Bit of an update this one, brace yourselves. Last week I saw someone from my surgeon's team at the Royal London Hospital for my post-op pathology results (my surgeon was on holiday so I saw someone new). I received great news, they didn't find anything dodgy in any of the organs, glands and other stuff they removed during my major surgery on 2 April. So the tubo-ovarian cancer that they found was limited to just a 1.7mm sized tumour in only one of my fallopian tubes, which they had already removed at the end of February. This is good news on a number of levels. It means they got it all, so there's none left to remove or nuke, but the surgery was not in vain either. As I carry the BRCA1 mutation, this increases the likelihood of it coming back. But now they've removed pretty much everything it could possibly come back in, so I'm giving myself the best possible chance of remaining cancer-free after all of this and getting on with my life. The surgeon said that in their MDM (Multi-Disciplinary Meeting) they had argued about whether or not I even needed to have chemotherapy! Medicine is not an exact science, they just have to go on studies of people with similar cancer situations to mine; their own experience; and a bit of instinct. And as they were completely divided as a group, patient opinion also forms a part of it. Tanai and I have been reading studies about ovarian cancer, and in instances where the cancer was contained as mine was, patients who have the complete surgery I had, followed by a course of chemotherapy, have the best outcomes. For me it's a no-brainer -- if I didn't have chemo and it came back in the future, I would never forgive myself for not giving myself the best possible chance. So we opted 'yes' for chemo.
So yesterday we went to the general oncology department at Bart's for my first appointment there. The team leader is a woman called Dr M_____ who was lovely and clearly was one of the people in the MDM who voted 'for' chemo, so she was pleased with my decision. However, the other good news is that they are not going to give me two different drugs as they originally planned, they are only going to give me one drug, called Carboplatin, and hair loss is not one of the common side effects of this! I'm so pleased I will get to keep my hair this time. And I should tolerate it pretty well as it's not as harsh as the chemo drugs I had for breast cancer, so I should find it less horrid. This has made me feel so much better about the next few months, knowing that I have every hope of tolerating the drug and recovering afterwards. So my first chemo is on 16 May, then they will be every 3 weeks for 6 rounds, with my final infusion on 29 August, all being well. The routine will be that I get my bloods done the week before, see the oncologist on the Wednesday and if all is well I'll have my chemo on the Thursday each time. I got my bloods done this morning for the first round so I'm all set to go.
Interestingly, the oncologist I saw yesterday was Dr H____, and he was actually the registrar who agreed to refer me for the BRCA gene test in the first place, after my oncology team had refused me 3 times! He must have been stepping in for someone or something, as I have not seen him since then. It was great to see him again and get the chance to thank him. He was a bit taken aback when I said 'Ah we've met before! I have to thank you, I think you saved my life!'. Bless him, he's quite young and I think the only reason he referred me was because he was intimidated by me! But it has had a good outcome, and my words may perhaps alter his decision-making in future, which could help save someone else's life, who knows. I do think it's important to give feedback to my medical team where I can. Like the surgeon said, medicine is not an exact science, so if they can have the benefit of real life experience, it can help them in their decision-making.
So, other clinic appointments I have had over the last few weeks. I went to the lymphodema clinic again for a follow-up. I was looking forward to this visit, as I was only being treated for my right arm last time (due to 2 lymph nodes being removed from my right armpit during my breast surgery), but now that I've had all my pelvic lymph nodes removed, and my para-aortic lymph nodes, I wanted to ask questions about what other lymphodema risks I have, and what preventative measures I could take to minimise the risk of problems. Unfortunately the regular nurse had left, and the guy covering her position had no idea about anything! What a wasted visit. They have booked me for another appointment in 3 months' time, and ordered me some compression stockings in the meantime, but I was pretty irritated by this!
I also saw a member of the Cancer Psychology team, for an appointment which had been scheduled to discuss my upcoming preventative mastectomy. Rather bizarrely, if you wish to have a mastectomy without reconstruction, they insist that you get 'signed off' by a psychologist first (there is no equivalent process for women who wish to have reconstructive surgery). However, upon learning about my 'developments' we ended up talking about all sorts, and we have agreed to a couple more sessions before she'll sign me off for the mastectomy surgery. It was a good chat, and she gave me some more useful analogies to think about. One was about allowing myself to feel emotional. I mentioned that I am definitely feeling more emotional this time round (I have 'leaky eyes'!), and that I'm actually okay with this, as I'm finding crying to be a welcome release (I definitely don't think I cried enough the first time round!). She said to imagine I was in a swimming pool and the 'negative' emotions were like an inflatable ball I was trying to hold under the water. If you try to keep the ball under the water, you find that you're using all your energy to keep it there, and you have no time or energy to do other things, such as enjoy being in the water! Whereas if you simply let the ball float, and push it away from time to time, you'll be able to splash about and enjoy yourself, and when the ball comes back again you can just push it away and get on with having fun. I really liked this visual metaphor, and I think that's how I feel about my emotions this time around.
I've also been seeing the nurse at my GP every other day, and she's been re-packing and re-dressing the small wound at the bottom end of my scar. She's very pleased with how this is progressing, she says it's getting smaller and looking very clean, so that's good.
Generally in myself I'm feeling stronger and like I have more energy. I can just about put my own shoes and socks on now, which is useful! And I am starting to do little walks on my own and some gentle exercise. I'm sleeping well and feeling less pain. I even got out to the theatre last night, which was a huge achievement! We went to watch the London Marathon near Blackfriar's Bridge last weekend, as it's just a short walk from our flat, and I stood there for over an hour watching the runners. I felt very emotional seeing everyone running for cancer charities that have helped me, and I'm inspired to do something similar once I am well again, to raise some money for Bart's Hospital, which has saved my life twice! We shall see what I come up with.
Thanks for persevering with this long update. Feeling good, on the right track, let the chemo begin!
Showing posts with label Royal London. Show all posts
Showing posts with label Royal London. Show all posts
Thursday, 2 May 2019
Thursday, 4 April 2019
Recovering from surgery
I drafted a
post last week about how I was recovering from my oophorectomy, but didn’t get
chance to publish it before I headed back in for my second surgery. The two
experiences are markedly different. I guess all of that is irrelevant now, as this more major surgery has taken over. I thought I'd give a summary so you know how I'm getting on. I won't sugar-coat it, it's tough. This is the most major operation I've ever had in my life, and I've got to admit I'm struggling. But each day I'm getting a little stronger, so I just need to be patient and take it day by day.
In Recovery
Jugular cannula!
The surgery went well, the surgeon had a look around and didn't seem to find anything untoward, and I only lost 220ml of blood, so didn't need to have a transfusion, or go onto the High Dependency Unit, which is good! I was in the recovery bay until 2.30am on Wednesday morning though, as my blood pressure was really low, and they wanted it to come up before I went on the ward. I've been on the ward since then. So they removed my uterus, cervix, all my abdominal and chest lymph nodes and my omentum, which is part of the peritineum, and to do this they had to open me up from just below my breasts to my lower abdomen. I'm going to have an epic scar! It took them almost 6 hours. I also woke up with way more tubes than I was expecting.
- They put a cannula in the jugular vein in my neck, and then stitched it to me! This was an emergency line in during the op which I don't think they used in the end. When they removed the tube from it, it was about 6 inches long. Eurgh.
- They also put a cannula in an artery in my left hand.
- They also put a cannula in a regular vein in my left hand, which is still being used to give me pain relief
- They also put a cannula in a regular vein in my neck, which is still being used for pain relief and anti-nausea. They used my neck because I can't have sharps in my right arm due to having lymph nodes removed a couple of years ago during my breast cancer op
- They also gave me an epidural in my back, for pain relief during the surgery and for the first couple of days afterwards. I assumed I would never have an epidural because I thought they were just for childbirth! It was pretty cool, and when they removed it yesterday the nurse showed me the blue hooked tip which is used to deliver the anaesthetic
- They also had a feeding tube hooked into me via my nose all the way into my stomach
- They also had an oxygen tube hooked into my nose and round my ears, delivering me pure oxygen
- I also had a catheter as I couldn't walk so needed to be able to pee
Now, two days later, I just have the two regular cannulas and my oxygen tube, so there are slightly fewer wires to worry about!
I'm in a room for 4 people, and unfortunately the woman in the bed opposite me is the world's loudest snorer! She's been at it like a generator and seems to have an incredible capacity to fall asleep at all hours. I have earplugs and I can still hear her grating snore through them, it's so loud! Also, they have to do observations on me hourly, checking my blood pressure and temperature, so I'm not getting much rest. My pain relief has been switched to a PCA, which is controlled by me, so I press it every time I require pain relief. This is all very well, but it's forcing me to choose between sleep and pain relief! I'm still not allowed to have solid food, but I've graduated to soups and yoghurts, which means I can now also have ibuprofen in my mix of pain meds.
On the first day they insisted that I stood up and got out of the bed and into a chair. I felt very dizzy and only did it for a few minutes, but it felt like a great achievement. Last night I had a burst of energy and did it again, and managed to stand for about a minute. Today I've been able to walk to the bathroom twice, although very gingerly.
I'm significantly more incapacitated this time round, although I was lucky enough to have some friends bring me yummy food after the last op, so hopefully that will continue to happen after this one! Once again everything they removed will be sent off to the lab, and we will get the pathology reports in about a fortnight, and then we will crack on with the rest of treatment. I'm keen for it all to start, as the sooner it starts the sooner it will finish. I've also donated my tissue to a tissue bank -- so once the lab is done with it, instead of being incinerated, it will be sent to the tissue bank, for both local and international studies. Another opportunity to help medical science and improve cancer care for patients in the future!
I suppose that was a slightly pedestrian, descriptive post, but I felt the need to document it. I'm confident I shall get stronger every day and continue to fight back.
Saturday, 30 March 2019
Ding Dong: Round Two
So I have had some pretty shitty news. As you know, a few weeks ago I went into hospital for a preventative oophorectomy, to remove my ovaries and fallopian tubes in order to prevent me from getting ovarian cancer to which I am genetically pre-disposed. After removing them, they sent them off to the lab, and unfortunately ovarian cancer had already started to grow. So now I'm facing another few months of treatment to tackle this second cancer diagnosis, just as I was starting to feel strong again after beating breast cancer.
It will all start on Tuesday (yes, they're moving fast!) with some more surgery. This time it's a significantly more major procedure. They will open me up properly from navel to chest and remove a whole bunch of my insides: my uterus, cervix, all my lymph nodes and my omentum, which is part of the peritoneum, which is the layer of tissue which keeps all my organs in place (hopefully they won't move around too much after it's gone!). Also, while the surgeon is in there, he'll take a look around, and if he sees anything dodgy he'll take that too. The operation will take about 5 and a half hours, then I'll be in the HDU (High Dependency Unit) for a couple of days, and then on the ward for about a week before they'll let me go home. They'll send everything they remove to the lab again, and then we will know 100% what we're dealing with.
And then three weeks later I will have to start chemotherapy again. This time 6 rounds of chemo, every 3 weeks as before, which should take me up to September sometime. The drugs for ovarian cancer are different from the ones I had for breast cancer. I will be having carboplatin and paclitaxel. So the side effects may be slightly different, but the basics are the same (fatigue, hair loss, damage to nails and skin, compromised immune system etc).
Needless to say, I'm gutted, and Tanai and I have been quite upset these last few days. It just seems so frustrating that when I'm finally feeling strong and we are starting once more to talk about the future and get excited about things, that I get kicked down once again by cancer. But, in my usual approach to these things, I am determined to fight it and do my best to get through it once again. I'm seeing it as a bump in the road rather than a complete disaster. Plus, I'm going into it with my eyes open this time, having been through treatment once before. This will have its differences, but I know I can get through it. And I will actually use my learnings from last time to tackle it slightly differently this time.
I will try to exercise much more through chemo, if I can handle it with the fatigue. Last time I had chemo I put on 10 kilos (a stone and a half) and it's taken me a year and a half to almost get rid of it all! Now that I'm in medically-induced menopause and on Tamoxifen, combined with my residual cancer-related fatigue, it's much harder to lose weight, so I'm going to try to avoid putting too much on during treatment. I will do little lunchtime walks to Primrose Hill and gentle exercises at home, once I'm healed from surgery. I will also ensure I eat a healthy, nutrient-rich diet. I do this anyway, but I will be conscious of it much more, and won't be as indulgent as I was last time during chemo. Also my hair has just started to get to a length where it's feeling like a hair style again! So I'm going to attempt to keep my hair. I will only wash it once a week and tie it up with headbands, and hope that it only thins, rather than comes out completely. This may be a pipe dream but I shall try! At least I have kept all my headscarves from last time if it does end up coming out.
The good news is that a CT scan I had on Tuesday shows that it's unlikely to have spread. I have a high grade cancer, which means it's fast growing and aggressive (as was my breast cancer) but it feels as though I've caught it early and I have every chance of beating it. I will have to postpone my preventative mastectomy, and hopefully that won't cause me similar problems, but I'm still planning on having that done as soon as possible.
As with last time, my employer is being very supportive and, once I'm recovered from surgery, I'm planning to work throughout treatment. However, I'm due to run out of paid sick leave soon, so one of my biggest worries about all of this is about finances. So I've decided to put myself out for small freelance jobs -- proofreading, copywriting, baking, strategic planning -- basically anything I can put my mind to in my spare time. Hopefully I can ensure we can make ends meet.
The other change this time is that I will be more willing to ask for help. Tanai and I shouldered the majority of the burden ourselves last time, and we are both still exhausted from that. Tanai especially as I couldn't do as much. So this time we will be putting the word out and asking for help. I'll put a post up in a couple of weeks with more specific requests for support and for paid work for me, but in the meantime any offers of healthy home-cooked food are very welcome. I have not had time to fill my freezer with batch-cooked meals and I want to eat as healthily as possible. Tanai is a great cook and I know he can cook for us both, but it's a nice way to ease the burden and help us out financially at the same time.
Anyway, that's enough info for now. First things first: I need to get through Tuesday's surgery and recover from that. Then once I'm home I'll do a bit more logistical planning and will post again with more info.
It sucks, but I'm feeling hopeful and as strong as I can be in the circumstances. And so very glad that I pushed and pushed to have the BRCA test after my oncologist said 'no' three times, and then once I had a positive result, to immediately get the ball rolling to have my ovaries removed. I have given myself the best possible fighting chance. Now our NHS have to do the rest.
It will all start on Tuesday (yes, they're moving fast!) with some more surgery. This time it's a significantly more major procedure. They will open me up properly from navel to chest and remove a whole bunch of my insides: my uterus, cervix, all my lymph nodes and my omentum, which is part of the peritoneum, which is the layer of tissue which keeps all my organs in place (hopefully they won't move around too much after it's gone!). Also, while the surgeon is in there, he'll take a look around, and if he sees anything dodgy he'll take that too. The operation will take about 5 and a half hours, then I'll be in the HDU (High Dependency Unit) for a couple of days, and then on the ward for about a week before they'll let me go home. They'll send everything they remove to the lab again, and then we will know 100% what we're dealing with.
And then three weeks later I will have to start chemotherapy again. This time 6 rounds of chemo, every 3 weeks as before, which should take me up to September sometime. The drugs for ovarian cancer are different from the ones I had for breast cancer. I will be having carboplatin and paclitaxel. So the side effects may be slightly different, but the basics are the same (fatigue, hair loss, damage to nails and skin, compromised immune system etc).
Needless to say, I'm gutted, and Tanai and I have been quite upset these last few days. It just seems so frustrating that when I'm finally feeling strong and we are starting once more to talk about the future and get excited about things, that I get kicked down once again by cancer. But, in my usual approach to these things, I am determined to fight it and do my best to get through it once again. I'm seeing it as a bump in the road rather than a complete disaster. Plus, I'm going into it with my eyes open this time, having been through treatment once before. This will have its differences, but I know I can get through it. And I will actually use my learnings from last time to tackle it slightly differently this time.
I will try to exercise much more through chemo, if I can handle it with the fatigue. Last time I had chemo I put on 10 kilos (a stone and a half) and it's taken me a year and a half to almost get rid of it all! Now that I'm in medically-induced menopause and on Tamoxifen, combined with my residual cancer-related fatigue, it's much harder to lose weight, so I'm going to try to avoid putting too much on during treatment. I will do little lunchtime walks to Primrose Hill and gentle exercises at home, once I'm healed from surgery. I will also ensure I eat a healthy, nutrient-rich diet. I do this anyway, but I will be conscious of it much more, and won't be as indulgent as I was last time during chemo. Also my hair has just started to get to a length where it's feeling like a hair style again! So I'm going to attempt to keep my hair. I will only wash it once a week and tie it up with headbands, and hope that it only thins, rather than comes out completely. This may be a pipe dream but I shall try! At least I have kept all my headscarves from last time if it does end up coming out.
The good news is that a CT scan I had on Tuesday shows that it's unlikely to have spread. I have a high grade cancer, which means it's fast growing and aggressive (as was my breast cancer) but it feels as though I've caught it early and I have every chance of beating it. I will have to postpone my preventative mastectomy, and hopefully that won't cause me similar problems, but I'm still planning on having that done as soon as possible.
As with last time, my employer is being very supportive and, once I'm recovered from surgery, I'm planning to work throughout treatment. However, I'm due to run out of paid sick leave soon, so one of my biggest worries about all of this is about finances. So I've decided to put myself out for small freelance jobs -- proofreading, copywriting, baking, strategic planning -- basically anything I can put my mind to in my spare time. Hopefully I can ensure we can make ends meet.
The other change this time is that I will be more willing to ask for help. Tanai and I shouldered the majority of the burden ourselves last time, and we are both still exhausted from that. Tanai especially as I couldn't do as much. So this time we will be putting the word out and asking for help. I'll put a post up in a couple of weeks with more specific requests for support and for paid work for me, but in the meantime any offers of healthy home-cooked food are very welcome. I have not had time to fill my freezer with batch-cooked meals and I want to eat as healthily as possible. Tanai is a great cook and I know he can cook for us both, but it's a nice way to ease the burden and help us out financially at the same time.
Anyway, that's enough info for now. First things first: I need to get through Tuesday's surgery and recover from that. Then once I'm home I'll do a bit more logistical planning and will post again with more info.
It sucks, but I'm feeling hopeful and as strong as I can be in the circumstances. And so very glad that I pushed and pushed to have the BRCA test after my oncologist said 'no' three times, and then once I had a positive result, to immediately get the ball rolling to have my ovaries removed. I have given myself the best possible fighting chance. Now our NHS have to do the rest.
Wednesday, 27 February 2019
Ready for my oophorectomy
I'm sitting on the sofa with a hot chocolate and a shortbread biscuit: the last things I'll eat before fasting for my surgery tomorrow. I'm as ready as I'll ever be. Really hoping it all goes smoothly. I've had a lovely few weeks of birthday celebrations, as I turned 40 on Saturday, so it's really been a lovely build-up to the op!
Bye bye ovaries! Not to scale.
So as a reminder, I'm having my ovaries and fallopian tubes removed tomorrow. I had my pre-op assessments on Wednesday last week. I had to go to the Royal London Hospital in Whitechapel, where my surgery will be tomorrow, and have various tests. I had swabs taken of my mouth and nose (so they could test for MRSA), they checked my weight and height, and asked me loads of questions, including some really strange ones, like did I have any bruises. The nurse was really laid back, almost worryingly so. It's a bit strange being in a different hospital and realising that each has its own culture and feel about it, and the Royal London feels so different from St Bart's. I haven't met my actual surgeon yet, I'll do that tomorrow, but I was then sent to another room where another doctor asked me a whole load of questions (including lots that the nurse had asked me). I'm really not sure why I had to answer all these questions twice, but hey ho.
The nurse gave me 4 pre-op drinks -- basically carbohydrates and electrolytes. I've had 2 this evening and then I have to have the other 2 in the morning before I stop drinking water altogether. She also explained that after the operation I will have to inject myself every day for 28 days with something to prevent my blood from clotting. Urgh, not looking forward to that! I think I'll spare Tanai the pain of having to do it, and learn to do it myself. She said it was supposed to be Tinzaparin, an anti-coagulant which prevents DVT, but due to the impending Brexit there is a shortage across the NHS of this (and many other) drugs, so I have to have a substitute. Another reason to be angry about Brexit! I wonder how many people's health is jeopardised because of this.
I had to have 7 vials of blood taken (seven!) and the nurse was so useless. She tried twice to find a vein, and for some reason I got a really bad vibe about her. I just knew she wasn't going to find one, and I felt quite distressed. Over the course of my whole treatment, I have had countless needles stuck into my arms, by many many people, and I have started to see when people are good at it and when they're not. And she wasn't! (Also, she inserted the same needle twice which has never happened before, which gave me great misgivings.) Of course it's made harder now because I'm only allowed to have needles in my left arm, thus halving the number of veins they could attempt to use, and my veins are still rubbish from chemo, but I knew she wasn't very good at it. I asserted myself and asked her to give me my stickers and that I would go and get my bloods done at St Bart's. I did head into Bart's on Friday to get my final Zoladex injection and the lovely woman in the phlebotomy clinic found a vein first time and took the seven vials of blood in no time at all! So I'm really pleased that I didn't just sit there and let the nurse jab at me incessantly with a needle.
So this evening I've packed an overnight bag, removed my toenail varnish as instructed and I'm going to try to get as good a night of sleep as I can. Tanai will be coming with me to the hospital tomorrow and he's working from home for a week so he can look after me for the first week. I'm not allowed to lift anything for 6-8 weeks so any offers of visitors (especially those bearing home cooked food!) are welcome.
Today is also exactly 2 years to the day that I received the life-changing news that I had cancer. It feels like a lifetime ago. I can't quite believe how much has happened since then!
Sunday, 15 October 2017
Preparing for surgery
My surgery has been confirmed for Tuesday 24 October, so for the last couple of weeks I've been attending various appointments to prepare for the op. I saw my oncologist again on 2 October: my standard post-chemo check-up. She was really happy with my progress and I don't have to see her again until 4 December! It feels so strange, after seeing the oncology team every 3 weeks for the last 6 months, to have such a huge gap before seeing them next. As my treatment progresses my schedule of appointments will change, and once I'm done with radiotherapy I will drop down to seeing my oncologist and surgeon every 3 months, then every 6 months, and eventually I will only have to have annual check-ups. But I'm getting ahead of myself...
On 4 October I had my first Herceptin injection. Regular readers will know that this is a monoclonal antibody (I explained how they work here) which I have had intravenously during my last 4 rounds of chemo, along with Docetaxel and Pertuzumab. Its actual name is Trastuzumab but Herceptin is the brand name and widely used. Herceptin blocks the growth factor HER2 from helping the cancer cells to grow, and so the cancer cells eventually die. It has been shown to be hugely effective at preventing cancer from returning, so I have to continue receiving a dose of it every 3 weeks for a year in total. It took about an hour to receive it through an IV but now it's administered via a large needle in the thigh for a couple of minutes. Although this is much more convenient it bloody stings! My friend Jana came with me and distracted me and held my hand while the needle went in.
Next up was my pre-op assessment on 10 October, at my regular Breast Clinic in the West Wing of St Bart's. First they weighed and measured me again, so that they can calculate how much anaesthetic I need, then they took my blood pressure, took some blood for testing, and swabbed my nose, mouth and groin to check for staphyloccocus. I explained that I had actually had an outbreak of staphyloccocus aureous on my skin recently, but was on a course of antibiotics to get rid of it. It's highly infectious apparently, and can have major developments if not treated properly, so they have to control its spread in hospitals. Apparently if the tests come back positive, I will have to be last on the operating table that day, so they can scrub thoroughly after me.
Then I had to answer a whole heap of questions from a nurse, including whether I'd had general anaesthetic before, when I last had bronchitis, whether my ankles had swollen recently, and loads of other seemingly non-related questions. I had a general anaesthetic when I was a child for a multiple tooth extraction, I haven't had bronchitis since 2014 and yes, my ankles are swelling every day at the moment, in case you're interested. They are particularly concerned about some of the questions we're investigating to do with my heart, so they sent me off for another ECG and a doctor came to listen to my heart. Once again, the ECG seemed fine, but as I have an appointment with the cardio-oncologist next week, they're going to hold final judgement until then. Fingers crossed I'll be good to go for surgery on 24 October.
The nurse explained a little about what would happen which I will outline here for those of you interested. Firstly, the day before surgery, on Monday 23 October, I have to visit the nuclear medicine department for a Sentinel Node Scan. They'll inject some tracer near my breast and they track its progress in the lymph system by taking pictures over the course of 3 hours using a gamma camera. So basically I have to lie extremely still in a huge nuclear camera machine for the best part of half a day. Fun times. This will then guide the surgeon who will be removing my sentinel lymph node as well as the rest of my cancerous lump.
Then on the morning of 24 October I am not allowed to eat anything. Those of you who know how hangry I can get can appreciate that this is one of the things I'm most worried about. No food from midnight onwards and no water from 6am onwards. I'm going to get cranky! I also have to remove all nail varnish, and I'm not allowed to moisturise that morning or use an oil-based shower gel. I have to arrive at the hospital at 7am when I'll be greeted by the team and meet my anaesthetist. At this stage I don't know what time my surgery will be, as they decide on the day what order they will do everyone in.
So essentially the procedure is this. I am having two surgeries in one. Firstly, a Wire-Guided Wide Local Excision. This is the name of the procedure for removing the remainder of my cancerous lump. In the morning, they will use an ultrasound machine to guide a wire into my breast and they will leave the end of it right at the base of the remaining cancer. I will then have to go about with a wire hanging out of my boob until I head into surgery! This is to guide the surgeon, Miss L___, as she removes the cancer including a margin of healthy tissue so that we can be happy it's all gone. She will go down to the end of the wire and remove that along with the cancer. She will also take out the titanium clip which they put in there right back in February when they were doing my original biopsies.
And secondly, I'm having a Sentinel Lymph Node Biopsy. This is to check that the cancer has not spread into other parts of my body. The Lymph nodes are small, bean-shaped glands throughout the body. They are part of the lymph system, which carries fluid, nutrients and waste material between the body tissues and the bloodstream, and is an important part of the immune system. Cancer co-opts the lymph system in order to travel around the body and settle elsewhere, which is why it's possible to have Breast Cancer in your lungs, brain, and other organs. If my cancer has spread, it would do so via the lymph nodes in my armpit, so the surgeon is going to remove the first couple of glands and send them off to the lab, to see if they can find traces of cancer in there. The way they do this is quite funny. While I'm under anaesthetic, they inject my boob with blue dye, and then see where it goes. The first couple of nodes it appears in are the ones they will remove. They will take out 1-5 nodes (the average is 2.2). Apparently my breast can remain blue for up to 18 months after surgery! I think that Smurf Boob will be my new pirate name. Maybe I should audition for the next Avatar movie!
Once they're done, as long as there have been no complications, I can leave hospital the same day, and don't have to stay overnight. The lump and nodes will go off to a lab, and I will get the results 2 weeks later. If they have managed to take enough margin round the lump and my nodes are clear of cancer, I will not have to have any further surgery, and can go on to have radiotherapy a few weeks later. If the margins are not clear, or if there's cancer in the nodes, they will have to operate further.
I have been given an information sheet from Breast Cancer Care containing exercises I must do each day to ensure I get my full motion back in my right arm. There is a risk of Lymphodema, which is a permanent swelling of the arm due to there not being enough lymph nodes to fully drain from the arm and upper body. Also, I will not be able to have any blood pressure tests or blood taken from my right arm for the rest of my life! Let's hope my left arm can do all of that for me in future.
So now I'm feeling quite prepared for the surgery. I will take 2 weeks off work afterwards to recover, and hopefully will be fine to return after that.
And to further examine my heart, yesterday I had what's called a 'stress test' on my heart. This was quite a tricky test, I had to sit on a kind of exercise bike, but one where I was laying back at 45 degrees so they could put heart monitors around my chest and back. They set the 'bike' on a course which got increasingly difficult, and I had to keep pedalling in order to push my heart rate up. The tricky part was that they had to tilt the machine to the left in order to get the ultrasound wand and take photos of my heart. Riding a bike until your heart rate reaches 150, while tilted to the left so you feel as though you're going to fall off is quite challenging! But we made it in the end and they got all the pictures and videos they needed. I will see the cardio-oncologist on Tuesday for the results.
And my other hospital visit this week was on Wednesday, when I went back to the Royal London for the results of the biopsy on the skin tag I had removed a while ago. All good, I don't have skin cancer, hurrah! It was just a bundle of blood vessels so nothing to worry about.
One more week until surgery! It's a busy week at work but I'll be resting lots in the evenings and continuing to build strength and energy to help me see it through.
On 4 October I had my first Herceptin injection. Regular readers will know that this is a monoclonal antibody (I explained how they work here) which I have had intravenously during my last 4 rounds of chemo, along with Docetaxel and Pertuzumab. Its actual name is Trastuzumab but Herceptin is the brand name and widely used. Herceptin blocks the growth factor HER2 from helping the cancer cells to grow, and so the cancer cells eventually die. It has been shown to be hugely effective at preventing cancer from returning, so I have to continue receiving a dose of it every 3 weeks for a year in total. It took about an hour to receive it through an IV but now it's administered via a large needle in the thigh for a couple of minutes. Although this is much more convenient it bloody stings! My friend Jana came with me and distracted me and held my hand while the needle went in.
Next up was my pre-op assessment on 10 October, at my regular Breast Clinic in the West Wing of St Bart's. First they weighed and measured me again, so that they can calculate how much anaesthetic I need, then they took my blood pressure, took some blood for testing, and swabbed my nose, mouth and groin to check for staphyloccocus. I explained that I had actually had an outbreak of staphyloccocus aureous on my skin recently, but was on a course of antibiotics to get rid of it. It's highly infectious apparently, and can have major developments if not treated properly, so they have to control its spread in hospitals. Apparently if the tests come back positive, I will have to be last on the operating table that day, so they can scrub thoroughly after me.
Then I had to answer a whole heap of questions from a nurse, including whether I'd had general anaesthetic before, when I last had bronchitis, whether my ankles had swollen recently, and loads of other seemingly non-related questions. I had a general anaesthetic when I was a child for a multiple tooth extraction, I haven't had bronchitis since 2014 and yes, my ankles are swelling every day at the moment, in case you're interested. They are particularly concerned about some of the questions we're investigating to do with my heart, so they sent me off for another ECG and a doctor came to listen to my heart. Once again, the ECG seemed fine, but as I have an appointment with the cardio-oncologist next week, they're going to hold final judgement until then. Fingers crossed I'll be good to go for surgery on 24 October.
The patterns my heart makes
The nurse explained a little about what would happen which I will outline here for those of you interested. Firstly, the day before surgery, on Monday 23 October, I have to visit the nuclear medicine department for a Sentinel Node Scan. They'll inject some tracer near my breast and they track its progress in the lymph system by taking pictures over the course of 3 hours using a gamma camera. So basically I have to lie extremely still in a huge nuclear camera machine for the best part of half a day. Fun times. This will then guide the surgeon who will be removing my sentinel lymph node as well as the rest of my cancerous lump.
Then on the morning of 24 October I am not allowed to eat anything. Those of you who know how hangry I can get can appreciate that this is one of the things I'm most worried about. No food from midnight onwards and no water from 6am onwards. I'm going to get cranky! I also have to remove all nail varnish, and I'm not allowed to moisturise that morning or use an oil-based shower gel. I have to arrive at the hospital at 7am when I'll be greeted by the team and meet my anaesthetist. At this stage I don't know what time my surgery will be, as they decide on the day what order they will do everyone in.
So essentially the procedure is this. I am having two surgeries in one. Firstly, a Wire-Guided Wide Local Excision. This is the name of the procedure for removing the remainder of my cancerous lump. In the morning, they will use an ultrasound machine to guide a wire into my breast and they will leave the end of it right at the base of the remaining cancer. I will then have to go about with a wire hanging out of my boob until I head into surgery! This is to guide the surgeon, Miss L___, as she removes the cancer including a margin of healthy tissue so that we can be happy it's all gone. She will go down to the end of the wire and remove that along with the cancer. She will also take out the titanium clip which they put in there right back in February when they were doing my original biopsies.
And secondly, I'm having a Sentinel Lymph Node Biopsy. This is to check that the cancer has not spread into other parts of my body. The Lymph nodes are small, bean-shaped glands throughout the body. They are part of the lymph system, which carries fluid, nutrients and waste material between the body tissues and the bloodstream, and is an important part of the immune system. Cancer co-opts the lymph system in order to travel around the body and settle elsewhere, which is why it's possible to have Breast Cancer in your lungs, brain, and other organs. If my cancer has spread, it would do so via the lymph nodes in my armpit, so the surgeon is going to remove the first couple of glands and send them off to the lab, to see if they can find traces of cancer in there. The way they do this is quite funny. While I'm under anaesthetic, they inject my boob with blue dye, and then see where it goes. The first couple of nodes it appears in are the ones they will remove. They will take out 1-5 nodes (the average is 2.2). Apparently my breast can remain blue for up to 18 months after surgery! I think that Smurf Boob will be my new pirate name. Maybe I should audition for the next Avatar movie!
Once they're done, as long as there have been no complications, I can leave hospital the same day, and don't have to stay overnight. The lump and nodes will go off to a lab, and I will get the results 2 weeks later. If they have managed to take enough margin round the lump and my nodes are clear of cancer, I will not have to have any further surgery, and can go on to have radiotherapy a few weeks later. If the margins are not clear, or if there's cancer in the nodes, they will have to operate further.
I have been given an information sheet from Breast Cancer Care containing exercises I must do each day to ensure I get my full motion back in my right arm. There is a risk of Lymphodema, which is a permanent swelling of the arm due to there not being enough lymph nodes to fully drain from the arm and upper body. Also, I will not be able to have any blood pressure tests or blood taken from my right arm for the rest of my life! Let's hope my left arm can do all of that for me in future.
So now I'm feeling quite prepared for the surgery. I will take 2 weeks off work afterwards to recover, and hopefully will be fine to return after that.
And to further examine my heart, yesterday I had what's called a 'stress test' on my heart. This was quite a tricky test, I had to sit on a kind of exercise bike, but one where I was laying back at 45 degrees so they could put heart monitors around my chest and back. They set the 'bike' on a course which got increasingly difficult, and I had to keep pedalling in order to push my heart rate up. The tricky part was that they had to tilt the machine to the left in order to get the ultrasound wand and take photos of my heart. Riding a bike until your heart rate reaches 150, while tilted to the left so you feel as though you're going to fall off is quite challenging! But we made it in the end and they got all the pictures and videos they needed. I will see the cardio-oncologist on Tuesday for the results.
And my other hospital visit this week was on Wednesday, when I went back to the Royal London for the results of the biopsy on the skin tag I had removed a while ago. All good, I don't have skin cancer, hurrah! It was just a bundle of blood vessels so nothing to worry about.
One more week until surgery! It's a busy week at work but I'll be resting lots in the evenings and continuing to build strength and energy to help me see it through.
Wednesday, 6 September 2017
It never rains but it pours
Those of you who have known me for a while will know that I have a small reddish-purply skin tag on my left forearm, which has been there for about 6-8 years. It first appeared when I'd been living in Australia for a few years and has been sitting there on my forearm ever since. Early on I got it checked out by my local GP in Sydney and they advised that it was nothing to worry about, but that I might want to get it removed one day if it got irritating, as sometimes they can catch on clothing and they bleed profusely. Of course I never got round to getting it sorted out as there were always things higher up my list when I visited my GP (including a pesky lump in my right breast!).
Fast forward a few years and things are now critical. Over the last few weeks it has been growing steadily, from the size of a lentil to about the size of a kidney bean, and it has become more red and engorged. After my last chemo it started to bleed a lot and it's been impossible to deal with ever since. I have been covering it up with large plasters, to which of course I'm allergic, so now I also have a huge ugly-looking rash all over my forearm. Last week I went to see my GP about it, as the thought of keeping it under plasters until chemo is finished was making me feel upset, and I also wanted to check that there's nothing I should worry about. She took a photo of it on her phone and sent it to a dermatologist friend of hers who advised that I should get it looked at.
So this morning we found ourselves in the Dermatology unit at the Royal London Hospital in Whitechapel, a sister hospital of St Bart's, to finally get it seen to. (Yes, Nick, finally! You can stop nagging me about it.) We saw a lovely doctor who asked me a whole bunch of questions (How long did you live in Australia? Is there a history of skin cancer in your family? etc) and then took a look at everything. As soon as she saw it she immediately declared that she thought it was benign but that I should get it removed immediately and sent to the lab for testing. So that's what happened! After all these years it took a couple of minutes for a nurse to scrape and burn it off (after a healthy dose of local anaesthetic) and pop it in a tube to send to the lab. She was a lovely nurse and kept making jokes about how I was losing my best friend, that I'd been attached to for so many years. (Friend? Nemesis, more like!) So now I will have a small crater in my arm, kind of like a cigarette burn. Much preferable to what was there before. And I shall go back in 5 weeks for the results and to get a check up.
While the doctor was examining me she asked me about the obvious issues she could see on my mouth and my body. Basically I have sores all round my mouth and red spots all over my body. These have only appeared in the last couple of weeks, since my 7th round of chemo, and I just assumed they were because I was immunocompromised and that they would go away once I recovered from chemo. She agreed, but still said we could do something about them. She has taken swabs and sent those to the lab too, and given me some cream and tablets for them. She suspects mouth herpes (ah chemo, the gift that keeps on giving!) and some kind of bacteria forming the welts on my skin. It's all pretty gross, I know, but these are the realities of being immunocompromised: my body is susceptible to everything and I can't fight off any infection. So now I'm at home, very happy that the growth on my arm has been removed, once again delighted at how thorough the NHS are being about my health. I'm also hoping that I'm not in the business of collecting different types of cancer! We shall see on 11 October when I get the results.
I wanted to also add something to my last post. When I was having my heart echo test, the nurse left the sound on, so I could actually hear my own heart beating. It sounded different depending on where she placed the wand from the machine. I don't think I've ever heard my own heart beating before, so that was pretty cool!
Fast forward a few years and things are now critical. Over the last few weeks it has been growing steadily, from the size of a lentil to about the size of a kidney bean, and it has become more red and engorged. After my last chemo it started to bleed a lot and it's been impossible to deal with ever since. I have been covering it up with large plasters, to which of course I'm allergic, so now I also have a huge ugly-looking rash all over my forearm. Last week I went to see my GP about it, as the thought of keeping it under plasters until chemo is finished was making me feel upset, and I also wanted to check that there's nothing I should worry about. She took a photo of it on her phone and sent it to a dermatologist friend of hers who advised that I should get it looked at.
So this morning we found ourselves in the Dermatology unit at the Royal London Hospital in Whitechapel, a sister hospital of St Bart's, to finally get it seen to. (Yes, Nick, finally! You can stop nagging me about it.) We saw a lovely doctor who asked me a whole bunch of questions (How long did you live in Australia? Is there a history of skin cancer in your family? etc) and then took a look at everything. As soon as she saw it she immediately declared that she thought it was benign but that I should get it removed immediately and sent to the lab for testing. So that's what happened! After all these years it took a couple of minutes for a nurse to scrape and burn it off (after a healthy dose of local anaesthetic) and pop it in a tube to send to the lab. She was a lovely nurse and kept making jokes about how I was losing my best friend, that I'd been attached to for so many years. (Friend? Nemesis, more like!) So now I will have a small crater in my arm, kind of like a cigarette burn. Much preferable to what was there before. And I shall go back in 5 weeks for the results and to get a check up.
The Royal London Hospital
While the doctor was examining me she asked me about the obvious issues she could see on my mouth and my body. Basically I have sores all round my mouth and red spots all over my body. These have only appeared in the last couple of weeks, since my 7th round of chemo, and I just assumed they were because I was immunocompromised and that they would go away once I recovered from chemo. She agreed, but still said we could do something about them. She has taken swabs and sent those to the lab too, and given me some cream and tablets for them. She suspects mouth herpes (ah chemo, the gift that keeps on giving!) and some kind of bacteria forming the welts on my skin. It's all pretty gross, I know, but these are the realities of being immunocompromised: my body is susceptible to everything and I can't fight off any infection. So now I'm at home, very happy that the growth on my arm has been removed, once again delighted at how thorough the NHS are being about my health. I'm also hoping that I'm not in the business of collecting different types of cancer! We shall see on 11 October when I get the results.
I wanted to also add something to my last post. When I was having my heart echo test, the nurse left the sound on, so I could actually hear my own heart beating. It sounded different depending on where she placed the wand from the machine. I don't think I've ever heard my own heart beating before, so that was pretty cool!
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