Hello wonderful people in my life,
I hope this finds you well….after spending a few hours writing I lost the original novel I had written. I have no idea where it has vanished to so this I am starting from scratch……gah!
It has been a month since I last spoke to you all. I have to admit that it has been the busiest and hardest month so far in my cancer journey. However, through the tough times there have been a lot of good times too. Unfortunately there is a little bit of bad news which I have come to terms with. It’s not to much of a big deal now that I have had a couple of weeks to process it but just not what I needed when I am over halfway through my chemo where things start to get tougher.
Just over three weeks ago (Thursday 14th October, 2013) I had day surgery to get a portacath put in. A port is an amazing contraption that is inserted surgically into the chest and is used to administer intravenous medication and withdraw bloods. It can be described as a pincushion with a small plastic hose attached. The pin cushion sits roughly by my armpit and the tube (similar to a cathetor) runs through a large vein in my chest and stops just above my heart. I can feel and see the port as it sits just beneath my skin. When I go in for chemo there is a special needle that is inserted into the pin cushion / port and this is how the drugs are administered. Basically in non medical speak the port is used instead of a canulla which is a needle inserted into the veins of my hand. Most of the time the veins play hide and seek and with the amount of toxins that chemotherapy bring my arm (mostly my right) I have been suffering with a sore arm. It’s all internal and feels like the inside of my arm is bruised. It’s kind of weird to describe as nothing is quite like it. I have a couple of long dents on my arm from where the veins have “Thrombosed” which means the veins have frozen and will no longer function. Just as well it doesn’t matter and I have been told I don’t need them as there are plenty of others. It’s much nicer not having to have needles in my hands. So now I will have matching scars – one from the port surgery and one from the sentinal node biopsy. The difference between the two is one side is blue still stained from the dye and the other there is a plastic and metal contraption…..man I am cool.
While the day surgery went really well I was pretty optimistic that I would be sweet for work the next day. Ha! well I was totally wrong. The anesthetic absolutely smashed me I felt pretty dizzy and worn out. It took me about three days of rest to feel slightly normal again. That was pretty rough. Going back to school was not fun but I was right in a couple of days. Mum arrived in London the following Wednesday so that was good.
It’s been really great having Mum here visiting. I think she has been having a good time too. Wandering around and spotting the Queen and Prince Phillip. I get a text saying “Just saw Liz and Phil” I was like who is Liz and Phil? Then I clicked. I know plenty of people that have lived here their whole lives and not once seen the Queen! Lucky. Mum’s been on many walking adventures around the city. We have taken her to all the important places including Primark, Ikea and the International Food Court at Brick Lane. She has been to see Buckingham Palace, Piccadilly Circus, The Tower of London and St Paul’s. Next weekend I have brought her a tour of Windsor Castle, Stonehenge and Bath. I bet she will see the Queen again!
Chemo Number 5 was on Friday 18th October. I was slightly anxious about this round as the drugs were being changed and that I was going to have to use the port which was still healing after being put in only a week previously. I was meant to have taken steroid’s the day before which I had completely forgotten about so had to take them the night before. I think I was lucky I was able to sleep after being told I wouldn’t! The chemotherapy that I had had so far (EC – Epirubicin and Cyclophosfomide) was a softener to the new drug that I was about to get (Doxetaxel). At my appointment with the oncologist the day before chemo I had been told yet again that my bloods were completely normal and my heart scan (Echocardiogram) was also good so that was great news.
Using the port was pretty straight forward. A needle is just put into it and then it’s all go really. I just have to lay down to get it put in. You can’t feel the drugs going in like you can in your arm but at the beginning I did get a bit of a plastic taste in my mouth. I was so exhausted that I pretty much slept through this round.
While at Chemo I meet a lovely lady who was having her last treatment. Sandy was having her last dose of Herceptin the breast cancer drug that I have spoken about in my previous novels. After speaking a bit with Sandy we discovered that we had a lot in common. Both teachers, a year apart in our treatment for HER2+ breast cancer and both living within one street of each other. Small world. Sandy popped around the next day for a cuppa tea and gave me her wig that she barely wore during her cancer battle. So if you have seen photo’s of me going between blond, bald and brunette that’s where brunette has come from. Looking forward to more catch up’s with Sandy.
New side effects started to crack on over the weekend. No nausea or vomiting which was great but a whole raft of yuck. I was awake the Friday night till 2am that’s the steriod’s. Got heaps of filing done so that was productive. I was having a horrendous time getting hot flushes. Because your ovaries are effected so much and are trying to protect themselves against the Chemotherapy I get spontaneous sweats. It’s being described to me as if I am going through Menopause. It is horrible. It’s died off quite a bit now but I have no doubt it will be back again after the next round. Fluid retention is a big problem too. I go to the toliet ALL the time. It is the worst at night. I wake up in a hot sweat almost to the point of being soaking wet and I am busting to go to the loo. Once I pee though I am miraculously cooled down and I go straight back to sleep. Weird. Straight after Chemo this happens four times a night and slowly goes down to three by the next week and then two. I’m currently down to one. So after this Friday I’ll be back on the peeing all night band wagon……great! (enter sarcasm here). I slept with a cold flannel on my head the first weekend. That helped and drinking more water despite the fact it makes me pee more is also helpful.
The worst side effect has to be the one where you loose your taste buds because your mouth feels like it has been completely burnt and will not heal – like when you eat something really hot and it can last for up to 24 hours. Well imagine that for a week! Your tongue feels slightly swollen and it’s just shit. I didn’t really suffer to badly from body aches because I was so busy whinging about my mouth. I didn’t get ulcers this time which is good because they can actually be really painful. I carry adult Bonjela with me just in case. So no body aches really but my finger tips ached and my nails felt like they were really bruised. It’s funny when you feet or hands are no functioning normally and you feel some what disabled. I couldn’t even push pills out of their packets because my fingertips hurt so much. Other than that I have been a bit more tired. Probably due to having to get up so many times to pee and of course the steroids keep your eyes open.
Monday I was back to Chemo to have Herceptin for the first time. Doxetaxel and Herceptin have to be administered separately. As individual drugs they have been know to cause allergic reactions so it is best to have them separate and be monitored so the chemo nurses can observe what one you will react too. Herceptin was just as straight forward as any of the others. Saline drip, antihistamine drip – to combat any reactions, Herceptin. The antihistamine put my lights out big time. I was asleep again for the whole treatment. Nap time. I have to have Herceptin for the next year – once every three weeks.
To check the progress of the Chemotherapy I had asked to have an ultrasound. Since it was the halfway point it is generally common practice to see how the cancer is reacting to the treatment. The ultrasound showed two things. Something good and something bad. This is where the new dose of reality comes in. The good thing was the chemo was working. Lumpy was no longer round. He was all jagged and spikey. It can be described as a piece of cheese nibbled by a family of mice. The bad thing was that the radiologist had found another lump.
Lumpy number two also known as the twin or baby of the original Lumpy. I had a biopsy right then and there. So local anesthetic and more stabbing with the spear gun that sounds like a gun stapler and takes tissue samples from the lump. The radiologist graded the lumpy as benign. Which means that it should be nothing. There is no explanation for these lumps popping up. They just do. A week later I got the results. More cancer. A 4mm lump only about 1cm from the original Lumpy. Tiny but has massive implications.
After having a consultation with my surgeon Dr Tan who had spoken with my Oncologist Dr Crook the consensus is that I continue to have chemo just like I always was. They both feel that the Doxetaxel and Herceptin combination will shrink Lumpy number 2 completely. If it doesn’t then it will be removed in a lumectomy – both tumors the tissue between the two. This changes things a bit. I seriously need to consider my options. For the first time in this journey even though it has been a “you may have to consider this but not really option” I was told that a Mastectomy was now on the table.
It all depends on how well the next three rounds of Chemotherapy go. At the end of the Chemo just before Xmas I will probably have another ultrasound, a mammogram and a MRI to check how much the cancer has shrunk and that is where my surgical options will be laid out. Obviously the surgeons main aim is to give me the best looking breast as possible. I may not have to have a Mastectomy but I need to consider it as a possibility. If I did decide to have one they would basically remove all the tissue from my breast leaving a shell and take a wedge of skin and tissue from my lower stomach (basically giving me a tummy tuck by taking my muffin away) molding it and putting that into the shell of my breast. This tissue will grow and age naturally with my body where an implant wouldn’t so this is the more natural option. I guess if I get the whole thing cut out and have reconstruction at the same time then at least the cancer would be all gone (hopefully). I guess watch this space.
It was pretty hard to deal with that news it’s such a blow to my confidence that I have kept up the whole time. What is worse is that being over halfway into Chemo with a new raft of side effects to deal with, more tiredness and the onset of winter to top it all off. I was upset, pissed off and generally angry. You feel like you are doing so well then boom it’s a kick in the guts and you can’t do anything about it. But I have thought about it and weighed up my options and I have said to this little 4mm f***er well you can just shrink and f**k off because I am not going through all this s**t to have you pop out out of nowhere. End of. I have been online with the ladies of Shocking Pink (NZ Breast Cancer support group based in Christchurch) and have told them about Lumpy number two. Someone told me they had 4 extra lumps. Ridiculous. Again it puts into perspective that there are others out there who are worse off that I.
Back to the good news.
I have just had a week off work with Half Term Holiday. The first half of the week Mum, Katrina and myself made a trip to Italy. Conveniently away from the horrid weather that London and the rest of England had we were lucky enough to sunny days it was very warm. We flew into Pisa and stayed in Florence the whole time and had day trips for there.
We spent a day in Florence seeing the sights, did a walking tour and wandering the markets. We also ate our first lot of pasta and gelato in Florence and I managed to stop Mum from buying various over priced leather jackets from creepy Italian men. We did a day trip of the Chianti wine region of Tuscany and did some wine tasting, stopped in the town of Grieve at a fresh food and farmers market, wandered the high walled fortress streets of Castellina where vineyards sprawl out over the land as far as the eye can see. Siena was just gorgeous. The historic city is made up of rabbit warren streets that are entangled amongst buildings that are several stories high. The center of the city is a square which is home to a beautiful Duomo and many other hidden gems both medieval and modern. In Siena we ate more pasta, and tried some pizza and local red wine and had more gelato. Better gelato that Florence. On the way back to Florence from Siena we stopped at the small village of Montereggorioni which is housed inside medieval walls. Just stunning.
The next day we were off to Bologna. Through the countryside then up into the hills were all off the roads passed through a vast network of tunnels. Bolonga was quite a dirty city. I don’t think we spent enough time there to really appreciate it. We made our way into the city and climbed the cities highest medieval landmark. 495 stairs and we were at the top, roasting, sweating like no tomorrow and wig off! Views were pretty great. In Bologna we had more pasta – Fetticine and Ravioli and tried some Risotto. It took us ages to drive to the Ferrari Museum but that was pretty good fun.
Pisa was our last stop before flying back to London. More gelato was consumed and we had the token pictures taken holding up the Leaning Tower. The Leaning Tower for me was a lot smaller than I expected but very ornate and quite beautiful. Such a stunning area of the city.
By the time we got back to London it felt like the temperature had gone down a few more notches. It’s defiantly getting colder!
Another theatre night out to see Jersey Boys with the girls – Kate, Sarah, Ashleigh, Alice, Catherine, Kelly and Mum. Such amazing talent and we were front row centre. Cheap tickets the only down side I found was that we got a bit blinded by the lights. Defiantly a must see show.
Mum and I made a trip up to Norwich, Norfolk to visit friends of Mums – Jenny and Chris. It was so nice to spend some time in the country side. We went for a big drive and made it to Wells Beach and Yarmouth. Another part of England ticked off.
Just a quick shout out to those who have donated to my shine fundraising page THANK YOU SO MUCH for your support. I appreciate it so much as does Cancer Research UK. I am so close to 1000GBP so anyone who still wants to donate you still can….http://www.justgiving.com/wellerjess. Thanks also to Maya Van Muller who recently shaved her head and has been fundraising in New Zealand for Starship along with a group of collegues at Waitakere College in Auckland. You look great with a fuzzy wuzzy! Love you heaps.
So…..that’s it for another novel update. It’s back to school tomorrow so hopefully the boys are all well rested and not grumpy. Friday this week will bring Chemo number 6. Only three to go it what I have to keep reminding myself. I am so close to the end of this part of the cancer journey. Things I look forward to are spending more time with Mum, a day trip to Leeds Castle, the Cliffs of Dover and Canterbury, seeing Let it Be the Beatles Musical, doing an abandoned Underground station tour and I have Xmas in Portugal to look forward to with Dani, Kate and Sarah.
Life sure is interesting. I think everyday that I just need to take one step at a time and I don’t really sweat the small stuff anymore. I think you generally have to let go and just let things happen. I certainly don’t have much control over what is happening in my world at the moment so why bother fussing and worrying about it. What will be will be and all you can do is smile and do what you can to enjoy what you can and schedule in some rest time somewhere in between.
I hope this all finds you well until next time….