Monday 10th March
Ok, put the kettle on, make a cup/ pot of tea and relax...this isn't going to be the most upbeat post but one that needs to be captured, as part of the journey.
So this was it..showtime. We arrived at the hospital at 10. I took and a deep breath and felt the tears start to come. It was like the first day of anything feeling, apprehension and as with some cases not wanting to go in. After a couple of minutes and several hugs later, I pulled myself together. I just didn't have an option of not going in...not get out clause...you've got to go in. Ok. Let's do this.
We headed into the hospital and walked up to the Kensington Suite and I was shown to my room, no.142. A couple of minutes later Kim arrived. I had my dream team to support me through round 1. I need to write soon about how wonderful Kim is and how I'd be lost without her in my life...she's a true friend, in fact she's more than that, she's part of my family. But that will really send me over the edge into a pool of tears and I need to get through writing this entry...so another time.
I had made the decision to try using the cold cap. This is a plastic swimming cap that is set to -6 degrees with the aim of freezing your follicles to try to slow down/ potentially prevent (wishful thinking) hair loss. Anything is worth a shot! The cold cap goes on 30 minutes before treatment and remains on until 90 mins after the last drug has been given. The machine is then switched off but you have to wait for some defrosting time before the the cap can be removed. Fun! ; ) Magic cream was applied to my hand and I was glad of this as it turned out it was tricky to get a line into my hand, so at least I didn't feel it too much. So initial set up complete, we had to await the blood test results to see if I was ok to have the chemo.
Photo no.42 - grumpy, chubby cheek jockey!
The blood test results came back fine so time for the chemo to go in. FEC consists of 3 drugs so it meant that they were administered one after another. It's a strange feeling knowing that a toxin is going into you but I've had to view it as medicine rather than 'poison' as my breast consultant dubbed it. Bev and Regina were my nurses that day and they were truly wonderful and I'm filled to the brim with admiration for these ladies who make such a life changing experience for people like myself bearable if not good. My dream team of support worked really well, as it meant Kim and I chatted whilst Daniel emailed etc. It also meant that Daniel could escape and get some much needed fresh air plus we could put in our Caffe Nero orders!
Photo no.43 - hot chocolate & homework (aka a medical form)!
Photo no.43 - hot chocolate & homework (aka a medical form)!
Once the last drug had gone in, Kim and I had a countdown of minutes until the cold cap could be turned off. I also kept pressing it onto my head, as surely it should be colder than this? I actually didn't feel cold elsewhere so it was completely tolerable, something I know that varies greatly person to person. Going to the toilet was also a interesting challenge, thankfully the cap could be unplugged for quick toilet breaks but I still had the fun of trying to do this one handed. A new skill achieved with some help! I also had to remember that one of the drugs was red...so to coin Jane's phrase, what goes in red, comes out red...do not freak out that it could be anything else! Finally the cap came off and it was home time. Complete with a large bag of drugs to combat the affects of the chemo drugs, we walked to the car. Aside from feeling slightly spaced out, I wasn't feeling too bad. Big hug with Kim and we headed home.
Straight to the sofa for some relaxing time. As the evening progressed, I felt woozier, tired but not too sick, which was great. Maggie (Daniel's mum), was the chef for the week and had thoughtfully made a salmon and sundried tomato salad....but you know how it is when you're feeling rough, fish is not such a great idea. So instead, Daniel rustled up some plan pasta for me with a sprinkling of cheese, which I completely finished along with an apple for dessert. Thankfully, I didn't miss a single meal this week. After dinner, I headed back to the sofa for some pre bed relaxing time. As expected I had a metallic taste in my mouth, which meant that ginger and lemongrass squash was the drink of choice. I got into bed about 22.30 feeling exhausted. Day 1 done.
I woke up in the middle of the night feeling really sick but thankfully this passed relatively quickly...getting back to sleep was another matter entirely. Tired but wired is the phrase that seems to fit.
Tuesday 11th March
Day 2 of the chemo journey. Ouch!!! Woke up with the worst hangover head...time for some paracetamol!! Aside from still feeling a bit woozy, I was surprised at how much better I felt already. Sure I felt rinsed out but nowhere near as bad as I had anticipated I might feel. Breakfast was made by my in house chef and after this and a cocktail of drugs, I headed back to the sofa. My only social arrangement of the day, was heading back to the hospital for another anti nausea drug to be injected...apparently this is something that I could do myself...mmn no thanks!!! Also, there is a certain comfort factor to knowing I'm going in so that I can ask any questions about how I'm feeling. My mum took me over to the hospital for this appointment (thank mummy!). We were asked to wait in the main chemo area....there were a few others receiving chemo that day...it has to be said that they were probably a good 30 years or so my senior...there was a good feeling of camaraderie but it confirmed to me that I need to be in my own space for my treatment. The angel, that is Regina, jabbed me in the stomach and I was good to go!
Back at home, I dozed on the sofa and waited for Daniel to come home from work. I woke up to see his cheeky eyes peering through the bannister, so I jumped up and gave him a massive hug. I was so pleased to see him. Dinner that night was great, as I was able to eat normal food.
Photo no.44 - world's strongest (wo)-man!
Since my biopsy, I've had to do daily exercises to avoid cording in my arm. Daniel jokes that when I'm doing this it sounds like I'm in training for the world's strongest man competition.
Straight to the sofa for some relaxing time. As the evening progressed, I felt woozier, tired but not too sick, which was great. Maggie (Daniel's mum), was the chef for the week and had thoughtfully made a salmon and sundried tomato salad....but you know how it is when you're feeling rough, fish is not such a great idea. So instead, Daniel rustled up some plan pasta for me with a sprinkling of cheese, which I completely finished along with an apple for dessert. Thankfully, I didn't miss a single meal this week. After dinner, I headed back to the sofa for some pre bed relaxing time. As expected I had a metallic taste in my mouth, which meant that ginger and lemongrass squash was the drink of choice. I got into bed about 22.30 feeling exhausted. Day 1 done.
I woke up in the middle of the night feeling really sick but thankfully this passed relatively quickly...getting back to sleep was another matter entirely. Tired but wired is the phrase that seems to fit.
Tuesday 11th March
Day 2 of the chemo journey. Ouch!!! Woke up with the worst hangover head...time for some paracetamol!! Aside from still feeling a bit woozy, I was surprised at how much better I felt already. Sure I felt rinsed out but nowhere near as bad as I had anticipated I might feel. Breakfast was made by my in house chef and after this and a cocktail of drugs, I headed back to the sofa. My only social arrangement of the day, was heading back to the hospital for another anti nausea drug to be injected...apparently this is something that I could do myself...mmn no thanks!!! Also, there is a certain comfort factor to knowing I'm going in so that I can ask any questions about how I'm feeling. My mum took me over to the hospital for this appointment (thank mummy!). We were asked to wait in the main chemo area....there were a few others receiving chemo that day...it has to be said that they were probably a good 30 years or so my senior...there was a good feeling of camaraderie but it confirmed to me that I need to be in my own space for my treatment. The angel, that is Regina, jabbed me in the stomach and I was good to go!
Back at home, I dozed on the sofa and waited for Daniel to come home from work. I woke up to see his cheeky eyes peering through the bannister, so I jumped up and gave him a massive hug. I was so pleased to see him. Dinner that night was great, as I was able to eat normal food.
Photo no.44 - world's strongest (wo)-man!
Since my biopsy, I've had to do daily exercises to avoid cording in my arm. Daniel jokes that when I'm doing this it sounds like I'm in training for the world's strongest man competition.
At the end of Tuesday, I was really pleased with the progress I had made. So much so, I thought I'd be feeling fairly normal on Wednesday.....Overnight on Tuesday, I woke up in a complete sweat. Quick thermometer check, phew my temperature was normal. Ah here comes the menopause like symptoms...hot flushes! Brilliant!
Wednesday 12th March
Sleep again had been a challenge over night and I was 'lucky' to have another hangover without having gone to the party. Aside from this I was feeling pretty good until I took my drug cocktail, one of which was a steroid. As the morning progressed, I started to feel worse, chest/ throat tightening and feeling extremely spaced out. My brain felt like mush and multi tasking was impossible. Not good for someone like me!!! Could it be the cocktail making me feel this way? Who knows?
I took a walk out with Lars (Daniel's dad) to pick up a prescription. It was good to get some fresh air and get the body moving. I was still concerned about my chest feeling tight, as any sign of infection needs to be caught and treated early. On our way back I popped into Rachel's for a cup of tea. I explained how I was feeling and she said I should call the hospital to see what they thought. Thanks Rach for taking control and making me do it, as I felt so relieved afterwards. I called and spoke to Regina who felt things were fine but said to keep checking my temperature as this was the best indicator. Breathe......
Photo no.45 - some Maddie therapy....
Wednesday 12th March
Sleep again had been a challenge over night and I was 'lucky' to have another hangover without having gone to the party. Aside from this I was feeling pretty good until I took my drug cocktail, one of which was a steroid. As the morning progressed, I started to feel worse, chest/ throat tightening and feeling extremely spaced out. My brain felt like mush and multi tasking was impossible. Not good for someone like me!!! Could it be the cocktail making me feel this way? Who knows?
I took a walk out with Lars (Daniel's dad) to pick up a prescription. It was good to get some fresh air and get the body moving. I was still concerned about my chest feeling tight, as any sign of infection needs to be caught and treated early. On our way back I popped into Rachel's for a cup of tea. I explained how I was feeling and she said I should call the hospital to see what they thought. Thanks Rach for taking control and making me do it, as I felt so relieved afterwards. I called and spoke to Regina who felt things were fine but said to keep checking my temperature as this was the best indicator. Breathe......
Photo no.45 - some Maddie therapy....
Photo no.46 - and some more Maddie healing...
Feeling more relaxed after a couple of hours with these ladies, I headed home. The one feeling from this day was frustration...I felt that at the end of Tuesday, I had made such a good come back from Monday that by Wednesday I would be feeling pretty good. This had not been the case and I couldn't understand why...it seemed that I was now being affected by psychological side affects rather than physical.
Thursday 13th March
Another hangover, no party having been too....h2o and plenty of it was required!
Anxiety type feelings were kicking in well and truly today. It seemed that I was fine until I took my first cocktail in the morning. Then the adrenalin, tight chest, heart palpitations, etc would kick in. I was due to have a phone call with Jane that day to discuss how I was getting on. But I needed to go in and see her face to face. Thankfully, she said I could that afternoon. It didn't seem fair to ask Daniel to come with me, and I needed someone there who could represent my under performing brain. Who you gonna call??? Debbie Grierson!!! That's right. This amazing lady, was able to come so that was brilliant news. We rendez vous'd in the hospital lobby (after my chauffeur aka Lars W dropped me off) for a pre meeting hug and debrief on the side effects I'd felt. We went up and spent an hour and a half with Jane. I was well and truly told off for introducing Debbie as my boss (by DG!)...so no more mentions of world's best boss (wbb), it'll now just be one of the world's best friends (wbf). These 90 minutes were invaluable and I learnt a lot....taking away the lesson of not beating myself up that I wasn't feeling better sooner. Just roll with it VW! Easier said than done.
Photo no.47 - wbf's debut blog photo!
It was on this day, I made the decision to go live on Facebook with my blog and tell many friends about the situation. I was overwhelmed with the amount of love and heartfelt messages I received from friends and family all over the globe. Please keep these coming as they really spur me on to kick this thing's butt!
Friday 14th March
Black Friday. This was not a good day, in fact it's probably the lowest day I've had so far. Anxiety levels were super high, even though the steroids had been confiscated by Regina on my visit to the hospital the previous day. I felt tearful and panicked and my brain was still mushy/ felt like a bubble. Despite this, I had to head to the hospital for a physio appointment with Diana. My mum had the 'delight' of doing this. She had never seen me like this before, so I can't imagine it was a bundle of joy doing this. When we got back, the sun was shining and all I wanted to do was sit and be peaceful in the sunshine. Which is exactly what I did with my chemo mentor (aka LW) for about 30 minutes. I then found out that my dad might pop in...pop in??? Well this sent my panic levels rising...I just wanted to relax. It sounds pretty anal in hindsight but actually I like to plan my days generally, so this didn't work for me. There was a period of will he won't he come. In the end, I said for him to come as I knew he wanted to see me and I felt bad for saying no. He popped over for a short period and I was really glad he did, as it was good to chat through the week with him.
Earlier that day I had made an appointment to see Dr Ford (my GP), as my chest was still tight and I was feeling concerned about that. So my walking chaperone (LW) and I headed down to the surgery and waited outside for my appointment. Dr waiting rooms always tend to feel slightly warm and stuffy. Dr Ford was brilliant and again provided me with reassurance and good general advice. I'm pleased to say that Daniel and I now, no longer have our mobile phones in the bedroom at night and have gone back to a traditional alarm clock. I would recommend this to anyone.
Feeling slightly better as the day progressed, I decided it was Friday night and a glass of wine was in order. The Amarone was wasted on my decimated taste buds but it was good to be doing something 'normal'.
We also said goodbye to Daniel's parents, as they were leaving early the next morning to head back to Sweden. I am so grateful for everything they did that week, particularly it was good for Daniel to have their support. Tack så mycket!
Saturday 15th March
Better sleep...at last. I still had the foggy head feeling (chemo brain) and some anxiety but I was feeling a whole heap better than black Friday. The other thing that helped was having Daniel at home. We realised that we had barely spent any time together following the chemo session on Monday, so this weekend was our time. We had a relaxing morning and then wandered into Maidenhead, to do a few chores. I remember clinging onto Daniel for dear life. No idea really but just needed to know he was there.
We got home and I flopped onto the bed, a place I very much wanted to stay. Daniel however had other plans, ones which I went along with as I knew he wouldn't push me too much. So at 16.00ish I was bundled into the car and off to Bicester we went. Car journeys are bizarre in the way that you can switch off as a passenger and gaze out of the window and snooze.....so this is what I did!!! Arriving at Bicester village, I felt a bit like a zombie. The good thing was that my adrenalin levels felt like they had reduced but I still walked around the village spaced out. We were there literally 20 minutes, enough time for Daniel to pick up 3 work shirts. Top Bicester Village tip - get there after 5pm on a Saturday and the parking is tolerable and actually it's pretty decent to walk around, even if you feel like you're floating!
Next stop after the swift shirt shop, was to go and see Ben and Emily. We've been friends with these wonderful people for quite a while. They have been part of our life events over the past decade or so (argh we're getting old!!!) and it's always a pleasure to spend time with them from afternoon teas to geocaching to eating swedish naans...On this occasion however, I just wanted to head home. But it turns out that laughter is the best medicine and after an evening with these fab people I was feeling a million times better. So a huge heartfelt thank you to Ben and Emily for a truly brilliant evening and making me feel human again. Ems - the pizzas were awesome...no need for anymore Pizza Express visits! And another thank you to Daniel for arranging this....you needed this as much as I did if not more, so it was wonderful to see you relax and laugh.
Photo no.48 - pizza night! Photo courtesy and copyright of Ben Smith - www.bensmithphotographs.co.uk. Quality of photo impaired by equipment used (ie. my iPhone!)
I think this herein ends the chemo week chronicle. It had some highs and some unexpected lows. The main thing was that I had done it with the help and support of many loved ones. Thank you each and everyone of you who played your parts in getting me through it. Huge love from me to all of you. xxx
Feeling more relaxed after a couple of hours with these ladies, I headed home. The one feeling from this day was frustration...I felt that at the end of Tuesday, I had made such a good come back from Monday that by Wednesday I would be feeling pretty good. This had not been the case and I couldn't understand why...it seemed that I was now being affected by psychological side affects rather than physical.
Thursday 13th March
Another hangover, no party having been too....h2o and plenty of it was required!
Anxiety type feelings were kicking in well and truly today. It seemed that I was fine until I took my first cocktail in the morning. Then the adrenalin, tight chest, heart palpitations, etc would kick in. I was due to have a phone call with Jane that day to discuss how I was getting on. But I needed to go in and see her face to face. Thankfully, she said I could that afternoon. It didn't seem fair to ask Daniel to come with me, and I needed someone there who could represent my under performing brain. Who you gonna call??? Debbie Grierson!!! That's right. This amazing lady, was able to come so that was brilliant news. We rendez vous'd in the hospital lobby (after my chauffeur aka Lars W dropped me off) for a pre meeting hug and debrief on the side effects I'd felt. We went up and spent an hour and a half with Jane. I was well and truly told off for introducing Debbie as my boss (by DG!)...so no more mentions of world's best boss (wbb), it'll now just be one of the world's best friends (wbf). These 90 minutes were invaluable and I learnt a lot....taking away the lesson of not beating myself up that I wasn't feeling better sooner. Just roll with it VW! Easier said than done.
Photo no.47 - wbf's debut blog photo!
It was on this day, I made the decision to go live on Facebook with my blog and tell many friends about the situation. I was overwhelmed with the amount of love and heartfelt messages I received from friends and family all over the globe. Please keep these coming as they really spur me on to kick this thing's butt!
Friday 14th March
Black Friday. This was not a good day, in fact it's probably the lowest day I've had so far. Anxiety levels were super high, even though the steroids had been confiscated by Regina on my visit to the hospital the previous day. I felt tearful and panicked and my brain was still mushy/ felt like a bubble. Despite this, I had to head to the hospital for a physio appointment with Diana. My mum had the 'delight' of doing this. She had never seen me like this before, so I can't imagine it was a bundle of joy doing this. When we got back, the sun was shining and all I wanted to do was sit and be peaceful in the sunshine. Which is exactly what I did with my chemo mentor (aka LW) for about 30 minutes. I then found out that my dad might pop in...pop in??? Well this sent my panic levels rising...I just wanted to relax. It sounds pretty anal in hindsight but actually I like to plan my days generally, so this didn't work for me. There was a period of will he won't he come. In the end, I said for him to come as I knew he wanted to see me and I felt bad for saying no. He popped over for a short period and I was really glad he did, as it was good to chat through the week with him.
Earlier that day I had made an appointment to see Dr Ford (my GP), as my chest was still tight and I was feeling concerned about that. So my walking chaperone (LW) and I headed down to the surgery and waited outside for my appointment. Dr waiting rooms always tend to feel slightly warm and stuffy. Dr Ford was brilliant and again provided me with reassurance and good general advice. I'm pleased to say that Daniel and I now, no longer have our mobile phones in the bedroom at night and have gone back to a traditional alarm clock. I would recommend this to anyone.
Feeling slightly better as the day progressed, I decided it was Friday night and a glass of wine was in order. The Amarone was wasted on my decimated taste buds but it was good to be doing something 'normal'.
We also said goodbye to Daniel's parents, as they were leaving early the next morning to head back to Sweden. I am so grateful for everything they did that week, particularly it was good for Daniel to have their support. Tack så mycket!
Saturday 15th March
Better sleep...at last. I still had the foggy head feeling (chemo brain) and some anxiety but I was feeling a whole heap better than black Friday. The other thing that helped was having Daniel at home. We realised that we had barely spent any time together following the chemo session on Monday, so this weekend was our time. We had a relaxing morning and then wandered into Maidenhead, to do a few chores. I remember clinging onto Daniel for dear life. No idea really but just needed to know he was there.
We got home and I flopped onto the bed, a place I very much wanted to stay. Daniel however had other plans, ones which I went along with as I knew he wouldn't push me too much. So at 16.00ish I was bundled into the car and off to Bicester we went. Car journeys are bizarre in the way that you can switch off as a passenger and gaze out of the window and snooze.....so this is what I did!!! Arriving at Bicester village, I felt a bit like a zombie. The good thing was that my adrenalin levels felt like they had reduced but I still walked around the village spaced out. We were there literally 20 minutes, enough time for Daniel to pick up 3 work shirts. Top Bicester Village tip - get there after 5pm on a Saturday and the parking is tolerable and actually it's pretty decent to walk around, even if you feel like you're floating!
Next stop after the swift shirt shop, was to go and see Ben and Emily. We've been friends with these wonderful people for quite a while. They have been part of our life events over the past decade or so (argh we're getting old!!!) and it's always a pleasure to spend time with them from afternoon teas to geocaching to eating swedish naans...On this occasion however, I just wanted to head home. But it turns out that laughter is the best medicine and after an evening with these fab people I was feeling a million times better. So a huge heartfelt thank you to Ben and Emily for a truly brilliant evening and making me feel human again. Ems - the pizzas were awesome...no need for anymore Pizza Express visits! And another thank you to Daniel for arranging this....you needed this as much as I did if not more, so it was wonderful to see you relax and laugh.
Photo no.48 - pizza night! Photo courtesy and copyright of Ben Smith - www.bensmithphotographs.co.uk. Quality of photo impaired by equipment used (ie. my iPhone!)
Arriving home that evening (early doors at 10pm!), I felt as if the previous few days had been a dream. Clearly they hadn't but it was a glimpse into a post treatment world that I can't wait to get to.
Sunday 16th March
Wow, best night's sleep all week!
Waking up my head was starting to feel slightly clearer as well. Today I wanted to test out driving. I felt rather anxious about doing this as I hadn't driven for 2.5 weeks due to the biopsy and once I was up my head was still slightly spaced out. But what the heck, life goes on so get behind that wheel VW! I dropped Daniel at the gym and headed onto Waitrose...you can do this, just focus. It felt like I floated around Waitrose in a bubble but I had a list to go from so I just followed that and kept going. I then drove home...I had done it! Woohoo! It sounds so silly writing this but it actually felt like an achievement. One often takes doing simple things like this for granted but I can appreciate how hard these tasks can be for some people.
Back home and it was time to write up my side effect notes from the week...I'm sure this doesn't surprise you at all. If I can't be in control then at least my notebook is there is give Daniel the info he needs and or pass onto the relevant medical team. Given the state of my mind this actually took quite a while but it was good to focus, aside from listening the trampoline chants of the children next door and their delightful laughter!
It was such a lovely day, it has to be said for the whole of week 1 chemo, the weather was fantastic, which made a real difference. I always find you feel better with some sunshine on you.
We decided to head out for a walk. Over to Hambleden then! Hambleden is another special place for Daniel and I. We've spent hours walking in the hills around the village, walking over the weir to walk along the tow path into Henley. We were married in Hambleden church and were fortunate enough to have our wedding reception on Temple Island, so this area is close to our hearts. We decided to head to the river and then walk in the direction away from Henley. This provides a beautiful walk as it's quieter than going the other way and the scenery is spectacular, especially on a day such as this. There's a lovely pub (we didn't go in - promise!) called The Flowerpot Hotel, where you buy fresh eggs at the bar. Fresh air and a walk with my lovely D, what more could I ask for on a Sunday afternoon (aside from a clear head!)...bliss.
Photo no.49 - D&V together - simply the best.
No comments:
Post a Comment