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Metastatic Melanoma, targeted therapy and Immunotherapy and life moving on.
Dear blog/diary, I went to the Monday appointment and met the surgeon consultant who specialises in melanoma (and probably other stuff) to be honest it was unnerving. In my February blog which I’ve just read back I seemed to have my thoughts together of what I was scared of and why I felt I was feeling unnerved, in a 10 minute consultation it’s hard to get those feelings across so I had an unsatisfactory encounter. He seemed to be going through his set patter about 3 to 4 week wait for surgery, it would be morning surgery, and that my scar would or was that could be about 14cms long and the potential risks are lymphoedema and nerve damage, that I might have to stay overnight, I might need a drain, it won’t mean that the melanoma won’t come back, you don’t have to make a decision today. The nurse follows up with do want to do pre op assessment today or come back for an appointment another day. Give him his due he did give me an opportunity for questions but, (here’s where I get embarrassed) I had written them down in a notebook and not brought it with me but really I wanted reassurance that this was the best way forward in my case, and had all three consultants at the MDT agreed this was the best thing to do. But I didn’t ask that I leapt in with have you done this surgery with people on Pembrolizumab before. I would have liked the answer to have been an honest yes or no, followed by a bit of reassurance but the answer was I have done lymph node surgery in many places all over the body, with a detectable sub text of I’m a very important Mr not a dr and who are you to question my competence. Of course he might not have been aware of what I perceived as a sub text but it had the effect of immediately clamming me up as it was followed by the but you don’t have to make a decision today. Actually I did ask would the surgery fit around my Pembro treatment or would my surgery be done ASAP and my treatment fit around surgery. The answer was the later which I should have followed up with why what’s best for me, I just need to feel reassured and part of the decision making process. Oh he also mentioned that my node was wanted as part of a research trial into resistance, I asked when written consent was needed he said paperwork was done on the day. My thought was last time I considered a trial you needed paperwork first so you had time to think.
I agreed to go on with the pre assessment stuff but had a bit of a melt down with the pre assessment nurse. She unnerved me to as my surgery details were not yet on the system and she was asking if I was having a sentinel lymph node biopsy or a full dissection, and of course it was neither of the usual things, and it made me aware that I wasn’t sure if the surgeon was going to take out just the one node or do more and would that be based on what he found or on how he felt at the time, as he didn’t know what I felt. Pre assessment nurse got me back on track doing what was required for today, and telling me that the Specialist skin cancer nurses (SCNC) were the best people to talk to but all three were not available today, but one could ring me tomorrow. So I was then weighed, height measured, blood pressure taken, (swabs for mri and bloods not done as I’d had those done recently) and off for an ecg.
After the pre assessment stuff hubby and I headed to the nearest National Trust place for lunch and a walk to clear our heads, just get all the angst out to be able to think logically again. I just felt why am I putting myself through surgery, convince me again, and if I have to do it a 3 to 4 week wait seems long while they know already my node is cancerous and my treatment is no longer having any affect on it. I had a sleep on it and a chat with hubby not sure it was in the early hours or not or the next morning but he has private medical insurance through work for both of us and could an private op be quicker, google consultant we had seen, he does private work at private hospital I have been to when I drove a friend there for an eye op.
SCNC hadn’t rung by 10:30 so I thought I’d make the call. She was just the person I needed she hadn’t spoken to me before but she was aware of my case, she had been at the MDTs and heard the discussion re next steps both oncology consultants and surgeon felt surgery the best way forward, to keep change of drug treatment and possible side effects as a later option, I was able to express all my concerns about best way forward for me, concern over loss of mobility for quality of life stress factor and weight, able to talk through nhs waiting time and feeling awkward about is it possible to jointly pursue going private for speed rather than any service aspect. Nurse said letter for op date usually takes a week, if surgeon said morning op he might already have a potential date in mind, she would get hold of his private secretary details for me and speak to surgeon about what he intends to do in the op, she felt it would be a mini dissection, not all the nodes out no sentinel node tracer stuff required. Don’t worry about being on nhs list and then going private lists get changed all the time. Next phone call to AXA surgeon on their private list would need a procedural code for the op, gave me name and number for secretary. Rang secretary, had I spoken to surgeon re going private, no I hadn’t she would speak with him to see if my procedure was suitable to be quicker privately.
Next day nearly lunch time no calls back from SCNC or private nurse. Private nurse hadn’t spoken to him yet but he was due in later. SCNC not available but I could leave a message, message was big thank you I now have private secretary name and number. Decided to email to give thank you, and to point out still needed to be on nhs waiting list as hadn’t confirmed private would be quicker yet. Phone call from SCNC she had spoken to surgeon, private op not suitable as node wanted for research purposes, but he had managed to get hold of a surgeon who could do procedure laparoscopically, being better for mobility, and had me programmed in for a weeks time. Smiles all round, Googled other surgeon gynaecological and laparoscopy specialist a Macmillan surgeon, although not sure what that later bit meant. Letter arrived soon after confirming surgery date and other info, trials people phoned talked through and posted out their info, laparoscopy surgeon phoned the evening before surgery and very friendly talked me through what the procedure involved usual warnings re nerve damage, and that the other surgeon would take over if laparoscopy wasn’t in the end suitable. I already knew had to be there at 7 am and that op wasn’t going to be til 12, and that trial people would see me at 8am for their paperwork.
Next day 5am wake up no food after midnight allowed so no breakfast and as only water after 5am had a drink due to knowing this helps cannula go in. Left home 5:50 for check in between 6:30 and 7am as required. Had op discussion with first surgeon before 7:30, saw research nurse to do paperwork re use of node etc at 8:10, saw second surgeon later who needed the same paperwork signing as 1st surgeon, that I agreed to op and been made aware of risks. I was allowed to drink water 7ntil 10am. Then as I was sitting at a Pokemon stop I amused myself collecting Pokemon stuff and sorting through the creatures until called through about 11am for final blood pressure check questions and issue of grown and socks. I was wheeled up to the operating room waiting area, had a lovely chatty person pushing me, lots of green gowned people said hello and apologised for wait as laparoscopy surgeon not there yet. In my mind I remember telling him I was scheduled for 12 and he said it will be about 1pm. Nerves got the better in the 30 minute wait, surgeon was 10 mins away 30 mins before, I asked for a loo break which was ok as the surgeon would need to gown up on arrival, we passed him in the hall so I felt guilty about delay. When I got back surgeon gave final chance for questions, and said if I’m kept in he’d see me tomorrow. 4 attempts at putting the cannula in then no recollection until someone tried to wake me up. They said I had to open my eyes and stay awake as I had already been asleep for 2 hours, on trying to wake I felt like I had a migraine, headache and light sensitive, I muttered can’t keep eyes open lights are too bright. Had a nonsensical reply they had to see can’t turn them down, that I needed to stay awake. Well obviously that didn’t work as the next thing I remember is hearing my husband’s voice (he recons that was 6pm when I came up to the ward) he really has the most soothing loving voice, (we’ve been married 37 years) no idea what he’s saying I think he’s talking to who ever brought me up. Then at 8pm I hear him telling me he has to leave as visiting is over. I haven’t really woken up but I have been given an eye mask to wear and embarrassingly I have wet myself and needed changing (that’s not like me at all) and I’ve got oxygen tubes up my nose.
I have 4 sets of stitches belly button and three across the pant line and the next day could go home. I am type 2 diabetic (diagnosed at the same time as cancer) but for the last year I am diet controlled only and I felt very weak when the rounds were done as I hadn’t yet has breakfast, nothing to eat since the night before surgery. Breakfast finally came and lunch before I was let out, glad I had lunch though. I walked to the lift, and took the bus to the car park instead of the 10 minute walk and flopped and went to bed at 8pm. Surgeon phoned at 8:30 and spoke to my hubby. I had no problem with the stitches area but my shoulder hurt. Surgeon said it was common in women to have a displaced pain in the shoulder. It is due to the gas they pump in and out with laparoscopy some gets trapped but will only last a few days (it’s fine now). If I’d been awake I would have asked about after care as I wasn’t ready to ask that before. Interestingly he said he got the node out whole (I am wondering if it had grown any bigger) and it was all sticky, he imagines that the Pembro drug had been working to get it surrounded to isolate it, he had a look around and others seemed fine so just the one was taken that oncology wanted. All this sounds good and positive and I felt I was getting private standard treatment on the nhs maybe as I was giving my node.
I clarified with AXA be gentle on myself with walking as there’s stuff inside to heal that I can’t see. I week after my op I’ve had a follow up appointment with a nurse, stitches are dissolvable and as they were covered in glue I don’t have to keep them dry and showering will dissolve them quicker. Note to other people ask questions before you are discharged. I am walking about 2000 to 3000 steps a day slowly, but at the follow up one set of stitches was described as looking angry so I have been given antibiotic cream to use. In my groin I have an odd sensation above where I image the node had gone, not near the stitches it’s not a pain it’s an uncomfortable feeling, when I shower the weight of the water even causes it to be comfortable, I have an one meeting next week where I will raise this again. Nurse said it could be fluid but it’s not enough to drain. I have an nhs girdle to help not pull the stitches as I have a roll of tummy fat/skin,(I wish I was my 22 year old slim self) I have now bought some old lady support pants it helps with walking. I’ve been advised no jogging, or walking netball until perhaps June, I’m not sure about that time scale, and no driving til I can do an emergency stop perhaps a month, so perhaps a few weeks to go.
And that’s me upto date now, one Pembro appointment was cancelled due to surgery recovery and the next one is to go ahead in its usual 3 weekly sequence next week. I suspect next scan will show me as clear, and the gap in treatment will not have been a problem, and my node I can imagine is sitting in some storage facility and might already have had a few slices taken off it to have a look at it. At least if I do experience any problems from surgery at least my node will be of use. My next scan is due in April.
Oh nearly forgot as I didn’t go private I’m getting a cheque as a cash benefit of the policy, and I’m also going to receive a back dated payment as we didn’t realise that treatment by iv also has a cash benefit on the policy. I will no longer feel I shouldn’t have lunch out when I go for treatment as that money will cover that and petrol for us both, and a bit left for the charity box.
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