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!
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