I wonder if anyone noticed. I didn't notice until later on. My last blog entry was the first one not to mention Cancer. I think there were a few where I didn't write about my own illness but only because I was concentrating on Dad's. Well I'm afraid this one will, but only a bit.
The girls were meant to return to school on 3rd September. The eldest was just about well enough, although skinny and pale. The holiday had done her good, lots of fresh air, good food and fun. The younger one, however, wasn't well enough. Her temperature had gone up and we recognised the same symptoms the other one had suffered four weeks before.
I took her to the GP and after a week and several further visits, she got her chest Xray. They were more shocked than I was to find that she had pneumonia. We spent a couple of days in and out of Lewisham Hospital, a bit of a logistical nightmare while my Husband was working in Spain and then America. On the third day after she was diagnosed her joints started to swell up. Knees, hands, feet. Back in we went. We spent a whole night having tests, every test under the sun, to make sure they hadn't missed anything. Her blood test for glandular fever came back positive and her joint pain was attributed to Reactive Arthritis.
The Glandular fever diagnosis actually answered some of my questions. The paediatrician suggested that if Daughter number one had had it first, it would explain where both sets of pneumonia had come from. Another week's plans were cancelled.
Eventually she was well enough to return to school, although even now, in October, neither girl is 100% recovered.
On Wednesday 17th September I found a small lump on the edge of my right breast. It was just under the skin and next to the edge of the implant. It was sore and hot and a little red. I emailed my Breast Care Nurse. I didn't email my surgeon having got into trouble with him before. I had emailed a picture of the swelling under one breast thinking that it was a very clever way of explaining the problem. Apparently he opened his email while in a meeting and up popped a picture of my tit! Ooops.
My Breast Care Nurse finally got back to me with an appointment for a scan on the Monday. I appreciate that this is extremely quick and am in no way complaining, but it meant waiting the weekend before finding out what it was. As I have said before, I am inpatient. But it's not just that, the worry is very real. If I am diagnosed with secondary cancer, it will be considered to be terminal. I, of course, wouldn't take much notice of that and would hope to fight. These are the sort of thoughts that I can normally keep at bay but waiting for a scan on a lump can sure bring them to the surface.
That weekend I had the best distraction. Fifteen of us local Mums had rented a big house in Sussex for a weekend of fun, frolics and hilarity. There was an indoor pool, hot tub, dance floor (actually was the sitting room floor but made of wood and a huge room), pool table, tennis court, ping pong and masses of prosecco!
As I've mentioned before, I am trying to eliminate alcohol from my diet completely. It messes with your hormones which is something I cannot risk. But, I am only human and occasionally I break my own resolve. I broke it that weekend. It was great fun, so lovely to see my friend's personalities flourish in a new environment and not having to behave in front of our children! It was very annoying though, to have the nagging worry in the back of my mind.
Monday came and I went in for my scan. I spoke to my surgeon first and then had another appointment with him straight afterwards. My scan was clear. Both implants are fully intact and where they should be. The lump is a swollen internal stitch where the muscle joins onto the mesh hammock that holds the implant in place.
I left the hospital on my own and had to sit for a while in the park nearby. I choked back the tears as I let myself feel the relief wash over me. The alternative result is just too awful to imagine.
Thursday 9 October 2014
Tuesday 23 September 2014
Seventy One
I'm at home today. All day. Whilst Harry the boiler man rips my kitchen apart and attacks my ancient (not in a good, retro or vintage way just old and knackered) central heating system. There seems to be a lot of 'hitting things hard with a hammer' going on.
Daughter number one recovered quickly once she had the right antibiotics. She eased into her week at Theatre school in Tunbridge Wells with a couple of half days before managing to stay for the full stretch. The week culminated in the production of 'Wind in the Willows' in the Trinity Theatre on the Friday. My husband celebrated the day with a nasty skateboarding accident. I refused to spend another minute in the hospital there and dropped him at A&E. I couldn't leave fast enough.
I collected him hours later, just in time for the show, with a fractured wrist and a pair of crutches (a painful combination) Luckily the fractured bone was one of the little ones so he didn't need a cast. The show was fantastic and we were very proud parents.
On the 20th August we collected our caravan from Kent and headed to Shambala Festival. This wasn't a last minute thing. We had been looking forward to it all summer. We were working with our Glastonbury family. Work is 'Daemon or Doppleganger'. An art project set up by a close family friend ten years ago. She tours the summer festivals with a marquee and many tonnes of red potters clay.
Revellers are invited to create whatever takes their fancy out of a fist sized piece of clay. She collects them up at the end of the festival and carefully transports them home to Frome where they get fired over the winter. Only the strong survive the journey and the firing process. Over time she has built up a collection of 4+tonnes (she'll correct me if I've got this wrong) of little clay people. They are stored on site, in their own area, at Worthy Farm, Glastonbury.
The more impressive figures get taken on tour the following year and the rest are gathered to make a mini clay festival, complete with mini pyramid stage and little long-drop toilets, in Bella's field. It is truly lovely work. A shift consists of a couple of hours (depending on how many people there are to rotate) meeting people, telling them about the project, handing them clay and a board to work on and watching what they come up with.
People absolutely love it. It is free and there is no suggested time limit. There are no boundary's and no guidelines. I've met people who have come back year after year to make another model. At the end of each day the artists can come back and collect their work to take home if they'd rather. It's a joyous way to spend a couple of hours a day and it comes with significant perks. At Shambala we were camped behind the Marquee in the craft area. Slap bang in the middle of the calm part of the festival. In our caravan, with our friends. It makes the whole experience do-able with kids and even boarders on Luxurious which is not something you'd normally associate with UK summer music festivals.
On the Saturday evening, after we'd closed the front of the marquee (work finishes at 6pm), we set up a table and chairs, table cloths, candles and fairy lights and had a dinner party for My eldest daughter's tenth birthday. My Brother and his lady were there too and it was such a lovely meal. Shambala festival is very beautiful. Small but big enough to be fun. Plenty of kids but lots of attractions for the grown ups after dark. Our girls enjoyed a little bit of freedom and were allowed to explore together for pre-agreed periods of time.
On Monday 25th we took down the Marquee and packed up the caravan (in the rain - not so luxurious!) and drove to Dover where we stayed overnight in a sweet campsite, Did our washing, scrubbed the kids, cleaned the caravan and regrouped. On Tuesday morning we set sail for five days in France.
We were supposed to be heading for Cornwall to spend time with Footsbarn who spent the summer touring the UK, but at the last minute had been called away by the never ending saga of sorting out My Dad's legacy. His hate for paperwork will continue to haunt me for years and it's trail reaches far and wide!
We camped beside the river in Herisson. A stunning medieval village in the centre of France. The weather was gorgeous. We caught up with many friends (Footsbarn are based there so we have a long-term connection with the area). It was a short, sweet break and we were sad to head home again.
Daughter number one recovered quickly once she had the right antibiotics. She eased into her week at Theatre school in Tunbridge Wells with a couple of half days before managing to stay for the full stretch. The week culminated in the production of 'Wind in the Willows' in the Trinity Theatre on the Friday. My husband celebrated the day with a nasty skateboarding accident. I refused to spend another minute in the hospital there and dropped him at A&E. I couldn't leave fast enough.
I collected him hours later, just in time for the show, with a fractured wrist and a pair of crutches (a painful combination) Luckily the fractured bone was one of the little ones so he didn't need a cast. The show was fantastic and we were very proud parents.
On the 20th August we collected our caravan from Kent and headed to Shambala Festival. This wasn't a last minute thing. We had been looking forward to it all summer. We were working with our Glastonbury family. Work is 'Daemon or Doppleganger'. An art project set up by a close family friend ten years ago. She tours the summer festivals with a marquee and many tonnes of red potters clay.
Revellers are invited to create whatever takes their fancy out of a fist sized piece of clay. She collects them up at the end of the festival and carefully transports them home to Frome where they get fired over the winter. Only the strong survive the journey and the firing process. Over time she has built up a collection of 4+tonnes (she'll correct me if I've got this wrong) of little clay people. They are stored on site, in their own area, at Worthy Farm, Glastonbury.
The more impressive figures get taken on tour the following year and the rest are gathered to make a mini clay festival, complete with mini pyramid stage and little long-drop toilets, in Bella's field. It is truly lovely work. A shift consists of a couple of hours (depending on how many people there are to rotate) meeting people, telling them about the project, handing them clay and a board to work on and watching what they come up with.
People absolutely love it. It is free and there is no suggested time limit. There are no boundary's and no guidelines. I've met people who have come back year after year to make another model. At the end of each day the artists can come back and collect their work to take home if they'd rather. It's a joyous way to spend a couple of hours a day and it comes with significant perks. At Shambala we were camped behind the Marquee in the craft area. Slap bang in the middle of the calm part of the festival. In our caravan, with our friends. It makes the whole experience do-able with kids and even boarders on Luxurious which is not something you'd normally associate with UK summer music festivals.
On the Saturday evening, after we'd closed the front of the marquee (work finishes at 6pm), we set up a table and chairs, table cloths, candles and fairy lights and had a dinner party for My eldest daughter's tenth birthday. My Brother and his lady were there too and it was such a lovely meal. Shambala festival is very beautiful. Small but big enough to be fun. Plenty of kids but lots of attractions for the grown ups after dark. Our girls enjoyed a little bit of freedom and were allowed to explore together for pre-agreed periods of time.
On Monday 25th we took down the Marquee and packed up the caravan (in the rain - not so luxurious!) and drove to Dover where we stayed overnight in a sweet campsite, Did our washing, scrubbed the kids, cleaned the caravan and regrouped. On Tuesday morning we set sail for five days in France.
We were supposed to be heading for Cornwall to spend time with Footsbarn who spent the summer touring the UK, but at the last minute had been called away by the never ending saga of sorting out My Dad's legacy. His hate for paperwork will continue to haunt me for years and it's trail reaches far and wide!
We camped beside the river in Herisson. A stunning medieval village in the centre of France. The weather was gorgeous. We caught up with many friends (Footsbarn are based there so we have a long-term connection with the area). It was a short, sweet break and we were sad to head home again.
Thursday 11 September 2014
Seventy
So much has happened. I'm overwhelmed by my own news! What a wonderful position to be in. I often wonder if I'm bored, or if I lead a boring life but faced with the job of writing down all that's been going on in the last couple of months I realise I'm actually quite active!
Glastonbury was a blast. The kids were suitably surprised and excited. My sister and her family went and we all camped in the crew camping area with our Glastonbury family. A circle of eight caravans around lush green grass with tables and chairs and toys for all the kids. A lovely camping holiday in the middle of the biggest festival in the world!
The girls spent 5 days in utter wonderment. They quickly adapted their outfits to suit the festival style and requested ever more elaborate glitterwork and dresses under waterproofs. We caught some of their idols, Lana Del Rey, Lily Allen and Ellie Goulding and also managed to drag them to see bands we were more interested in too.
We all talked about Dad a lot, last year's Glastonbury with him being so fresh in our minds, reminders of him were everywhere.
I worked very hard not to become exhausted. At times annoyed by my own limitations but in some ways finding it easier having the girls there to match myself to. Having said that, the security of such a tight family camp gave us the opportunity to put the girls to bed and venture out again into the night.
We arrived home on the Monday night, had a good sleep and went straight into hospital on Tuesday morning.
My mastectomy and reconstruction went well. I had both breasts rebuilt using implants and internal scar tissue under my left arm reduced. I had a steady stream of visitors and was back out in record time (2 or 3 days I think). Unfortunately due to the complexity of the operation I had to carry around not one but three drains (blood bottles!) for the next couple of weeks.
I spent about two weeks in the house recovering but felt better so much more quickly than I had after my first mastectomy. I can only assume this is because I am not ill this time. I had to visit the hospital almost daily so they could keep an eye on the drains and the healing process. Doing this from home was so much easier than from Kent.
On the 18th July we went to Hythe to spend a couple of days beside the sea, a generous gift from My Husband's aunt. We visited family and friends whilst there and I watched in envy as my family swam in the sea.
The week of the 21st July I was feeling much better. Still not allowed to drive/swim/exercise but getting around well and in much less pain. at the end of the week we were offered last minute tickets to The Secret Garden Party. A smaller music festival in Cambridgeshire. My Sister's fella was playing there with his band and had some un-allocated artists passes.
I went to hospital on Friday morning for a check up and asked my surgeon what he thought about me gallivanting off to a festival for the weekend during my recovery period. He said that my recent surgery was supposed to be enriching my life, not holding me back and that I should go for it but be sensible.
We threw the kids and the tent in the car and off we went!
August came quickly and the children were off school I was surprised to be well enough to do most things with them. I hadn't booked anything in for the first few weeks, Imagining that I would be stuck at home recovering. I amazed myself and was able to keep up with the girls.
Having them at home with me gave me the distraction I needed to help me lift myself from the depression that had begun to set in. I don't really feel able to write about it but had been very low. I am still struggling with this but I am very much better than I had been for a few months.
We decided on a whim to get the train to Exmouth to stay with my Granny. A plan that backfired when Daughter number one developed pnuemonia, finally ending up in Hospital on IV antibiotics. Ironically we had returned from Devon to My Mother-in-law's in Kent when she was finally diagnosed (after multiple trips to the doctors). I spent another night in my (not) favourite hospital where I have spent so much time over the past couple of years first myself and then with Dad. This time they did a good job and after 24 hours she was allowed home, well on the road to recovery.
Glastonbury
Secret Garden Party
Glastonbury was a blast. The kids were suitably surprised and excited. My sister and her family went and we all camped in the crew camping area with our Glastonbury family. A circle of eight caravans around lush green grass with tables and chairs and toys for all the kids. A lovely camping holiday in the middle of the biggest festival in the world!
The girls spent 5 days in utter wonderment. They quickly adapted their outfits to suit the festival style and requested ever more elaborate glitterwork and dresses under waterproofs. We caught some of their idols, Lana Del Rey, Lily Allen and Ellie Goulding and also managed to drag them to see bands we were more interested in too.
We all talked about Dad a lot, last year's Glastonbury with him being so fresh in our minds, reminders of him were everywhere.
I worked very hard not to become exhausted. At times annoyed by my own limitations but in some ways finding it easier having the girls there to match myself to. Having said that, the security of such a tight family camp gave us the opportunity to put the girls to bed and venture out again into the night.
We arrived home on the Monday night, had a good sleep and went straight into hospital on Tuesday morning.
My mastectomy and reconstruction went well. I had both breasts rebuilt using implants and internal scar tissue under my left arm reduced. I had a steady stream of visitors and was back out in record time (2 or 3 days I think). Unfortunately due to the complexity of the operation I had to carry around not one but three drains (blood bottles!) for the next couple of weeks.
I spent about two weeks in the house recovering but felt better so much more quickly than I had after my first mastectomy. I can only assume this is because I am not ill this time. I had to visit the hospital almost daily so they could keep an eye on the drains and the healing process. Doing this from home was so much easier than from Kent.
On the 18th July we went to Hythe to spend a couple of days beside the sea, a generous gift from My Husband's aunt. We visited family and friends whilst there and I watched in envy as my family swam in the sea.
The week of the 21st July I was feeling much better. Still not allowed to drive/swim/exercise but getting around well and in much less pain. at the end of the week we were offered last minute tickets to The Secret Garden Party. A smaller music festival in Cambridgeshire. My Sister's fella was playing there with his band and had some un-allocated artists passes.
I went to hospital on Friday morning for a check up and asked my surgeon what he thought about me gallivanting off to a festival for the weekend during my recovery period. He said that my recent surgery was supposed to be enriching my life, not holding me back and that I should go for it but be sensible.
We threw the kids and the tent in the car and off we went!
August came quickly and the children were off school I was surprised to be well enough to do most things with them. I hadn't booked anything in for the first few weeks, Imagining that I would be stuck at home recovering. I amazed myself and was able to keep up with the girls.
Having them at home with me gave me the distraction I needed to help me lift myself from the depression that had begun to set in. I don't really feel able to write about it but had been very low. I am still struggling with this but I am very much better than I had been for a few months.
We decided on a whim to get the train to Exmouth to stay with my Granny. A plan that backfired when Daughter number one developed pnuemonia, finally ending up in Hospital on IV antibiotics. Ironically we had returned from Devon to My Mother-in-law's in Kent when she was finally diagnosed (after multiple trips to the doctors). I spent another night in my (not) favourite hospital where I have spent so much time over the past couple of years first myself and then with Dad. This time they did a good job and after 24 hours she was allowed home, well on the road to recovery.
Glastonbury
Secret Garden Party
Wednesday 18 June 2014
Sixty Nine
So today I am stuck on the sofa with my foot in the air! A bit of enforced
rest is actually a good thing for me. I am making the most of it and writing
lists, internet shopping and making plans. It started two days ago, my left
foot felt stiff and crampy all day. I put it down to my new sandals (I still
think they might have been the culprit) but they are from Clarks and are very
comfortable...
Anyway, when I woke up yesterday morning I could hardly walk. The base or sole of my foot is swollen and it feels like walking on a painful cushion. The ligaments up the middle of the underneath of my foot are really tender and the top of my foot looks strange too, like the skin is tight.
I went to the Doctor to make sure there was no infection. She thought it looked like a bad sprain and gave me Ibuprofen gel to put on it. I'm also to keep an eye on my temperature and had to have a blood test for good measure. I'm surprised I have any blood left after the last few weeks!
On Monday 9th I went to the breast clinic at Guys to have a planning meeting with my surgeon. All was going well until I mentioned my recent dramas with the white blood cells. He immediately closed my file; looked at me and said that he didn’t think he could go ahead. He thought I would be too much at risk of infection.
I understand the risk and would never push for an operation if there was a risk but at the same time felt very upset and annoyed. If not now, then when? It's taken over a year for my bloods to recover half a point, how long until they are normal?? My surgeon emailed the oncologists and haematologists for advice. I'd have to wait and see.
So I felt pretty let down by my body again. This is something I struggle with constantly. I have looked after myself and made massive sacrifices in the name of health and it doesn’t seem fair that I continue to not be well enough to do things. On the other hand I suppose I'm lucky to be alive and have to keep reminding myself that.
On Tuesday I found out that there was a problem with our remortgage because of a late payment last September. This had endless knock on effects that we had never even considered (not that we meant the payment to be late).
On Wednesday I spent the whole day in Hospital having my pre-op assessment. I'd been told to go ahead even though there was little chance of actually having the operation. It felt like a waste of time and energy.
By Thursday I was rock bottom, struggling with banks, missing Dad terribly, hating my useless body. Wanting to get disgustingly drunk! I had a depressing session with my counsellor which didn’t much help. Then I had a brilliant session with my Personal Trainer which did help. I am finally getting noticeably stronger (ignore my blood count).
On Saturday night we went to a friend's house to watch the Football and the host and I amused ourselves greatly with a silly joke about Italian food. I think we drove the other guests mad but I laughed so hard I couldn’t breathe. That's the first time that's happened in over two years and it felt good.
So far this week the school have authorised at least one of the children's upcoming absences (more about that in a minute), the mortgage application is progressing and I've been told that I will be going ahead with surgery on the 2nd. If it wasn’t for my foot, I'd be having a very good week!
So, back to the girls. Next week is Glastonbury; you know how important that is to me. This year we have decided to take the girls for the first time. This is a secret (they don't know yet). It has added a whole new level of organisation, packing and preparation but it's also added a new level of excitement.
We are going on Wednesday and will be back in London on Tuesday 1st, just in time for my operation on the 2nd! Needless to say, for one reason or another I will be having a very well behaved festival!!
Anyway, when I woke up yesterday morning I could hardly walk. The base or sole of my foot is swollen and it feels like walking on a painful cushion. The ligaments up the middle of the underneath of my foot are really tender and the top of my foot looks strange too, like the skin is tight.
I went to the Doctor to make sure there was no infection. She thought it looked like a bad sprain and gave me Ibuprofen gel to put on it. I'm also to keep an eye on my temperature and had to have a blood test for good measure. I'm surprised I have any blood left after the last few weeks!
On Monday 9th I went to the breast clinic at Guys to have a planning meeting with my surgeon. All was going well until I mentioned my recent dramas with the white blood cells. He immediately closed my file; looked at me and said that he didn’t think he could go ahead. He thought I would be too much at risk of infection.
I understand the risk and would never push for an operation if there was a risk but at the same time felt very upset and annoyed. If not now, then when? It's taken over a year for my bloods to recover half a point, how long until they are normal?? My surgeon emailed the oncologists and haematologists for advice. I'd have to wait and see.
So I felt pretty let down by my body again. This is something I struggle with constantly. I have looked after myself and made massive sacrifices in the name of health and it doesn’t seem fair that I continue to not be well enough to do things. On the other hand I suppose I'm lucky to be alive and have to keep reminding myself that.
On Tuesday I found out that there was a problem with our remortgage because of a late payment last September. This had endless knock on effects that we had never even considered (not that we meant the payment to be late).
On Wednesday I spent the whole day in Hospital having my pre-op assessment. I'd been told to go ahead even though there was little chance of actually having the operation. It felt like a waste of time and energy.
By Thursday I was rock bottom, struggling with banks, missing Dad terribly, hating my useless body. Wanting to get disgustingly drunk! I had a depressing session with my counsellor which didn’t much help. Then I had a brilliant session with my Personal Trainer which did help. I am finally getting noticeably stronger (ignore my blood count).
On Saturday night we went to a friend's house to watch the Football and the host and I amused ourselves greatly with a silly joke about Italian food. I think we drove the other guests mad but I laughed so hard I couldn’t breathe. That's the first time that's happened in over two years and it felt good.
So far this week the school have authorised at least one of the children's upcoming absences (more about that in a minute), the mortgage application is progressing and I've been told that I will be going ahead with surgery on the 2nd. If it wasn’t for my foot, I'd be having a very good week!
So, back to the girls. Next week is Glastonbury; you know how important that is to me. This year we have decided to take the girls for the first time. This is a secret (they don't know yet). It has added a whole new level of organisation, packing and preparation but it's also added a new level of excitement.
We are going on Wednesday and will be back in London on Tuesday 1st, just in time for my operation on the 2nd! Needless to say, for one reason or another I will be having a very well behaved festival!!
Tuesday 3 June 2014
A bit of bloggy housekeeping.
I'm not sure If I'll carry on announcing new entries on Facebook. If you are a reader of my blog, I think you should 'follow' it so you get an email to tell you when I've updated....(does this even happen? - perhaps you could let me know if you are a 'follower' whether it lets you know when I post??)
Sixty Eight
My Oncology appointment came through on Wednesday 28th May. Slap bang in the middle of half term. I didn't want the kids to come and the car had broken down on the Tuesday so they went to Kent on the train with my Husband who just happened to be working in Tunbridge Wells for the evening.
I have realised that I feel extremely at home at Guys. And safe. Unfortunately the same can't be said for the hospital in Pembury who tried to kill me and then later diagnosed Dad. So it's not a hospital thing, maybe just a London hospital thing. Anyway, I felt safe on Wednesday when I went in.
It's been a while since I've had to sit in the big cancer waiting room and it still astounds me how many people there are who are suffering from this terrible illness. It doesn't matter how many times we are told that one in three of us will get cancer, it takes actually going to that waiting room to really drive the reality home, and that's just one waiting room, in one hospital, on one day, in one town......
My Husband joined me. I was weighed and booked in and finally called by the Oncologist. The outcome is very positive. We looked back over all the blood test results since my chemo stopped. The Hospital have a lot more results than my GP and could get a much clearer picture. My White Blood Cells (WBC) have been consistently low. In fact, if anything they are (very, very slightly) higher than they were in October or January.
This, however strange it sounds, is fantastic news. It means there has been no sudden drop. It also means that I have been coping well considering and may even start to feel a bit better as and when they rise. The Oncologist will pass my results to a Haematologist and ask for advice. It is not usual for the blood count to still look this weak so long after chemo and she wants to know if there's anything I should be taking to boost them.
So, it doesn't look like it's a side effect of the Tamoxifen which is great as I'm prescribed another nine years of it and it is a wonderful drug in prevention of return of breast cancer. And most importantly, it is not an indication of cancer in my bones or blood.
I had a call from Guys yesterday, my blood test result from Wednesday is back and there is little change. This reinforces everything I was told.
So, looking forward. I have been booked in on the 2nd July for some major surgery. I am having a full mastectomy on the right. This is preventative. I asked to have both breasts removed when I was diagnosed but due to the aggressiveness of the cancer and the fact that it had already spread I was rushed into the first available surgery slot which was only four hours, not long enough for both breasts.
I will have full reconstruction on the right and a new reconstruction on the left. The implant on the left has been damaged by the radiotherapy and will be replaced. The operation will take about eight hours. I've been waiting for this for nearly two years. Keeping my right breast felt like a ticking time bomb. I had to wait a year for the internal scarring from the radiotherapy to be sufficiently healed before they could go ahead.
Now that the operation is so close I am scared. I know that it is a bigger operation than last time and having experienced that pain once and the prolonged recovery, I am once bitten twice shy. I am a less strong person these days. I can't imagine how I got through the process of diagnosis and treatment. I realise now how important it was to me to have my Dad there by my side through the whole experience.
I have also had a year of relative good health which has made the thought of amputating perfectly healthy tissue seem crazy. Plus it's my breast, my only remaining breast. However good the surgeons can make the reconstruction look, it's still just a lump of plastic stuck on your front.
But, first and foremost I am a Mother. I must do everything I can to protect myself from illness for my children's sake and if removing my right breast removes any risk at all, no matter how small, I will do it. So, the date is set. I am getting fit and strong in preparation. I am looking to the future with hope. I am keeping a healthy diet and keeping up my abstinence from booze (for the most part) and I am trying really hard to be, think, stay and feel positive!
Remind me next time to tell you about the fire we had in the kitchen!!!!
I have realised that I feel extremely at home at Guys. And safe. Unfortunately the same can't be said for the hospital in Pembury who tried to kill me and then later diagnosed Dad. So it's not a hospital thing, maybe just a London hospital thing. Anyway, I felt safe on Wednesday when I went in.
It's been a while since I've had to sit in the big cancer waiting room and it still astounds me how many people there are who are suffering from this terrible illness. It doesn't matter how many times we are told that one in three of us will get cancer, it takes actually going to that waiting room to really drive the reality home, and that's just one waiting room, in one hospital, on one day, in one town......
My Husband joined me. I was weighed and booked in and finally called by the Oncologist. The outcome is very positive. We looked back over all the blood test results since my chemo stopped. The Hospital have a lot more results than my GP and could get a much clearer picture. My White Blood Cells (WBC) have been consistently low. In fact, if anything they are (very, very slightly) higher than they were in October or January.
This, however strange it sounds, is fantastic news. It means there has been no sudden drop. It also means that I have been coping well considering and may even start to feel a bit better as and when they rise. The Oncologist will pass my results to a Haematologist and ask for advice. It is not usual for the blood count to still look this weak so long after chemo and she wants to know if there's anything I should be taking to boost them.
So, it doesn't look like it's a side effect of the Tamoxifen which is great as I'm prescribed another nine years of it and it is a wonderful drug in prevention of return of breast cancer. And most importantly, it is not an indication of cancer in my bones or blood.
I had a call from Guys yesterday, my blood test result from Wednesday is back and there is little change. This reinforces everything I was told.
So, looking forward. I have been booked in on the 2nd July for some major surgery. I am having a full mastectomy on the right. This is preventative. I asked to have both breasts removed when I was diagnosed but due to the aggressiveness of the cancer and the fact that it had already spread I was rushed into the first available surgery slot which was only four hours, not long enough for both breasts.
I will have full reconstruction on the right and a new reconstruction on the left. The implant on the left has been damaged by the radiotherapy and will be replaced. The operation will take about eight hours. I've been waiting for this for nearly two years. Keeping my right breast felt like a ticking time bomb. I had to wait a year for the internal scarring from the radiotherapy to be sufficiently healed before they could go ahead.
Now that the operation is so close I am scared. I know that it is a bigger operation than last time and having experienced that pain once and the prolonged recovery, I am once bitten twice shy. I am a less strong person these days. I can't imagine how I got through the process of diagnosis and treatment. I realise now how important it was to me to have my Dad there by my side through the whole experience.
I have also had a year of relative good health which has made the thought of amputating perfectly healthy tissue seem crazy. Plus it's my breast, my only remaining breast. However good the surgeons can make the reconstruction look, it's still just a lump of plastic stuck on your front.
But, first and foremost I am a Mother. I must do everything I can to protect myself from illness for my children's sake and if removing my right breast removes any risk at all, no matter how small, I will do it. So, the date is set. I am getting fit and strong in preparation. I am looking to the future with hope. I am keeping a healthy diet and keeping up my abstinence from booze (for the most part) and I am trying really hard to be, think, stay and feel positive!
Remind me next time to tell you about the fire we had in the kitchen!!!!
Thursday 22 May 2014
Sixty Seven
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!)
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!)
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