Pathology Results!

So today I met with my surgeon and received my results!

During my gastrectomy, they removed 27 lymph nodes from my abdomen. I’m pleased to report that all of these were clear! (Surprised at how many were removed – I’m actually curious as to how big/small they are!)

In my stomach, they found 2 foci of adenocarcinoma measuring 4mm each.

The margins were great too, meaning no gastric mucosa was left behind where they made the join.

YAY!

🎉 🎉 🎉 🎉

I was so relieved! Now I know for certain that everything was removed during the surgery, putting my mind at ease.

 

I showed him my incision, to which he confirmed was a keloid scar. 😕 If anybody out there has any suggestions/home remedies for this type of scarring, please let me know! I have ordered some silicone scar sheets and gel in hope that this will help, as I can’t even wear a bra at the moment because of it! 🙈

Anyway, the next step thanks to this lovely CDH1 mutation is annual MRI screenings for lobular breast cancer. (People with the CDH1 mutation are at an increased risk of developing gastric cancer and lobular breast cancer) This is recommended from the age of 30, but my surgeon has referred me now to get the ball rolling much sooner. 😊

 

 

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One Month Update

Weight lost from the 26.09 – 26.10 = 7.7kg 

My new plumbing! Before and After

Gastrectomy-Before-and-After

Photo taken from: https://www.nostomachforcancer.org/

It’s been one month since my surgery and I’ve experienced a few hiccups along the way. I anticipated problems from my new “plumbing” but not the issues I’ve encountered…

  1. Problems with my incision
  2. Debilitating back pain

1. A few days after writing my last blog post, I ended up at the legevakt (E.R) and hospital for over 8 hours… I had been experiencing some stinging pain from my incision and couldn’t physically see what was going on since it was still covered with a steri-strip that I was told not to remove. Since it was a Sunday, we called the legevakt, and they told us to come in.

When I had my surgery, they gave me intradermal stitches and no staples – so I did not need to have anything removed. 

After a long wait, I was seen by a Doctor that examined the area. He could see that there was an opening in two different areas (at the top and above my belly button). After cleaning up the area, he called the hospital and spoke to one of the Surgeons. He wanted to see the incision, so off I went, freshly bandaged up to the hospital.

He thoroughly checked the openings and explained that they were superficial, so only the top layers were open. He explained that this was normal and often seen in young, active patients. He scrubbed the areas to make them bleed more before closing the areas with steri-strips, and was told to continue doing this over the next week if I saw any blood or leakage on the bandage. But since I’m a wimp when it comes to pain and blood, Nurse B watched the Surgeon so that he could be responsible for this task!

After being checked over by my Doctor a week later, the two areas were still slightly open but said that it was looking good and prescribed me some antibiotic cream to apply a few times a day. Luckily, this did the trick and healed the two problem areas nicely! 🙂 Hurray! I was so relieved! I was initially told that if it didn’t close up on it’s own, they would have to stitch up the two areas, which would mean cutting deeper and into the scar tissue. Ouch!

 

 

2. My other gripe has been back pain. I knew I would have some pain after surgery since I have degenerative discs in my lower spine, but this has been a nightmare. My back was bad to begin with, most likely caused by a combination of things; the epidural, lack of mobility and my back muscles overcompensating for my core. In the first few weeks, I would wake up multiple times in the middle of night with agonising pain and tense, solid back muscles. Then, after not being able to shave for a few weeks, I stupidly decided to shave my legs in the shower… What a huge mistake that was. After standing in multiple flamingo-like bent-legged poses, I had well and truly screwed up my back. Now, I can barely sit down (if I do, I can’t walk properly afterwards and I get pain radiating down my left leg) – so I’ve been spending most of my time propped up in bed or laying down.

I’m just hoping that I’m able to go and see my chiropractor soon as the problem is not resolving on it’s own.

Food-wise I’ve been trying all sorts of things! Pasta with tuna mayo, cheese on toast, jacket potato with homemade chilli, pizza… The list is endless! When my mum came to visit, we even went out for pizza on her last night, and I managed to eat half of a kids pizza! (It took me about an hour to do so, but that’s fine!)

My first outing since my surgery!

Up until the weekend, I had a great appetite and would crave almost anything. But now, even typing the above makes me nauseous. I’m not really sure what’s changed and I’m struggling to overcome it at the moment as the nausea makes it difficult for me to eat or want to eat. I’ve found that chewing peppermint gum relieves the nausea, but only temporarily. I’m just hoping I can overcome this hurdle and find some solutions to this so that I can get my appetite back. 

 

Kissing my Stomach Goodbye

On the 26th September, I kissed goodbye to my stomach. Why? Well, to cut a long story short, I inherited a mutation in the CDH1 gene – which means I have an increased chance of developing diffuse gastric cancer and lobular breast cancer. After a routine gastroscopy in April revealed one of the biopsies to show cancer, I made the decision to have a total gastrectomy. Below are extracts from my diary that I wrote during my stay in hospital.

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Stomach Plush – Bought from Plusheez

 

26.09.17 Day of Surgery – Tuesday

Today is the day. Something I’ve been building towards for the past 4 months, ever since I got that phone call on the 18th May. Currently sitting in hospital in pjs and a dressing gown, trying to keep as cosy and warm as possible. B is sitting here beside me, usually sleeping as he’s shattered. We were here 8.5 hours yesterday for my pre-op so we were both exhausted! Luckily they gave me a sleeping pill to knock me out last night. Starting to get a bit nervous now. Just trying not to think about it all as I keep visualising myself in the operating room and it freaks me out a bit. It’s a long road ahead, but I have to do this. The alternative would or could be much worse…

27.09.17 Day 1 – Wednesday

dav

So yesterday went well. The level of care here has been fantastic so far. The surgery took longer than the expected 3-4 hours. I was under anaesthesia for 9 hours! This is because they sent some tissue to pathology for testing to see if there was any gastric mucosa left behind where they made the join of the oesophagus to the small intestine. It turned out that there was, so they cut more tissue away and made a new join. When the surgeons told me this today, I thanked them massively as having stomach mucosa left behind had been my biggest worry. They allowed B to come and see me in the recovery ward at around 10pm last night. They said I would be incoherent and wouldn’t remember anything, but I was fine! Even the nurses were shocked! When they awoke me from surgery, I even asked them what time it was and was surprised at realising that I had been asleep for 9 hours!

Today I am allowed to drink 300ml of water, but it’s a struggle. When I take a sip, it feels like it gets trapped in my throat and chest, so I sucked on ice cubes instead. Unfortunately, that’s now causing the same issue. I managed to get up onto my feet with the help of the nurses, so that’s something at least! Baby steps – one day at a time. I will try again tomorrow. Apparently I look well and have no fever, so that’s a good start.

28.09.17 Day 2 – Thursday

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So today, the physiotherapist got me up and walking down the corridor and back! My main struggle is the air that’s trapped in my body. A lot of it is in my chest and some further down. The pain is horrific! Turns out it’s from the CO2 that was pumped into me during surgery. They said most of it will be absorbed by the body and muscles over the next few days. B came to visit again today, it’s really great having him here. I haven’t done much at all today apart from rest but surprisingly, it hasn’t been boring. I just need to remember that my body needs time for everything to heal, so rest is very important. I also managed to drink half a glass of saft! Small victories!

 

29.09.17 Day 3 – Friday

Last night wasn’t so good. I think I called for the nurse 3 times because of the pain caused by the trapped CO2. Today was okay, I walked three times with the IV stand (no longer need the zimmer frame thing!) and I can even walk without it whilst someone else pushes it along for me! The only downside is that it’s pushing around all the air inside me when I walk. I’ve cried twice today from the pain because it’s so bad and now it’s pushing against my incision where my stitches are. If I didn’t have to deal with this, I feel it would be plainer sailing! Gianni stopped by today with Bjørnar, and brought me a beautiful potted plant. It was nice having extra visitors. It was also nice being able to catch up with him, as I havn’t seen him for a couple of months. B has been wonderful though, attending to some nurse type things whilst I’m in here, what a saint.

30.09.17 Day 4 – Saturday

Last night also wasn’t good. I called for the nurse 4 times because of the pain caused by the air. Each time, they increased my epidural and I would fall asleep only to wake again an hour later in agony. On the fourth call, they gave me morphine and I slept for 3 hours until the nurses came in at 7am.

Today has been a struggle. My epidural was removed, as well as my catheter. The pain has been the same as last night. Over the course of the day, they managed to get the pain under control by giving me morphine. BK and Anne Marthe came to visit in the afternoon, which was lovely 🙂 They brought me a beautiful bouquet of purple flowers. Weirdly enough I felt a bit guilty because I was very drugged up and still in a lot of pain, so I wasn’t much fun to be around!

01.10.17 Day 5 – Sunday

Screen Shot 2017-10-06 at 17.15.27Today has been a much better day! The pain has been managed throughout the night, which meant I got a lot of sleep and some during the day too. I also drank 1.5 cups of tea, 1 cup of lemon water and a bit of saft. So I feel like I’ve managed to get a lot down today. It’s also been nice having more visitors as Linda came to spend the afternoon with me. She brought me a lovely pink lotus flower friendship bracelet, that she also has in blue. Very thoughtful ❤ B also came to visit later in the day and he’s just getting ready to leave. Later, I’ll give my mum a call and maybe try to read my book. It’s so difficult though as my eyes keep rolling around in the back of my head as I feel tired all of the time.

02.10.17 Day 6 – Monday

Today has been an interesting one. I was sent for a chest x-ray at 9pm last night. (I’ve been wheezing a little bit when I breathe in and out.) Turns out, I have a bit of fluid on my lungs. No infection though, so I have to be mindful to take deep breaths and be up and about more. B and his mum came to visit me in the afternoon. It was lovely having her here as I didn’t know she was going to be in town until I was in hospital. She brought me a beautiful bowl of flowers, which one of the nurses commented on saying how pretty it was.

Today I’ve started to eat a few things. I say eat, but it’s still liquids. First off, I tried a chicken stock cube in hot water (too salty as I used the whole cube in a small amount of water – silly me), then i had 3/4 of a high calorie berry protein shake and a bit of fiskesuppe. My appetite seems to have changed though. I absolutely loved fiskesuppe before, but once it was in front of me, the smell made me feel nauseous. I tried a couple of spoonfuls and couldn’t have any more. Today I’ve been walking up and down the stairwell! Managed to do it three times as they suggested. At the moment, I have a lot of strength as I’m given saline and glucose via IV. Tomorrow they’re planning on removing my drainage tube. That’s the source of a lot of my pain, so hopefully once that’s out, things will get a little easier.

03.10.17 Day 7 – Tuesday

edfToday they removed my drain! At first, the nurse removed the bandage, and then the stitches. She gave me morphine and suggested I walked around for 10 minutes to loosen the drain. I’m squeamish with needles and stuff like that, so it grossed me out to look down and see a tube sticking out of my abdomen! It was a bit painful as I was walking around and I started to get dizzy just before she came back into the room. It was painful when she pulled it out! I yelled out that loud, I’m sure the whole ward could hear me! I still have a lot of discomfort in the area, but it’s no surprise really as it was through my muscle.

It’s now 9:30pm and someone has been wheeled into my room 😦 Boo! I had it so good! I was initially sharing a room with somebody until Friday, so it was nice having a space to myself for a few days. Never mind, I should only be here for another few nights.

04.10.17 Day 8 – Wednesday

edfToday I’m going home! They said I could stay another night if I didn’t feel safe leaving today, but I feel ready. I still have some discomfort, but I’m coping well without morphine.

I’m still trying to eat as often as possible. I got a bit dizzy in the pharmacy earlier, and figured it was my blood sugar level. So I had a teeny bit of honey once I got home, which seemed to help. I even tried a mashed up poached egg in the evening! It’s nice to be home and trying different foods and being back with B ❤

 

 

I just want to say a huge thank you to the wonderful Nurses, Doctors and Surgeons at Haukeland that looked after me during my stay, thanks for the lovely messages of support and kind words from my family and friends, thanks to my wonderful visitors that came to see me in hospital, which made my time spent there much more pleasant… and the biggest thank you of all to Nurse B ❤

Not sure how I could have gone through this without him.

 

Basking in Baška Voda

Last month, Bjørnar and I went back to our favourite place; Croatia! Initially, we had discussed doing city breaks this year with Amsterdam in the Summer and Iceland in late October. But with everything that’s going on, we decided to have a nice relaxing beach holiday instead. So this year, we went to Baška Voda, located in the Makarska Riviera.

My motto this Summer was to “Eat, Drink and be Merry”, so we definitely came to the right place!

On the Monday, we booked an excursion to go wine tasting in the mountains. Before we got to the winery, we stopped off at two different locations – the blue lake and red lake.

These are both sinkholes. The blue lake looked green whilst we were there. The red lake is named after the reddish-brown colour of the surrounding cliffs, coloured by iron oxides.

Afterwards, we arrived in Imotski at the Grabovac vineyard. Having sampled many of their lovely wines last year, we knew we were in for a great evening. We left with two bottles of red wine – one of which is still unopened! (We’re saving it for a special occasion once I’m fully healed from surgery – fingers crossed I can still drink wine then!)

During our stay, we decided to walk to Brela. This was a beautiful town that seemed bigger than Baška Voda. There were so many beautiful beaches, but the one we headed to was the furthest away; Punta Rata (In July 2004, Forbes magazine listed this beach among the 10 most beautiful beaches in the world). I made sure to pack our swimming goggles that day, and I got to see lots of different fish around the rocks.

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On the Friday, we booked an excursion to Dubrovnik. The coach journey, although long, (4 hours each way) was wonderful as we got to see some beautiful scenery. An area of the coastline, a town called Neum, is actually part of Bosnia, so we had to pass through the border four times (into Bosnia – then back into Croatia as we reached Dubrovnik and vice-versa). We were told this could potentially take up to an hour both ways, but luckily we were allowed through without scrutiny each time.

Dubrovnik Old Town was beautiful! It actually reminded me of Venice with it’s stunning architecture, history and stone walls. I did however struggle that day with the heat and crowds. I was dehydrated and didn’t have enough energy to keep walking around. I felt like I didn’t get to thoroughly enjoy the day, and would like to go back there again but in Spring or Autumn – something that I also said about Venice.

It was a great week in Croatia, and we were glad that we had the opportunity to see a bit more of the country by also visiting Dubrovnik. Split Airport was of course the same as last year! But at least we already knew what to expect!

 

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The Croatian goodies we came home with ❤ 

1 Year update

One year ago today, (gosh that went quick) I opened a can of worms / was the day I embarked upon this journey / was the day I stepped onto this crazy rollercoaster ride…

Today I’m feeling positive – but realistic (hence me describing it as a crazy rollercoaster ride) On my down days, I tend to think that I’ve opened a can of worms! I’m only human!

Basically, I sent an email to the genetics department here in Bergen, asking for more information as to how I would go about having a test done to find out if I carried the CDH1 mutation that runs in my family.

After getting the relevant information from the Doctors in England, I took this information to my “fastlege” (Doctor) in Bergen the following week, and requested a referral to the genetics department.

01.08.16 – Contacted the genetics department

08.08.16 – Referral from my Doctor

04.10.16 – Appointment with a genetics counsellor – Blood test sample taken

08.11.16 – Results from blood test – CDH1 mutation detected

30.12.16 – Meeting with genetics counsellor to discuss next steps (opted for screening)

18.04.17 – First endoscopy with multiple biopsies taken from stomach

10.05.17 – Meeting with surgeon to discuss option of having a Total Gastrectomy in the next few years

18.05.17 – Results from biopsies – Signet ring cell carcinoma detected in one of the samples taken. Decision made to have TG this year

14.06.17 – Second meeting with the surgeon to discuss the TG

21.06.17 – PET/CT scan (awaiting results)

 

As it currently stands, I am still scheduled to have my TG on the 26th September. I haven’t received the results from my PET/CT scan so I can only hope that no news is good news…

 

 

 

June 21st – The Longest Day (in more ways than one)

June 21st: The Summer Solstice in the Northern Hemisphere and the longest day of the year

For me: My first PET/CT scan, which felt like the longest day of the year!

So, before I get the final go ahead for my surgery in September, my surgeon decided to refer me for a PET/CT scan to stage the cancer.

🤞 Fingers crossed that it’s just localised and I won’t need chemo 🤞

After fasting all morning and drinking copious amounts of water, I headed to the hospital for my appointment.

On arrival, Bjørnar and I sat and waited until my name was called. We were then shown to a room, I changed into some hospital clothing, laid down on the bed, answered a few medical questions and had my blood sugar level checked. Then I waited for the Doctor to come and put a cannula in my arm.

This was not a pleasant experience 😥 I have thin, deep veins that are difficult to find. Every time I have a blood test, a long time is spent trying to locate a vein. Usually, the Nurse/Doctor has a few attempts and I end up resembling a pin cushion. Today was no exception… They even used a special gadget to look for veins in my arm!

AV300-Vein-Viewing-System

Image taken from: http://techpp.com/2012/03/26/top-medical-gadgets/

After 5 attempts in the back of my hands (which resulted in a few painful, little bruises), an Anaesthesiologist was asked to come and find a vein. Luckily, his first attempt was successful! After he left, the Doctor returned with a large robot-looking machine, connected it to the cannula in my hand and in went the radioactive tracer. Bjørnar left the room at this point to get some food since I had to rest and relax for the first 30 minutes (apparently even reading can affect where the tracer ends up in the body). For the first few minutes, knowing that what had been injected into me was radioactive, my heart started pounding and I began to feel anxious. Since I couldn’t feel anything physically different in my body, this helped me to slowly calm down.

After 75 minutes or so, a Nurse came to tell me that they were ready to do the scan and I followed her to the room. After laying down on the scanner bed, I was told that they would be injecting me with the contrast dye for the CT part of the scan. They explained that I would feel some discomfort in the area where it was injected, and since the cannula was in my hand (usually they put it in the forearm) they would reduce the pressure. After placing my hands above my head, I was moved through the machine.

Immediately, I got very anxious and felt claustrophobic! With my heart pounding in my chest, I asked them to take me back out. A few moments later, I said I would try again and tried to keep it together. Once I was through to the other side of the machine, they injected the contrast dye into the cannula. Now this hurt A LOT! My hand was burning and it was very painful. They tried to relieve the pressure, which helped a little, but then my heart began to pound in my chest and I felt like I couldn’t breathe! I told them it felt like somebody was sitting on my chest. They asked me if it was anxiety and I said that it was nothing like what I had felt before. I tried to focus on my breathing – taking deep breaths in through my nose and slowly out through my mouth. After a while, the pain subsided and the pounding started to lessen.

I’m not sure how long the scan took, but I can assure you, it felt like a lifetime… I had an MRI scan around 8 years ago, and laying in a claustrophobic tube is no fun. Especially when you have to be in there a while! Back then, I managed to control my nerves, so I definitely feel that my anxiety has worsened since then.

From this experience, I have realised that my anxiety is worse than I thought. I feel like I wasted four months being on anti-depressants as this only helped the situation temporarily. Without the medication, the issue is still there and I need to get my mental state into better shape before my surgery in order to aid my recovery.

I just want to end by saying that I really do have the best fiancé ❤ Bjørnar has been so supportive throughout all of this. Yesterday, after knocking one of my bruises on my hand, I burst into tears, and he gave me the biggest hug. It was painful, but I was also feeling emotionally overwhelmed and it all came pouring out. On our way home, he treat us to sushi and some Yorkshire Ales, and then he spent the whole evening chilling with me.