Dad died on the 21st March. I cannot write about it now. It has taken nearly two months for the tears to properly come and now they won't stop.
On 27th December I was in a nasty car crash. I had just dropped Mum home and was returning to Mother-in-law's house. As I was making a right turn, a taxi driver sped into the driver's side of my car. The impact was terrifying.
So much has happened since, that I have managed to forget most of the fear and upset and can now hopefully give you a quick version of events. A young lady appeared in the passenger side of my car and said she'd seen the other driver speeding in the previous village. Another lady had seen him jump the lights and drive into me and between them they swapped details. I was in pain, neck, back, shoulder, leg.
An ambulance arrived and I wasn't allowed to move. It took over three hours to cut me out of the car and take me to hospital. I was strapped to a board and put in an inflatable full body splint.
Finally after multiple xrays and some heavy pain relief I was allowed to leave in the early hours of the morning.
I have been treated for whiplash and my treatment for that and the rest of the soft tissue damage is ongoing. I am also attending counselling sessions prescribed by the NHS to try and deal with the last couple of years. The insurance company have assessed me and recommend a further 8 months of treatment and have requested a psychological examination to assess the damage the crash has done to my mental health.
I'm still driving, obviously had the fun task of finding another car. I drove over 2000 miles in 4 weeks during February and March, backwards and forwards from Dad. I still think someone is going to drive into me at junctions and I am a more nervous driver now than I was before. But compared to everything else, the crash was a minor hiccup.
The other driver has been prosecuted and has been on a safe driving course which he had to pay for.
Dad's illness and death has been all encompassing, because I don't feel ready or in the mood to write about it, it's left me very little to write about which is why it's taken me so long to get back on the keyboard. I thought today that I would just give myself an hour and see what comes.
I guess this has been a blog about my health so I will carry on with that.
I've been trucking along, not really with any time to consider how I was feeling physically. I have had periods of intense frustration at my lack of physical strength , especially my left arm and my stamina. I get tired very easily and by the time the children are in bed I'm often on my knees. I started to feel very dizzy but none of us was eating or sleeping properly so I put it down to that and the emotional stress of Dad being so unwell.
I finally went to the doctor after Dad's funeral. I couldn't ignore the fact that I felt so faint so frequently. My blood pressure is very low. This is normal for me but it's extremely low at the moment. There is probably no reason for this and there isn't really anything that can be done about it. I am trying to get as fit as I can to counteract the effects.
The doctor also took some bloods to check my iron levels. I had a call a week later on Thursday 8th May saying that my iron levels looked fine but they had incidentally found that my white blood cell (neutrophil) count was very low and could I come in immediately for another blood test.
I went in on the Friday morning and had another test. There are very few things that can effect your white blood cells, especially over periods of time as our body replaces them constantly. Drugs can do it and did for me when I was on chemo. (but I finished that over a year ago) Other than that, there's AIDS, Leukaemia or Blood Cancer. I know I don't have AIDS and tried not to worry about the other possibilities. It was a hard weekend.
On the Monday I couldn't take it any more and went to see the GP for reassurance. My results were already back from the second test and unfortunately hadn't changed. They are at 1.3 (normal range would be somewhere from 4 to 11). Under 1 is considered neutropaenic and I would have to be in hospital or at least in quarantine. The GP thinks its a side effect of my Tamoxifen and they will keep a close eye on it.
I felt elated and buzzed through the week. On Thursday I emailed my breast care nurse at Guys the good news (I'd texted her at the weekend fearing the worst). Last Friday I received an email back from her. It said that low WBC count is a very rare side effect of Tamoxifen. She is arranging an appointment with an oncologist. Another weekend of worry.
Yesterday I called her for a chat, and to chase the oncology appointment. She thinks the low WBC are as a result of the chemotherapy last year. This isn't a common occurrence but it does sometimes happen. The bone marrow gets such a hammering that it can, in rare cases take a very long time to recover. I guess this is what I'm hoping for.
So I suppose I'm a bit in limbo. I'm hoping the appointment will come through quickly but it can take time. I think next Wednesday would be the first possible time so fingers crossed it will be then. In the mean time I'll carry on painting the house and trying not to worry. (and thinking of fun, positive and optimistic things to write about in my blog!)
Thursday, 22 May 2014
Tuesday, 24 December 2013
Sixty Six
I was trotting along, settling in, getting used to things and then BANG! Everything changed. Almost overnight.
On Sunday 10th December I had a conversation with my dad on the phone. I hadn't spoken to him for a while, he had been working and is always terrible at keeping in touch when he's got a long job on. I knew he hadn't been well. My husband had seen him the weekend before and was worried about him. Thought he was completely exhausted. The phone conversation threw me into a flat spin. He not only sounded confused and slightly slurred but admitted to having problems spelling simple words and remembering things.
The next morning I dropped the kids at school and drove straight to Kent to see him. He was unable to work and struggling at home with simple tasks. I thought maybe he'd had a stroke. We spoke to his Doctor on the phone and made an appointment for the next day. I returned home. Tuesday morning I dropped the kids at school and drove back to Kent. We went to the Doctor and explained the problems he'd been having. She examined him thoroughly and gave him antibiotics for a chest infection. She made a request for an urgent referral to a Neurologist and suggested possible mini strokes, a nervous breakdown or potentially something putting pressure on part of his brain.
I drove back to London and was replaced by my Sister who raced up from Cornwall on the train. She has taken over my role as big Sister and has been truly amazing. My Brother was there too and on the Wednesday My Dad's lovely Girlfriend returned from London where she had been working for the beginning of the week (she normally spends Monday-Wednesday in town). They muddled through and although he was happy and relaxed having them all there taking care of him, the symptoms kept returning.
On Friday afternoon my Sister phoned to say he'd had some sort of fit. She thought it was a stroke so she called an ambulance. We dropped the girls with friends and drove back down. He had to endure a whole heap of tests including a chest xray which showed lesions on his right lung. A CT scan showing a mass and some fluid on his brain and a series of questions and tests to ascertain his levels of confusion and co-ordination. He was cheerful throughout and it sounded like there was a party coming from his cubicle in A&E.
He spent the weekend holding court in his own private room. A constant stream of visitors. He also had further scans and an MRI. He was given steroids which immediately returned his marbles. He looked rested and we all felt much more positive.
On Monday 16th I drove back down to Kent to take my Mum out for her Birthday lunch and pop in on Dad. On our way out we got a call from Dad, he was upset. We drove straight to the Hospital. He had been given his diagnosis. Mum didn't get her Birthday lunch.
My Dad has been diagnosed with terminal lung cancer. He has a tumour in the bottom of his right lung. It has spread, via his lymphatic system to his brain where he has two tumours and to his adrenal gland which is on his right, just above his kidney.
I can't even begin to put into words, the emotional effect of this news on us all. I can't even start to try. I can only tell you the facts right now and hope that in doing so I can somehow lessen the constant sickness in my stomach.
So, we have been coping. Pulling together. On Tuesday 17th his Sister arrived from Canada, on her Birthday. Herself a cancer survivor. They let Dad go home and my Sister finally headed back to Cornwall to try and prepare for Christmas. My Brother stopped working to spend as much time as possible helping out. I drove backwards and forwards.
We are still in shock. Unfortunately it does nothing to mask the pain. We move forwards, we smile for the kids. I've cried a bit, not enough, still terrified to really let go. Not one of us can sleep properly. I have prayed, broken down in the street and laughed and loved with my family.
If this is a test, I'm not convinced we can pass it. It's becoming more and more difficult to stay buoyant, stay positive. The rational me is taking a battering.
Dad is doing well. He feels surrounded by Love. He has a wonderful woman. He feels he's had a great life. Today he had some really good news. He had a meeting with the Oncologists who have prescribed a course of Radiotherapy on his brain. They would like to try to shrink the tumours down sufficiently to stop the steroids. This will start urgently, as soon as they have a machine spare. We are hoping for a cancellation.
They are going to take a biopsy of his chest and when they have his brain cancer under control they are going to give him Chemotherapy to treat the rest. This will buy him time. How much time, no one can say. He is thrilled with this news. Happy that they think it's worth his while. When I'm with him, the pain goes away a bit. The rest of the time, it's almost too much to bear. It was so much easier when it was all about me. But it's not now and Cancer was one experience I didn't want to share.
On Sunday 10th December I had a conversation with my dad on the phone. I hadn't spoken to him for a while, he had been working and is always terrible at keeping in touch when he's got a long job on. I knew he hadn't been well. My husband had seen him the weekend before and was worried about him. Thought he was completely exhausted. The phone conversation threw me into a flat spin. He not only sounded confused and slightly slurred but admitted to having problems spelling simple words and remembering things.
The next morning I dropped the kids at school and drove straight to Kent to see him. He was unable to work and struggling at home with simple tasks. I thought maybe he'd had a stroke. We spoke to his Doctor on the phone and made an appointment for the next day. I returned home. Tuesday morning I dropped the kids at school and drove back to Kent. We went to the Doctor and explained the problems he'd been having. She examined him thoroughly and gave him antibiotics for a chest infection. She made a request for an urgent referral to a Neurologist and suggested possible mini strokes, a nervous breakdown or potentially something putting pressure on part of his brain.
I drove back to London and was replaced by my Sister who raced up from Cornwall on the train. She has taken over my role as big Sister and has been truly amazing. My Brother was there too and on the Wednesday My Dad's lovely Girlfriend returned from London where she had been working for the beginning of the week (she normally spends Monday-Wednesday in town). They muddled through and although he was happy and relaxed having them all there taking care of him, the symptoms kept returning.
On Friday afternoon my Sister phoned to say he'd had some sort of fit. She thought it was a stroke so she called an ambulance. We dropped the girls with friends and drove back down. He had to endure a whole heap of tests including a chest xray which showed lesions on his right lung. A CT scan showing a mass and some fluid on his brain and a series of questions and tests to ascertain his levels of confusion and co-ordination. He was cheerful throughout and it sounded like there was a party coming from his cubicle in A&E.
He spent the weekend holding court in his own private room. A constant stream of visitors. He also had further scans and an MRI. He was given steroids which immediately returned his marbles. He looked rested and we all felt much more positive.
On Monday 16th I drove back down to Kent to take my Mum out for her Birthday lunch and pop in on Dad. On our way out we got a call from Dad, he was upset. We drove straight to the Hospital. He had been given his diagnosis. Mum didn't get her Birthday lunch.
My Dad has been diagnosed with terminal lung cancer. He has a tumour in the bottom of his right lung. It has spread, via his lymphatic system to his brain where he has two tumours and to his adrenal gland which is on his right, just above his kidney.
I can't even begin to put into words, the emotional effect of this news on us all. I can't even start to try. I can only tell you the facts right now and hope that in doing so I can somehow lessen the constant sickness in my stomach.
So, we have been coping. Pulling together. On Tuesday 17th his Sister arrived from Canada, on her Birthday. Herself a cancer survivor. They let Dad go home and my Sister finally headed back to Cornwall to try and prepare for Christmas. My Brother stopped working to spend as much time as possible helping out. I drove backwards and forwards.
We are still in shock. Unfortunately it does nothing to mask the pain. We move forwards, we smile for the kids. I've cried a bit, not enough, still terrified to really let go. Not one of us can sleep properly. I have prayed, broken down in the street and laughed and loved with my family.
If this is a test, I'm not convinced we can pass it. It's becoming more and more difficult to stay buoyant, stay positive. The rational me is taking a battering.
Dad is doing well. He feels surrounded by Love. He has a wonderful woman. He feels he's had a great life. Today he had some really good news. He had a meeting with the Oncologists who have prescribed a course of Radiotherapy on his brain. They would like to try to shrink the tumours down sufficiently to stop the steroids. This will start urgently, as soon as they have a machine spare. We are hoping for a cancellation.
They are going to take a biopsy of his chest and when they have his brain cancer under control they are going to give him Chemotherapy to treat the rest. This will buy him time. How much time, no one can say. He is thrilled with this news. Happy that they think it's worth his while. When I'm with him, the pain goes away a bit. The rest of the time, it's almost too much to bear. It was so much easier when it was all about me. But it's not now and Cancer was one experience I didn't want to share.
Thursday, 5 December 2013
Sixty Five
The wind is howling outside. I'm in bed with all my clothes on. Because I've written so much of my blog in bed, it seems to be the only place I feel comfortable doing it. That and the fact that the house is cold and if I sit still for an hour I will freeze! Our bed is at the top of the house, in what used to be the attic. We had it converted when we were told we needed a whole new roof. In for a penny and all that. Unfortunately because I was so heavily pregnant at the time and didn't keep nearly as close an eye on the build as I should have done, you really do feel out in the elements. Today I can feel the house being buffeted and hear the wind outside. When it rains, it sounds like someone is dropping pebbles on the roof just above our heads. In the summer it gets so hot we have to sleep with all the windows open. Basically it's like living in a caravan on the top of our house. That's probably why I love it so much.
It's beginning to feel a lot like Christmas. The girls have written their lists, I have tried my best to make sure they're not too disappointed. The house is getting festive (more so when I finally get round to buying a tree) and you can't leave the house without falling into a local Christmas gathering. I'm super chuffed to be in more of a position to enjoy it than last year, it's hard to go back and think about the lead up to that Christmas. The children have assured me that this will be the best Christmas ever.
On the weekend of 23rd November we drove to the Cotswolds. One of the twins lives there with his glamorous, brilliant, ever-busy wife and three kids. We walked and cooked and caught up and prepared for their first dinner party in the house with local friends they have met since moving there. It was a freezing cold night and the house was steaming hot with all the open fires blazing. The food was delicious and the company friendly and fun. I did fall slightly off the wagon but tried not to regret it too much in the morning as it had been such fun.
We took our hangovers, the next day, to the pub. Where all good hangovers should go. We managed to meet up with some dear friends who we haven't seen for ages and all go for a good Cotswolds stomp together.
This not-drinking thing gets very hard at this time of year. In fact it was pretty hard in the summer too - no long gin and tonics in Ibiza town.... no cold pints on hot days... But I find it harder around Christmas. All that lovely spicy warm booze laced with sugar. That's a big fat no on both counts. Red wine by the fire. No.Warm apple juice with Bison grass vodka. No. Single malt whiskey at the end of a meal. No (well actually yes, this is still a weakness I'm yet to control).
Aaarrrgghhhh! Flipping laptop keeps crashing! I'm now typing on the iPad. This will be the third lesson. I've been wondering what it would be. The third lesson in backing things up. These lessons always come in threes to make sure you have truly learned them. Firstly the blog, then I lost my phone in the Cotswolds whilst having a wee behind a stone wall on a walk and now my laptop. Great.
Where was I? Ah yes Drinking. Now, Ive never been a huge booze hound but I do like a tipple especially when combined with a dance or a giggle. I tend not to be able to drink to massive excess because I throw up or pass out before that happens but I like to drink in moderation. I've been informed that this has to stop.
During a meeting with a nutritionist I asked about drinking, previously I have been told that if I want to enjoy a glass of wine with dinner then that's fine. This lady told me that because my cancer was hormone reactive I cannot risk drinking at all. Alcohol effects your oestrogen levels and this could kick start growth in any remaining cancer cells. Alcohol also contains stupid amounts of sugar which cancer cells feed on. I asked the 'just one glass a week with food?' question and she said that if I absolutely had to I should have half a glass and really enjoy it and make it last all night!
Seeing as I'm not a huge fan of wine and I don't think she meant half a glass of vodka or whiskey I've been pretty dry for quite some time now. I have asked my Husband to stop offering me a drink when he has one and to stop pouring me a glass on the off chance. This has made it easier at home but it's still hard when we go out. If there is dancing involved I can be distracted but sit down dinners are definitely my Achilles heel. Not to mention 'Christmas drinkies'. Please don't stop inviting me though, I promise not to become a horrendous bore!
What it boils down to is giving my self the best possible shot at survival. I have five years to get through before we know whether the cancer has all gone. This five years is just about to start. I cannot risk the guilt of knowing I could have done more if the cancer comes back. So another clean Christmas for me.
Now, onto treatment. I had my Herceptin on Tuesday. I am thrilled to announce that I only have one dose left and unfortunately that will be on Christmas eve. I am very excited about having the port in my chest removed as it has become more uncomfortable as I lost weight. January will be a new beginning of sorts. Then I have the 1825 day countdown to the day that I will be officially in remission and cancer free.
It's beginning to feel a lot like Christmas. The girls have written their lists, I have tried my best to make sure they're not too disappointed. The house is getting festive (more so when I finally get round to buying a tree) and you can't leave the house without falling into a local Christmas gathering. I'm super chuffed to be in more of a position to enjoy it than last year, it's hard to go back and think about the lead up to that Christmas. The children have assured me that this will be the best Christmas ever.
On the weekend of 23rd November we drove to the Cotswolds. One of the twins lives there with his glamorous, brilliant, ever-busy wife and three kids. We walked and cooked and caught up and prepared for their first dinner party in the house with local friends they have met since moving there. It was a freezing cold night and the house was steaming hot with all the open fires blazing. The food was delicious and the company friendly and fun. I did fall slightly off the wagon but tried not to regret it too much in the morning as it had been such fun.
We took our hangovers, the next day, to the pub. Where all good hangovers should go. We managed to meet up with some dear friends who we haven't seen for ages and all go for a good Cotswolds stomp together.
This not-drinking thing gets very hard at this time of year. In fact it was pretty hard in the summer too - no long gin and tonics in Ibiza town.... no cold pints on hot days... But I find it harder around Christmas. All that lovely spicy warm booze laced with sugar. That's a big fat no on both counts. Red wine by the fire. No.Warm apple juice with Bison grass vodka. No. Single malt whiskey at the end of a meal. No (well actually yes, this is still a weakness I'm yet to control).
Aaarrrgghhhh! Flipping laptop keeps crashing! I'm now typing on the iPad. This will be the third lesson. I've been wondering what it would be. The third lesson in backing things up. These lessons always come in threes to make sure you have truly learned them. Firstly the blog, then I lost my phone in the Cotswolds whilst having a wee behind a stone wall on a walk and now my laptop. Great.
Where was I? Ah yes Drinking. Now, Ive never been a huge booze hound but I do like a tipple especially when combined with a dance or a giggle. I tend not to be able to drink to massive excess because I throw up or pass out before that happens but I like to drink in moderation. I've been informed that this has to stop.
During a meeting with a nutritionist I asked about drinking, previously I have been told that if I want to enjoy a glass of wine with dinner then that's fine. This lady told me that because my cancer was hormone reactive I cannot risk drinking at all. Alcohol effects your oestrogen levels and this could kick start growth in any remaining cancer cells. Alcohol also contains stupid amounts of sugar which cancer cells feed on. I asked the 'just one glass a week with food?' question and she said that if I absolutely had to I should have half a glass and really enjoy it and make it last all night!
Seeing as I'm not a huge fan of wine and I don't think she meant half a glass of vodka or whiskey I've been pretty dry for quite some time now. I have asked my Husband to stop offering me a drink when he has one and to stop pouring me a glass on the off chance. This has made it easier at home but it's still hard when we go out. If there is dancing involved I can be distracted but sit down dinners are definitely my Achilles heel. Not to mention 'Christmas drinkies'. Please don't stop inviting me though, I promise not to become a horrendous bore!
What it boils down to is giving my self the best possible shot at survival. I have five years to get through before we know whether the cancer has all gone. This five years is just about to start. I cannot risk the guilt of knowing I could have done more if the cancer comes back. So another clean Christmas for me.
Now, onto treatment. I had my Herceptin on Tuesday. I am thrilled to announce that I only have one dose left and unfortunately that will be on Christmas eve. I am very excited about having the port in my chest removed as it has become more uncomfortable as I lost weight. January will be a new beginning of sorts. Then I have the 1825 day countdown to the day that I will be officially in remission and cancer free.
Thursday, 21 November 2013
Sixty Four
Well, This is exciting, the first post on the 'new' blog! I'm afraid the excitement will probably end there though as it's been so long since I've written that today will have to be a boring catch up of all things medical.
Firstly back to the blog for a second. It was such an enormous shock to find it missing and I was truly devastated for about 24hours. I hadn't realised that I had written so much, that it was so important to me that the girls can read it at some point, and that I'm actually quite proud of my blog. Aside from raising two lovely little people, this might actually be my biggest achievement to date! The wonderful people at Leftbrain managed to recover a huge amount and we cobbled together the rest. I am still missing number 58 which is a real shame as it described the entire 5 week radiotherapy experience. If any of you have it, please send it to me.
The end of September carried on in the same busy fashion. Macmillan Coffee Morning at school, Massage at St Thomas's, DIY, Husband working late. On the weekend of 28th we went to Kent and collected our caravan for a last hurrah before we deserted it for the winter. Our friend was having his annual birthday party in the clearing where Husband and I got married. It's a lovely little spot with a lawn next to a lake nestled in a small woodland. I first went there in my teens and always wanted to get married there. Since then he has built two spectacular tree houses. My husband and I did have our wedding there in 2008 and our friend has now turned the place into a proper wedding venue. He has built loos and has a beautiful marquee erected for the summers. Sofas swing from the trees and the whole woodland is lit with fairy lights. You can see his website here. Most of the pictures are from my wedding.
Anyway, I'd better not get carried away and start writing about my wedding, I've got a lot to get through! The party was great. The band were terrific and I danced till about 2am when I crashed in my lovely comfy caravan. The next morning I refused to get out of bed and hosted a mega breakfast in bed with all the kids.
On the first of October I had my Herceptin and much to my eldest daughter's annoyance I couldn't make it on her school trip to the London Eye. On Wednesday 2nd I had a review with the Oncologists. They were pleased that I had tolerated the radiotherapy well and all the external scarring had healed. I wanted to talk about the ever important five year countdown, what did it mean? when did it start? what is remission?
I wasn't entirely happy with the answers. My five year countdown won't start until I have finished treatment so this last year of hell doesn't even count. My five years will start in January. I am not in remission. I will not be considered in remission until I have survived that five years cancer free. It was a reminder of my slightly precarious situation. The upside being that I actually have been feeling well enough to convince myself that I might have been in remission (cancer free).
That knocked me back for a few days, followed by a doctors appointment on the third and being told I was losing too much weight and my bmi was on the underweight side. This caused a confusion of mixed feelings. The girl in me rejoiced while the cancer patient worried. I have altered my diet to include a small amount of meat and dairy and generally relaxed my eating habits to include more protein. I can safely say now in the middle of November that it is no longer an issue!
The main realisation to come out of this review was that we aren't moving, we are staying put now for quite some time. We had moved back to London with heads brimming with embrionic plans for the next escape. The itchy feet not at all sated by our year in the countryside and feeling like we had a hole to fill. My meeting with the oncologist underlined the importance of my proximity to the hospital over the next five years. I will not be routinely scanned as each scan can actually raise my chances of the cancer returning. Instead they have what's called a 'Low threshold scan approach'. Basically if I have any complaints at all that could be cancer related, I am immediately scanned. ie, stomach problems, lingering cough, lumps and bumps in my chest wall, any skin changes...
I need to be close to the hospital. It needs to be a good one. I am being treated at the best and I live 15 minutes away. Why would I move? This was a life changing realisation for both of us and one we are both very happy with. I feel that we have settled and put down roots more in the last month than we did in the last 8 years. It's actually very nice to just stop planning. It's the first time I have ever done this and I like it (shame it took a Doctor telling me it could be life saving to stay put but hey ho).
So, with that in mind we have started to think about secondary schools for the girls and we are very lucky to be in an area with lots of good ones. Another bonus! Best of all is being back amongst our friends. There is a wonderful community built up around the school our children go to and I have my old friends who have moved here too. I'm feeling very happy about coming home. It really does feel like HOME, possibly the first real one I've ever had.
Dad got booked on a proper job taking him up to January so he couldn't afford to continue helping me with the DIY for the peanuts I was throwing. We had got a lot done while he was here but there was still so much to do. After he left it ground to a halt. I am having to be so careful with my arm that lifting heavy things is out, as is using power tools. There is only so much I can do between the school drop off and collect. The half finished house was starting to seriously stress me out so I stopped trying and just moved in. Boxes were finally emptied and most of the rooms were usable, if not finished.
I have been trying to visit the Haven once a week. They prescribed me a combination of Aromatherapy massage for stress and to help even out the muscles on my shoulders and arms, counselling and MLD which is medical lymphatic drainage. My arm hasn't swollen any more which is fantastic news. Apart from the prescribed one to ones I've been lucky enough to have, it's just a wonderful place to go. I even like the hour on the train and tube it takes to get there - I read or crochet and it reminds me of going to work. I try and have lunch there when I can as it's always vegan, healthy and delicious.
About a week before October half term my Husband announced that he had managed to take the week off work. I immediately logged onto his airmiles account and booked us a week in Ibiza. We stayed at the same 'cheap as chips' 1970's apartment I had been to with Mum and Sister in the spring. The sun was warm but not burning, the sea was warm, most of the restaurants were closed in the little resorts but open in the main towns. We hired a little pebble of a car and armed with our 'secret beaches of Ibiza' printed from the Internet, we set about exploring the lesser trodden parts of the island. It was an idyllic week.
The combination of the holiday and actually having unpacked most of our stuff helped reduce my stress levels no end. I have had two counselling sessions now too. This week I managed to only talk about my children and how I thought they were doing. I guess all talking helps.
On the 8th November we scooted down to Cornwall to see my Sister and adorable Nephew. I have missed them, especially him as I hadn't seen him since we were in Kent. We went out on Saturday night to the 50th birthday party of the twins eldest brother. It was a great evening with lots of dancing and laughing and seeing old friends. After a lovely roast at the farm shop on Sunday we rushed home.
My birthday was successfully dragged out for as long as possible. I had my herceptin on the actual day which was a pain but I went up to Selfridges where my husband was having a meeting and managed to squeeze a lunch with him in before he had to be there. On the Friday some of my lovely local mums came over for lunch. Then on Sunday I met some other friends and family for a walk and a roast at the Dulwich Woodhouse Pub. That pretty much brings us up to date. I thought I might struggle to write after so long but actually I've had to work really hard to stick to the important facts and not follow my instinctive rambles. Hopefully I won't leave it so long now as I much prefer writing instinctive rambles!
Firstly back to the blog for a second. It was such an enormous shock to find it missing and I was truly devastated for about 24hours. I hadn't realised that I had written so much, that it was so important to me that the girls can read it at some point, and that I'm actually quite proud of my blog. Aside from raising two lovely little people, this might actually be my biggest achievement to date! The wonderful people at Leftbrain managed to recover a huge amount and we cobbled together the rest. I am still missing number 58 which is a real shame as it described the entire 5 week radiotherapy experience. If any of you have it, please send it to me.
The end of September carried on in the same busy fashion. Macmillan Coffee Morning at school, Massage at St Thomas's, DIY, Husband working late. On the weekend of 28th we went to Kent and collected our caravan for a last hurrah before we deserted it for the winter. Our friend was having his annual birthday party in the clearing where Husband and I got married. It's a lovely little spot with a lawn next to a lake nestled in a small woodland. I first went there in my teens and always wanted to get married there. Since then he has built two spectacular tree houses. My husband and I did have our wedding there in 2008 and our friend has now turned the place into a proper wedding venue. He has built loos and has a beautiful marquee erected for the summers. Sofas swing from the trees and the whole woodland is lit with fairy lights. You can see his website here. Most of the pictures are from my wedding.
Anyway, I'd better not get carried away and start writing about my wedding, I've got a lot to get through! The party was great. The band were terrific and I danced till about 2am when I crashed in my lovely comfy caravan. The next morning I refused to get out of bed and hosted a mega breakfast in bed with all the kids.
On the first of October I had my Herceptin and much to my eldest daughter's annoyance I couldn't make it on her school trip to the London Eye. On Wednesday 2nd I had a review with the Oncologists. They were pleased that I had tolerated the radiotherapy well and all the external scarring had healed. I wanted to talk about the ever important five year countdown, what did it mean? when did it start? what is remission?
I wasn't entirely happy with the answers. My five year countdown won't start until I have finished treatment so this last year of hell doesn't even count. My five years will start in January. I am not in remission. I will not be considered in remission until I have survived that five years cancer free. It was a reminder of my slightly precarious situation. The upside being that I actually have been feeling well enough to convince myself that I might have been in remission (cancer free).
That knocked me back for a few days, followed by a doctors appointment on the third and being told I was losing too much weight and my bmi was on the underweight side. This caused a confusion of mixed feelings. The girl in me rejoiced while the cancer patient worried. I have altered my diet to include a small amount of meat and dairy and generally relaxed my eating habits to include more protein. I can safely say now in the middle of November that it is no longer an issue!
The main realisation to come out of this review was that we aren't moving, we are staying put now for quite some time. We had moved back to London with heads brimming with embrionic plans for the next escape. The itchy feet not at all sated by our year in the countryside and feeling like we had a hole to fill. My meeting with the oncologist underlined the importance of my proximity to the hospital over the next five years. I will not be routinely scanned as each scan can actually raise my chances of the cancer returning. Instead they have what's called a 'Low threshold scan approach'. Basically if I have any complaints at all that could be cancer related, I am immediately scanned. ie, stomach problems, lingering cough, lumps and bumps in my chest wall, any skin changes...
I need to be close to the hospital. It needs to be a good one. I am being treated at the best and I live 15 minutes away. Why would I move? This was a life changing realisation for both of us and one we are both very happy with. I feel that we have settled and put down roots more in the last month than we did in the last 8 years. It's actually very nice to just stop planning. It's the first time I have ever done this and I like it (shame it took a Doctor telling me it could be life saving to stay put but hey ho).
So, with that in mind we have started to think about secondary schools for the girls and we are very lucky to be in an area with lots of good ones. Another bonus! Best of all is being back amongst our friends. There is a wonderful community built up around the school our children go to and I have my old friends who have moved here too. I'm feeling very happy about coming home. It really does feel like HOME, possibly the first real one I've ever had.
Dad got booked on a proper job taking him up to January so he couldn't afford to continue helping me with the DIY for the peanuts I was throwing. We had got a lot done while he was here but there was still so much to do. After he left it ground to a halt. I am having to be so careful with my arm that lifting heavy things is out, as is using power tools. There is only so much I can do between the school drop off and collect. The half finished house was starting to seriously stress me out so I stopped trying and just moved in. Boxes were finally emptied and most of the rooms were usable, if not finished.
I have been trying to visit the Haven once a week. They prescribed me a combination of Aromatherapy massage for stress and to help even out the muscles on my shoulders and arms, counselling and MLD which is medical lymphatic drainage. My arm hasn't swollen any more which is fantastic news. Apart from the prescribed one to ones I've been lucky enough to have, it's just a wonderful place to go. I even like the hour on the train and tube it takes to get there - I read or crochet and it reminds me of going to work. I try and have lunch there when I can as it's always vegan, healthy and delicious.
About a week before October half term my Husband announced that he had managed to take the week off work. I immediately logged onto his airmiles account and booked us a week in Ibiza. We stayed at the same 'cheap as chips' 1970's apartment I had been to with Mum and Sister in the spring. The sun was warm but not burning, the sea was warm, most of the restaurants were closed in the little resorts but open in the main towns. We hired a little pebble of a car and armed with our 'secret beaches of Ibiza' printed from the Internet, we set about exploring the lesser trodden parts of the island. It was an idyllic week.
The combination of the holiday and actually having unpacked most of our stuff helped reduce my stress levels no end. I have had two counselling sessions now too. This week I managed to only talk about my children and how I thought they were doing. I guess all talking helps.
On the 8th November we scooted down to Cornwall to see my Sister and adorable Nephew. I have missed them, especially him as I hadn't seen him since we were in Kent. We went out on Saturday night to the 50th birthday party of the twins eldest brother. It was a great evening with lots of dancing and laughing and seeing old friends. After a lovely roast at the farm shop on Sunday we rushed home.
My birthday was successfully dragged out for as long as possible. I had my herceptin on the actual day which was a pain but I went up to Selfridges where my husband was having a meeting and managed to squeeze a lunch with him in before he had to be there. On the Friday some of my lovely local mums came over for lunch. Then on Sunday I met some other friends and family for a walk and a roast at the Dulwich Woodhouse Pub. That pretty much brings us up to date. I thought I might struggle to write after so long but actually I've had to work really hard to stick to the important facts and not follow my instinctive rambles. Hopefully I won't leave it so long now as I much prefer writing instinctive rambles!
Wednesday, 13 November 2013
Sixty Three
Sixty
Three
On
August bank Holiday whilst the rest of the world was enjoying
carnival, we moved house. We were helped along the way by our
magnificent support gang. We didn't actually sleep in the house till
Tuesday night when we brought the girls back for the first time. They
were both nervous and still upset about moving but the minute they
walked through the door they both felt at home. The relief was
obvious and very welcome.
The next few days were spent unpacking the kitchen and bathroom, finding the bare essentials and camping wherever there was a space in the boxes. The house had been looked after by the tenants but they had lots of children and the house is old. There was an enormous amount of 'wear and tear'. We decided to decorate before unpacking (a decision I wouldn't have made in hindsight and have lived to regret a thousand times over!)
On Wednesday 28th I went back to hospital to have my arm measured again. It was carrying a 4% increase in fluid since the scan a month before. This isn't great news but it's not terrible either. I will have it measured again at the end of September and hope it hasn't swollen any more. It hurts every day. Some more than others depending on how much I have used it.
The children were due to start back at school on Wednesday 4th. Daughter 2 still didn't have a place. On Tuesday we went out with her God-Mother for a day at the South Bank and whilst we were there I spoke to Lewisham Education Authority and was told I could take her into School. Amazing news - we were all overjoyed.
Unfortunately she went into a different class to the one she had been in for the two previous years. There are three classes per year group and she didn't know any of the children in this new class. This was compounded by the fact that the teacher was new and also didn't know any of the children. Daughter 2 cried every day for the first two weeks. She played with all her friends at play time then had to leave them for class. She has finally settled in and made some new friends.
Whilst this upset was happening at school, the children were sleeping on the landing at home! We attacked both of their bedrooms at once and sanded the floor in the loft at the same time. Dad stayed too and slept on the sitting room floor amongst the boxes. Husband and I camped down wherever we saw space. With Dad and I working through the day and Husband chipping in whenever work allowed we have finally now all got a bedroom (except Dad who is still on the sitting room floor!).
On Sunday 8th we returned to Kent and took all our unwanted things out of Mother-in-Laws shed and carted them off to the boot fair. I loved the whole experience! We sold a fair amount of stuff and made about £100 which can go straight to B&Q. I was kept on a tight leash and not allowed to buy anything. I managed to sneak a £2 leather handbag with matching purse and a 50p cocktail dress from French Connection. Seriously, boot fairs are where it's at!
On Monday 9th I had my quarterly echo heart scan. I still haven't had the results but the radiographer confirmed the lazy valve and saw a slight thickening in one chamber. I am yet to find out whether that has anything to do with the chest pains. Tuesday 10th and I was back at Guys for my Herceptin, the three weeks seems to come round so quickly at the moment.
Wednesday and Thursday were taken up with welcome meetings at the school and more filling and painting. Lovely friend and I escaped to East Dulwich for lunch and attacked the health food shop with gusto. I have missed all of this. Her, lunch, East Dulwich and the health food shop. It was warming and I really appreciated something that I may have taken for granted before all this happened.
On Friday 13th (I should have known to stay in bed) I went off to St Thomas's Hospital for my first of a three Friday course. It's run by the Penny Brohn Cancer Centre in Bristol and is called 'Living Well'. I was really excited about it and have heard only really good things about the centre. They do amazing work.
Unfortunately it wasn't for me. I arrived a couple of minutes late having run from the school drop-off and charged through the underground. As I arrived, the group were setting up 'ground rules' and they agreed that the first one was time keeping! So it didn't really start well for me. We then went into the introductions. I was the youngest by far and had (apart from one man who was in a pretty bad way) probably the least positive prognosis. Everyone there was so gloomy about their experience that I wanted to shake them. They had basically given up.
I was grouped off with my two next-to's and left in that group all day. I may be generalising enormously but didn't actually get a chance to speak to anyone else on the course. I feel like I am emotionally so far beyond anyone there that it brought me down, and then trod on me. I left feeling low, sad and slightly desperate. Let alone bitterly disappointed. I also missed lunch which as you know is not my favourite thing to do. I took a call from my Husband and was out of the room for about 10 minutes. When I returned there was NOTHING left! No-one had even thought to save me a sandwich.
I haven't been back.
On Monday 16th I had a totally different experience at The Haven. It is a centre for supporting people who have or have had breast cancer. It's in a beautiful old churchy building in Putney. I felt welcome and at home the minute I walked in. I had a wonderful consultation with a lovely lady for an hour where she helped me decide how best to use their services. I will be having some counselling, some aromatherapy massage and some Medical lymphatic drainage. On top of that they have a huge range of groups that I can't wait to get involved in. Plus on Tuesdays they have amazing people come in to make lunch!
The rest of the week was spent registering with a GP, having a nurse check me over, having my first GP appointment for ages, spending £1300 on having the car fixed (the old banger never cost me any money to fix!), painting, and more painting!
On Friday 20th I went off on my own to the opera. My Dad's Girlfriend who works there had sent him up with a ticket for me. It was the final rehersal for Elekra. I spent the first 20 minutes trying not to fall asleep - this was in no way a reflection on the performance, I was just exhausted and it was warm and dark and no-one was aking me to do anything. About half way through people started killing each other and the drama had me gripped till the end. When it was all over I had to stifle sobs of relief for the singers/actors. Luckily I managed - God knows how I'd stop if I really started to cry.
On Saturday morning we finished painting daughter 2's bedroom. Moved all the furniture out of the middle of the room into the hall and the carpet fitter came. I painted red nail varnish over the white paint on my nails, washed my hair and donned a mask. We were throwing a 60th birthday party for Mum in Kent. She was 60 in December when I was in the middle of my chemo and she decided to put it off to a happier time.
I wasn't the only one in a mask, everyone wore one and the effect was great fun. There were a perfect mix of people and the music was cheesey enough to keep me on the dancefloor for nearly 5 hours. The terrible mood I started the day with lifted and we all had a really lovely time.
The next few days were spent unpacking the kitchen and bathroom, finding the bare essentials and camping wherever there was a space in the boxes. The house had been looked after by the tenants but they had lots of children and the house is old. There was an enormous amount of 'wear and tear'. We decided to decorate before unpacking (a decision I wouldn't have made in hindsight and have lived to regret a thousand times over!)
On Wednesday 28th I went back to hospital to have my arm measured again. It was carrying a 4% increase in fluid since the scan a month before. This isn't great news but it's not terrible either. I will have it measured again at the end of September and hope it hasn't swollen any more. It hurts every day. Some more than others depending on how much I have used it.
The children were due to start back at school on Wednesday 4th. Daughter 2 still didn't have a place. On Tuesday we went out with her God-Mother for a day at the South Bank and whilst we were there I spoke to Lewisham Education Authority and was told I could take her into School. Amazing news - we were all overjoyed.
Unfortunately she went into a different class to the one she had been in for the two previous years. There are three classes per year group and she didn't know any of the children in this new class. This was compounded by the fact that the teacher was new and also didn't know any of the children. Daughter 2 cried every day for the first two weeks. She played with all her friends at play time then had to leave them for class. She has finally settled in and made some new friends.
Whilst this upset was happening at school, the children were sleeping on the landing at home! We attacked both of their bedrooms at once and sanded the floor in the loft at the same time. Dad stayed too and slept on the sitting room floor amongst the boxes. Husband and I camped down wherever we saw space. With Dad and I working through the day and Husband chipping in whenever work allowed we have finally now all got a bedroom (except Dad who is still on the sitting room floor!).
On Sunday 8th we returned to Kent and took all our unwanted things out of Mother-in-Laws shed and carted them off to the boot fair. I loved the whole experience! We sold a fair amount of stuff and made about £100 which can go straight to B&Q. I was kept on a tight leash and not allowed to buy anything. I managed to sneak a £2 leather handbag with matching purse and a 50p cocktail dress from French Connection. Seriously, boot fairs are where it's at!
On Monday 9th I had my quarterly echo heart scan. I still haven't had the results but the radiographer confirmed the lazy valve and saw a slight thickening in one chamber. I am yet to find out whether that has anything to do with the chest pains. Tuesday 10th and I was back at Guys for my Herceptin, the three weeks seems to come round so quickly at the moment.
Wednesday and Thursday were taken up with welcome meetings at the school and more filling and painting. Lovely friend and I escaped to East Dulwich for lunch and attacked the health food shop with gusto. I have missed all of this. Her, lunch, East Dulwich and the health food shop. It was warming and I really appreciated something that I may have taken for granted before all this happened.
On Friday 13th (I should have known to stay in bed) I went off to St Thomas's Hospital for my first of a three Friday course. It's run by the Penny Brohn Cancer Centre in Bristol and is called 'Living Well'. I was really excited about it and have heard only really good things about the centre. They do amazing work.
Unfortunately it wasn't for me. I arrived a couple of minutes late having run from the school drop-off and charged through the underground. As I arrived, the group were setting up 'ground rules' and they agreed that the first one was time keeping! So it didn't really start well for me. We then went into the introductions. I was the youngest by far and had (apart from one man who was in a pretty bad way) probably the least positive prognosis. Everyone there was so gloomy about their experience that I wanted to shake them. They had basically given up.
I was grouped off with my two next-to's and left in that group all day. I may be generalising enormously but didn't actually get a chance to speak to anyone else on the course. I feel like I am emotionally so far beyond anyone there that it brought me down, and then trod on me. I left feeling low, sad and slightly desperate. Let alone bitterly disappointed. I also missed lunch which as you know is not my favourite thing to do. I took a call from my Husband and was out of the room for about 10 minutes. When I returned there was NOTHING left! No-one had even thought to save me a sandwich.
I haven't been back.
On Monday 16th I had a totally different experience at The Haven. It is a centre for supporting people who have or have had breast cancer. It's in a beautiful old churchy building in Putney. I felt welcome and at home the minute I walked in. I had a wonderful consultation with a lovely lady for an hour where she helped me decide how best to use their services. I will be having some counselling, some aromatherapy massage and some Medical lymphatic drainage. On top of that they have a huge range of groups that I can't wait to get involved in. Plus on Tuesdays they have amazing people come in to make lunch!
The rest of the week was spent registering with a GP, having a nurse check me over, having my first GP appointment for ages, spending £1300 on having the car fixed (the old banger never cost me any money to fix!), painting, and more painting!
On Friday 20th I went off on my own to the opera. My Dad's Girlfriend who works there had sent him up with a ticket for me. It was the final rehersal for Elekra. I spent the first 20 minutes trying not to fall asleep - this was in no way a reflection on the performance, I was just exhausted and it was warm and dark and no-one was aking me to do anything. About half way through people started killing each other and the drama had me gripped till the end. When it was all over I had to stifle sobs of relief for the singers/actors. Luckily I managed - God knows how I'd stop if I really started to cry.
On Saturday morning we finished painting daughter 2's bedroom. Moved all the furniture out of the middle of the room into the hall and the carpet fitter came. I painted red nail varnish over the white paint on my nails, washed my hair and donned a mask. We were throwing a 60th birthday party for Mum in Kent. She was 60 in December when I was in the middle of my chemo and she decided to put it off to a happier time.
I wasn't the only one in a mask, everyone wore one and the effect was great fun. There were a perfect mix of people and the music was cheesey enough to keep me on the dancefloor for nearly 5 hours. The terrible mood I started the day with lifted and we all had a really lovely time.
Sixty Two
Wednesday,
4 September 2013
Sixty
Two - found!
I
have an unnatural, mainly unfounded, irrational and intense hate
(that's a strong word, perhaps 'mistrust' is better) for removals
companies. This is unlike me, I generally like giving people money to
do things for me better than I could do myself. This 'problem' has
undone us before and I'm sure it will again. Every time we move house
I swear I'm going to get someone else to do all the hard work and pay
them. They come to give quotes and the minute they walk through the
door I'm trying to get rid of them.
Perhaps
all the talk of how many boxes they think it will take, or how long,
freaks me out. Perhaps it's the reality of what we are about to
embark on. Maybe it's just the thought of a stranger touching all my
things? I don't know but I'm afraid I just couldn't get past it.
Again. I employed mytruck
driver, a man I have known since I was in my teens, a mixture between
friend and an uncle to me. Roped in My Dad, Brother and his
Girlfriend for the move and started to barter and beg for help
packing.
Packing
the house back into boxes was, apart from the annoyance of having to
actually do it, a very cleansing experience. We managed to syphon off
an enormous amount of things to go to the charity shop and the boot
fair. This means we have a very slightly smaller, enormous collection
of stuff. The hoarding has definitely passed from my Husband and me
straight to our daughters.
Mother
in Law absorbed the children as much as possible and the rest of the
time we sent them for play-dates and let them play on the laptop. The
dog got bored and unpacked some boxes and simply destroyed others by
chewing the corners off them. My Mum and my Dad's girlfriend packed
and sorted and folded. As the rooms piled up, the boxes kept coming.
As fast as they arrived – from the supermarket, from friends and
from the storage shop – we filled them.
On
Tuesday 20th
I had to take a break and head up to Guys for my dose of Herceptin. I
took Daughter number one with me for support and we had lunch in
Borough Market together before heading back. She spoke about her
fears of moving and how she felt about leaving our 'home' in Kent. I
listened and made the right Motherly comments whilst coming to a
strong realisation that I am more than thrilled to get out of the
house that holds such painful memories.
On
the Wednesday evening, whilst tackling the shoe mountain, I pulled
something in my left arm. It wasn't too painful, just a sharp twinge
but it gave me cause to stop and examine. On reflection, my arm felt
different and when I paused long enough to consider it I realised it
had been feeling different for some time. I had done an excellent job
of ignoring it. The pins and needles had started on and off in my
hand in Ireland and slowly but surely the arm had felt heavier.
I
pinched the skin around my elbows and unfortunately the left was not
the same as the right. I measured around my arm just above my elbow
and it was a good centimetre bigger than the right. My mind searched
back over what might have caused it. The puppies constant nips? Too
much driving? Had I hurt it putting the awning up? I emailed my
Breast Care Nurse and stopped lifting things.
On
Thursday I went back to London to have my arm looked at by my
surgeon. He agreed it was swollen and there was more fluid. I had my
arm scanned to see what the extent of the swelling was but would have
to go back in a week for a repeat. In the mean time, I was to treat
it as lyphadaema. The thing I've been trying so hard to avoid. I
promised to take extra care and do absolutely NO lifting.
Sixty One
Sixty
One
On
the first of August we woke up at 4.30am. Husband drove off to the
farm down the lane where we keep the caravan and brought it back. We
loaded into the car with the puppy in the back and off we went. It's
still a novelty for me to not have to drive everywhere and I'm happy
to say that I hardly drove at all during our two weeks away. We
sailed from Holyhead to Dublin and arrived at our friend's house in
time for tea.
The
next day we hitched up and headed for Slane. Our friends have set up
a Yurt Glamping site Hare's
leap
in the grounds of Slane
Castle.
A weekend party and camp-out had been arranged for her 40th.
We set up home and finally grappled with the awning for the first
time, doubling our space and delighting the children.
Friends
old and new continued to arrive for the next two days. By Friday
evening though, the party was already in full swing. My sister
arrived on Saturday and stayed for two nights. The children and the
dog ran wild. We swam in the river Boyne, walked the ancient land and
for one weekend I broke my resolve and drank champagne in the hot tub
under the stars. The weather was beautiful – cracking blue skies
peppered only occasionally with momentary downpours lasting a matter
of minutes.
Ireland
was it's usual welcoming self. Our caravan is small enough that we
arouse no suspicion of tinkers (a larger caravan may have had a
colder welcome). We were obviously just idiots abroad. On Monday the
last of the guests drifted home and dramatic news reached us from the
village. A masked robber had held up the bakers thinking it was the
bookies (his mask got in the way), made of with 10euros and was
caught by the Guards (police).
We
were invited to go home with our friends, he is a twin I've mentioned
before and his twin and their sister were with us plus Irish twin's
beautiful wife and a lovely selection of children. We weren't the
only guests to head home with them and we managed to hold on to the
spirit of the weekend for at least one more night.
We
finally hit the road on Wednesday and headed into the Wicklow
Mountains where we had been invited by new friends to stay on a
stunning Estate where they work. Their son and our daughter number
two had become great friends at the camp-out. We had a blissful
24hours eating lovely food prepared from the kitchen garden, swimming
in the pool, swimming in the river and enjoying great hospitality.
From
there we drove South to a village called Dunmore East. We spent two
days on the beach and on Saturday 10th
we caught the ferry from Roslaire to Fishguard. The drive from there
to Cornwall was brutal with the caravan on the back. The early start
to catch the ferry contributed to nearly 12 hours travelling. I drove
for one. At about 6pm we arrived at Atlantic View campsite near
Padstow where my sister and her family had set up camp and had a
delicious curry ready for us.
We
spent two days camping with them, surfing, walking, swimming, eating.
The children and the dog making new 'best friends' at every stop.
Then we stashed the caravan and moved into my Sister's house in
Boscastle for three nights. We caught up with friends, visited the
harbour, ate pasties, had a wonderful BBQ and swam in the sea some
more. The children caught up with their friends and by Thursday when
we collected the caravan and turned for home, we felt like we'd been
away for a lot longer than two weeks.
We
had one last hurrah, an evening in London, before the packing started
in earnest. It was a dinner party with very close friends in a
fabulous loft in Old Street. A birthday surprise. Everyone was
dressed up and the setting was perfect. A step back allowed an
amusing comparison to a modern, English version of 'Friends!'
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