. I coped at the beginning as I was feeling braver then, but my arms got sorer and sorer and the fear has taken over so it has got worse as time has gone on. I have a day off needles tomorrow thank goodness.

Wednesday was wig shopping, by appointment. I walked in, looked at all the wigs and cried again. Getting into a bit of a habit this week! The lady was very lovely and helped me try on a couple of long ones and explained I could dye the human hair ones and get them cut how I like by a hairdresser. I can even put my extensions in them. The fibre ones will tangle and need replacing after a few months and I can't dye them, so the choice was obvious. You get a form for £120 off plus VAT off but it still costs a lot of money for human hair.

So after the failure of plan one, plan two was that I was meant to be going back in on Thursday for another go at the PICC line. Then all being well, start chemo on Friday. I had to chase up the hospital at 4pm as I hadn’t heard from them. They said they had sent an email on Tuesday to the ultrasound team but hadn't heard back from them. I suggested they chase it up and ring me back! Within half an hour I got a call saying to come in at 9am and they would do the PICC line by ultrasound further up my arm where the veins are bigger but deeper, followed by the chemo. So now I am shit scared! But it needs to be started. Plan three - I hope it goes smoothly this time!

Thursday. D-Day! It was a long tiring full on day. 6 hours at Worthing hospital. My angel Kim was with me holding my hand again. I sat in a side room and they warmed my arm up with a heated pillow whilst two ladies hunted around for green tea for me, bringing it back in a polystyrene cup as the ultrasound lady with her Irish lilt made jokes to relax me. She gave me shots of anaesthetic first this time and once the pain of that was over, all I felt was some pushing. She made a small cut on the inside of my upper arm and threaded the line into a vein and up to my neck. At that point, a nurse had to press my ear to my shoulder to cut off the vein to my throat so that the line would follow on to my heart. The whole procedure only took about 30 minutes. It was over very quickly, but then the anaesthetic wore off very quickly too and I felt very light headed. I needed a wheelchair to be taken to x-ray as I couldn't stand very well and my arm was aching like hell. I was bumped up the queue and seen straight away and then back to the chemo ward to wait. The line was in 5cm too far so more waiting for a nurse to come down to the ward and pull it out a bit, retape it in position and back for another x-ray. I kind of wish I hadn't at that point without the dressing on, glanced at the tube going into my arm. It isn't pleasant to see a hole in your arm with a tube coming out if it!

Here it is looking a bit better with a dressing on, despite the dried blood from day 1.

The pain had eased off now and I was able to walk to x-ray for a re-shoot! Everything was in the right place now so it was back to the chemo ward again for bloods, a painless procedure now as they can take it straight from the PICC line, and another wait for results of kidney and liver function and usual obs. They came back fine so they gave me an anti-sickness injection, again into my line, another half hour wait for it to take effect... I even managed a banana and half a sandwich during these waits despite the fact that I was nervous about the ensuing chemo drugs and their effects.

So after all that pain, ache and worry, the chemo itself was just the nurse sitting there for no more than half an hour, injecting various drugs into my line. You can feel a cold flow of fluid along the inside of your arm a bit at first but it was really nothing. We chatted away, and that was it really. They gave me a big bag of drugs (after swapping the gelatine capsules for tasty strawberry melt on the tongue ones) and I walked out of there and went home.

For the next three mornings I have to take four anti-sickness tablets (steroids) and every day of my treatment I take the strawberry one for stomach acid, plus ten days of daily injections in alternate thighs from the district nurse. They sting like hell and I dread them. Every Tuesday they flush my line through with saline to stop it getting blocked and change the dressing on my arm, plus the last Tuesday before my next treatment they will take bloods from it. One telephone consultation booked at some point, but no more hospital for three weeks!

Chemo - Day 5 is the first day I haven't felt sick. The headaches have also lessened. I have felt a bit nauseous every morning until about 11.30 and then by about half nine in the evening I’m ready for bed. I wake several times during the night feeling nauseous but it helps to have my window open and drink lots of water. My energy levels are extremely low. I can manage about 20 minutes of activity, getting food, playing piano, a quick wander round a couple of shops if I get a lift into town (I couldn't manage the 20 minute walk in now), a half hour chat with a friend, and then I need to lie down for several hours. My appetite has gone a bit but I'm now eating lots of vegan potato pies etc I have been given by people or bought as they sustain my energy a bit better. Hoping I will find more energy over the next few weeks and be able to do a bit more. It's not been as bad as I thought so far. I can deal with the tiredness but the nausea wasn't nice even though it was mild. I try not to think how many more weeks and months ahead. 6 months seems unfathomable.

I have had more bad news as my smear test came back abnormal so more indepth tests to follow on that front. Really don't need this anywhere else in my body. At least they will be on top of it but psychologically and physically it just makes this all harder to deal with.

The next big thing I will have to deal with in about 10 days, is of course all my hair falling out...