My brother in law and me had planned to go to Torquay today. This morning I decided it would be nice to take Abbie (3) with us. We all had a lovely time having lunch then going on the Torquay Big Wheel.
There was one moment where I feared the big wheel decision could be a major error, as we began the climb and Abbie was not only holding on to me for dear life, she was also crying.
However, inspired by the sudden glimpse of living coasts I mentioned the magic word "penguins" and even though you can't actually see them, the existence of the big nets and the knowledge that they were there somewhere seemed to suffice and she thankfully stopped crying and managed to actually look out of the window for the rest of the ride.
Then we pottered around at the beach before heading back to the car whilst wondering why we hadn't parked somewhere a bit more central...
I have foolishly managed to catch the sun on my neck. I would bang on about skin being more sensitive whilst having chemotherapy but who am I kidding, anyone who has ever been on holiday with me knows I am a vampire who should never venture out in the sun.
I have stuck aloe vera moisturiser on it and I am hoping it is gone by the morning. Someone whose choices of top half attire are limited enough as it is does not want to be having to worry about covering the back of their neck as well.
<zips up Superdry hoodie. Puts up hood for good measure>
Saturday 29 June 2013
Friday 28 June 2013
Hair, mainly
So one week on from first chemo and port insertion. The port site is starting to be less swollen and this is the first day that I have not been constantly able to "feel" the tube whenever I move my arm.
It's a strange feeling as I can't say it's painful but equally it's not something I would have wanted to put up with for the duration of the time that the port is in place. Fingers crossed this is the start of an improvement and that it will become less and less noticeable.
This is the first day for ages that I haven't (yet - it's only 8.30pm!) taken any tablets, not even painkillers.
I have a sore mouth, a similar sensation to having burnt your tongue, but all over my tongue. Using the mouthwash provided and hoping that this side effect plateaus rather than worsens.
Today I made an appointment with my hairdresser to see her on Monday and have my head shaved. She will also have a look at the two wigs I got yesterday and give them a bit of a cut if needed. At the wig place I also acquired what I would describe as a "Hilda Ogden style" pull on turban. This is a flannel affair not unlike those post hair washing towel turbans that exist. Methinks that item will be reserved for at home and specifically night times if I start to get cold. I can't quite see me wearing it out in public!
I did have some luck with trying out the one scarf that I possess (Primark, £4...) literally tying it around my head like a ponytail. Little bit miffed to discover that it actually looked better than my existing ponytail which still has shorter greyer bits sticking up uncontrollably like a halo from where my hair at the front fell out after pregnancy and has started to grow back.
Anyway going back to the head shaving - at the suggestion of my friend we sent a message round inviting donations from my work colleagues as sponsorship for that event. I was in two minds about this as I thought it might represent the final step towards becoming the ultimate cancer cliche. (Blog - check, sponsored head shave - check, becoming catatonic during any conversation lasting longer than 15 minutes - oh, that's just me, then...?).
But I will take that risk because it means that next time I go for chemo I can hopefully go along to the Ricky Grant Unit - my chosen cause - clutching a nice little donation cheque made payable to them.
It's a strange feeling as I can't say it's painful but equally it's not something I would have wanted to put up with for the duration of the time that the port is in place. Fingers crossed this is the start of an improvement and that it will become less and less noticeable.
This is the first day for ages that I haven't (yet - it's only 8.30pm!) taken any tablets, not even painkillers.
I have a sore mouth, a similar sensation to having burnt your tongue, but all over my tongue. Using the mouthwash provided and hoping that this side effect plateaus rather than worsens.
Today I made an appointment with my hairdresser to see her on Monday and have my head shaved. She will also have a look at the two wigs I got yesterday and give them a bit of a cut if needed. At the wig place I also acquired what I would describe as a "Hilda Ogden style" pull on turban. This is a flannel affair not unlike those post hair washing towel turbans that exist. Methinks that item will be reserved for at home and specifically night times if I start to get cold. I can't quite see me wearing it out in public!
I did have some luck with trying out the one scarf that I possess (Primark, £4...) literally tying it around my head like a ponytail. Little bit miffed to discover that it actually looked better than my existing ponytail which still has shorter greyer bits sticking up uncontrollably like a halo from where my hair at the front fell out after pregnancy and has started to grow back.
Anyway going back to the head shaving - at the suggestion of my friend we sent a message round inviting donations from my work colleagues as sponsorship for that event. I was in two minds about this as I thought it might represent the final step towards becoming the ultimate cancer cliche. (Blog - check, sponsored head shave - check, becoming catatonic during any conversation lasting longer than 15 minutes - oh, that's just me, then...?).
But I will take that risk because it means that next time I go for chemo I can hopefully go along to the Ricky Grant Unit - my chosen cause - clutching a nice little donation cheque made payable to them.
Thursday 27 June 2013
Having cancer = full time job
Had a lovely night at my sister's house last night. Have fed all the animals, then washed my hands several times...
Had to start a new food bowl for the rabbit and chuck it in the "bed" side of the cage as the rabbit was looking at me menacingly from the main part of the cage and I was afraid to open that door in case she came out.
The only pet we have at home is one very moulting and very noisy cat. She got used to being my baby for 7 years before children arrived and has been impossible to handle ever since. She is called Tizzy but I have only recently reverted to addressing her by that moniker after suddenly noticing that Abbie had started in all seriousness addressing her as "Bleddy Cat" instead. No idea where she could possibly have got that from... Pre-schoolers, eh?! :-S
Today my mum is taking me to Exeter to try on wigs. These illness related appointments never end! Not a great shopper at the best of times, I am not exactly looking forward to it but I am however attracted by the fact that all potential decisions are confined in one building. I have always hated this idea of "let's see what is in the other shops before we decide". No. Let's just buy what I've just tried on then spend the rest of the allocated shopping day doing something fun like eating stuff and stopping for coffee.
Had to start a new food bowl for the rabbit and chuck it in the "bed" side of the cage as the rabbit was looking at me menacingly from the main part of the cage and I was afraid to open that door in case she came out.
The only pet we have at home is one very moulting and very noisy cat. She got used to being my baby for 7 years before children arrived and has been impossible to handle ever since. She is called Tizzy but I have only recently reverted to addressing her by that moniker after suddenly noticing that Abbie had started in all seriousness addressing her as "Bleddy Cat" instead. No idea where she could possibly have got that from... Pre-schoolers, eh?! :-S
Today my mum is taking me to Exeter to try on wigs. These illness related appointments never end! Not a great shopper at the best of times, I am not exactly looking forward to it but I am however attracted by the fact that all potential decisions are confined in one building. I have always hated this idea of "let's see what is in the other shops before we decide". No. Let's just buy what I've just tried on then spend the rest of the allocated shopping day doing something fun like eating stuff and stopping for coffee.
Wednesday 26 June 2013
Quiet Time
My sister and her hubby have let me have a key to their house whilst they are away. I have decided to go there tonight for some sort of "me time" retreat affair. Little bit worried that I might find dead rodents all around the place that their cats will have been proudly bringing in to greet them on their return home - I shall of course be packing my Dettol and anti bac wipes...
I am looking forward to this quiet time. If you live on your own and you are off work due to illness then I imagine it is possible to find yourself rattling around the house and having rather too much of that sort of time on your hands.
Not so here. By way of example, after having my first child and moving house shortly afterwards, around three months after moving to said newly purchased house my husband happened to take the baby out for a drive one Sunday morning. Whilst they were gone I suddenly realised that this was in fact the first moment I had ever spent in my new house entirely ON MY OWN. Oh, the possibilities stretching out before me! Like a responsible wife and mother I used this time to tidy up. Wouldn't bother if I had that time again. I would have put on a DVD and had a nice lie down.
So that's exactly what I will be doing these next two days at Helen's house thank you very much :)
I am looking forward to this quiet time. If you live on your own and you are off work due to illness then I imagine it is possible to find yourself rattling around the house and having rather too much of that sort of time on your hands.
Not so here. By way of example, after having my first child and moving house shortly afterwards, around three months after moving to said newly purchased house my husband happened to take the baby out for a drive one Sunday morning. Whilst they were gone I suddenly realised that this was in fact the first moment I had ever spent in my new house entirely ON MY OWN. Oh, the possibilities stretching out before me! Like a responsible wife and mother I used this time to tidy up. Wouldn't bother if I had that time again. I would have put on a DVD and had a nice lie down.
So that's exactly what I will be doing these next two days at Helen's house thank you very much :)
Tuesday 25 June 2013
Infection Minefield
In theory and all being well (insert appropriate caveat here) I will not be going back to hospital until 4th July.
The nurse was happy with the appearance of my new port and said there was no need to disturb it again at this stage. Thanks to my auntie and cousin for taking me to that appointment and agreeing with me that Costa taking over the hospital cafe has produced a ridiculous state of affairs.
Well one would think that the world is now my oyster with all this time on my hands but no, as I now enter the peak time for catching a serious infection. 5 to 15 days after chemo, if you're interested. Obviously one could catch an infection at any time but it is during this period that my white blood cells are likely to be too damaged or indeed, too non existent, to fight it efficiently.
Still not back to full functioning in relation to lifting etc after my main op either and that remains a no-no following insertion of the port. I did manage to tidy up (and Dettol!) the kitchen yesterday plus cook the dinner all by myself without needing to lie down halfway through.
I have a file waiting for me downstairs from work which inspired me to have it sent home to me to deal with as it included the prospect of a nice "discussion" about the other side's inflated legal costs. I will have Dad and Maggie here helping me today and Abbie is off to pre school this afternoon so you never know, I may even get some work done!
The nurse was happy with the appearance of my new port and said there was no need to disturb it again at this stage. Thanks to my auntie and cousin for taking me to that appointment and agreeing with me that Costa taking over the hospital cafe has produced a ridiculous state of affairs.
Well one would think that the world is now my oyster with all this time on my hands but no, as I now enter the peak time for catching a serious infection. 5 to 15 days after chemo, if you're interested. Obviously one could catch an infection at any time but it is during this period that my white blood cells are likely to be too damaged or indeed, too non existent, to fight it efficiently.
Still not back to full functioning in relation to lifting etc after my main op either and that remains a no-no following insertion of the port. I did manage to tidy up (and Dettol!) the kitchen yesterday plus cook the dinner all by myself without needing to lie down halfway through.
I have a file waiting for me downstairs from work which inspired me to have it sent home to me to deal with as it included the prospect of a nice "discussion" about the other side's inflated legal costs. I will have Dad and Maggie here helping me today and Abbie is off to pre school this afternoon so you never know, I may even get some work done!
Monday 24 June 2013
In which I attend my fifth hospital appointment in the past six days
Guess where I am going today?
Yes that's right, the hospital! I have been there on five out of the last six days. Sunday appears to be a day off. Unless of course I contract an infection in which case they and the IV antibiotics will be more than happy to welcome me then, too.
Today I am having my new Port checked and flushed through to make sure it has settled in ok. It's not hurting as much as it was before and the swelling seems to be going down as well. Bit apprehensive about what the "access" to the port will involve. Remember this is under the skin. Something therefore has to be punctured to get back in to it. For me, this still seems preferable to anyone taking dreaded needles to my arms.
I have always been a massive wimp about arm injections. When I was meant to have my BCG at school aged around 14 I was thrilled that our family holiday to Florida clashed with the injection schedule. I am sure they would have arranged an alternative date for me but nobody said anything, so neither did I!
I did not end up having my BCG until I was 21 years old. I arranged this after reading (probably in the Daily Mail or somewhere) that TB cases in the UK were on the up. I had to attend the Heart and Lung clinic at the actual hospital for it. At least being out of school I was no longer at risk of being punched on the arm after having it, given that we were led to believe at school that doing this to someone after the injection might cause their arm to fall off or something equally catastrophic.
Then there was the occasion where I saw the Practice Nurse for a routine appointment and whilst there she saw on the computer that my tetanus booster was due. She suggested doing it there and then! Erm, no love, this sort of thing requires weeks of mental preparation and anyway I'll take my chances with tetanus so don't worry about booking me in...
I had obviously improved somewhat by the time pregnancy occurred as with my second baby when the midwife mentioned that I should have the flu injection I responsibly went out to reception to make the appointment. The nice lady said they had a cancellation at 4.30 pm. THAT DAY. I had to abandon my usual policy of mental preparation (AKA delay and avoidance) and I went and had the injection. The things we do for our children!
Yes that's right, the hospital! I have been there on five out of the last six days. Sunday appears to be a day off. Unless of course I contract an infection in which case they and the IV antibiotics will be more than happy to welcome me then, too.
Today I am having my new Port checked and flushed through to make sure it has settled in ok. It's not hurting as much as it was before and the swelling seems to be going down as well. Bit apprehensive about what the "access" to the port will involve. Remember this is under the skin. Something therefore has to be punctured to get back in to it. For me, this still seems preferable to anyone taking dreaded needles to my arms.
I have always been a massive wimp about arm injections. When I was meant to have my BCG at school aged around 14 I was thrilled that our family holiday to Florida clashed with the injection schedule. I am sure they would have arranged an alternative date for me but nobody said anything, so neither did I!
I did not end up having my BCG until I was 21 years old. I arranged this after reading (probably in the Daily Mail or somewhere) that TB cases in the UK were on the up. I had to attend the Heart and Lung clinic at the actual hospital for it. At least being out of school I was no longer at risk of being punched on the arm after having it, given that we were led to believe at school that doing this to someone after the injection might cause their arm to fall off or something equally catastrophic.
Then there was the occasion where I saw the Practice Nurse for a routine appointment and whilst there she saw on the computer that my tetanus booster was due. She suggested doing it there and then! Erm, no love, this sort of thing requires weeks of mental preparation and anyway I'll take my chances with tetanus so don't worry about booking me in...
I had obviously improved somewhat by the time pregnancy occurred as with my second baby when the midwife mentioned that I should have the flu injection I responsibly went out to reception to make the appointment. The nice lady said they had a cancellation at 4.30 pm. THAT DAY. I had to abandon my usual policy of mental preparation (AKA delay and avoidance) and I went and had the injection. The things we do for our children!
Sunday 23 June 2013
Kleptomania
Well. Today I noticed that even given that I have been using my antiseptic mouthwash twice a day as advised, it is disappearing quite quickly.
I asked my husband about this and through his lack of real response, quickly established that he has been using it for himself! Read him the riot act about sharing bacteria and then marched him off to Boots today to get his own.
Haven't checked my special moisturiser tub again yet. That better not have been touched...
However he is forgiven as he made me some lovely bacon rolls for brekkie and took me to McDonald's for lunch. No special diets here - life's too short - and the steroids do make you starving!
I asked my husband about this and through his lack of real response, quickly established that he has been using it for himself! Read him the riot act about sharing bacteria and then marched him off to Boots today to get his own.
Haven't checked my special moisturiser tub again yet. That better not have been touched...
However he is forgiven as he made me some lovely bacon rolls for brekkie and took me to McDonald's for lunch. No special diets here - life's too short - and the steroids do make you starving!
Saturday 22 June 2013
Side effects
Well I went home to await the chemo time bomb of potential side effects.
Could not get to sleep until 4am due to the steroids but I will only be taking them for a few days now. Had major pins and needles in both legs but luckily that had gone by the morning.
Metallic mouth taste all day today. I missed out on that one during two pregnancies, looks like it's finally caught up with me now.
Thankfully no nausea yet but not counting my chickens, we're only 24 hours in!
Have lost all spatial awareness (Dan would say I didn't have much to start with). Knocked over a glass of water last night which has now found its way in to the workings of my bedside lamp and probably ruined that.
Nearly knocked over two further glasses today and banged my blood test bruised hand on a door handle.
Other than that, TIRED!
My friend took me to the hospital for my jab this afternoon. Side effects from that might be bone pain as happy white blood cells are hopefully created!
So now I am up to date with my blog. I will try to continue to post updates and periodically put the link on fb so that my friends know that another exciting instalment of fun and games is available for consumption. X
Could not get to sleep until 4am due to the steroids but I will only be taking them for a few days now. Had major pins and needles in both legs but luckily that had gone by the morning.
Metallic mouth taste all day today. I missed out on that one during two pregnancies, looks like it's finally caught up with me now.
Thankfully no nausea yet but not counting my chickens, we're only 24 hours in!
Have lost all spatial awareness (Dan would say I didn't have much to start with). Knocked over a glass of water last night which has now found its way in to the workings of my bedside lamp and probably ruined that.
Nearly knocked over two further glasses today and banged my blood test bruised hand on a door handle.
Other than that, TIRED!
My friend took me to the hospital for my jab this afternoon. Side effects from that might be bone pain as happy white blood cells are hopefully created!
So now I am up to date with my blog. I will try to continue to post updates and periodically put the link on fb so that my friends know that another exciting instalment of fun and games is available for consumption. X
First Chemo
After the port insertion they can use it straightaway so I was now good to go for my chemo.
I am on a regime known as FEC-T. Three sessions of FEC (yes this stands for something long and complicated) then three sessions of Taxotere. Highly toxic and one hopes, highly effective, drug regimes. Hair loss is virtually a certainty with FEC, usually within the first three weeks of starting it. Not massively bothered by that. Will see what sort of wigs are around, or if it's not too cold you might well see me with no hair at all but I will of course wear earrings to assist with identifying gender...
So I am on four hours bed rest following the surgical procedure. I am taken to one of three curtained bays within the chemo factory. There are also two areas of chairs where patients sit with their chemo drips. By the end of the afternoon most of those chairs are full!
A nurse called Laura looks after me. She hooks me up to a saline drip and then puts some steroids through my new port. This is called the "hedgehog injection". It temporarily makes women feel as if they have sat on a hedgehog. True. It was nowhere near as bad as childbirth though and only lasted a couple of minutes. How weird though!
Then it was time to start the FEC. The E stands for Epirubicin which is BRIGHT RED. The nurse puts everything through my port manually. I had expected to be hooked up to a drip bag. I asked about this and whether next time I would be in a chair. As the nurse injected the Epirubicin in to my main vein she casually answers no, Epirubicin is too dangerous for infusion from a bag. I resolve not to ask any more questions of this nature in the future :-/
Apparently when I start Taxotere that might be in a drip but the three FEC sessions will take place in a treatment room with a nurse.
I don't even feel the liquids going in to me and that part of the treatment passes without a hitch and takes around an hour. I have to wait a bit longer to finish my prescribed bed rest then I am packed off with steroids, anti sickness drugs plus back up anti sickness drugs in case the first ones don't work. I am armed with the phone number for the ward if I need to call anytime for example if it starts to look as if I have contracted an infection.
An appointment is made for me to come to the ward the next day for a white blood cell boosting injection to try to help my body guard against infection.
Whilst they don't expect you to lock yourself away, better safe than sorry so I am going to be taking sensible precautions and not really having visits from other people's children or going to really crowded places. My own children are germ ridden enough, thank you very much!
I am on a regime known as FEC-T. Three sessions of FEC (yes this stands for something long and complicated) then three sessions of Taxotere. Highly toxic and one hopes, highly effective, drug regimes. Hair loss is virtually a certainty with FEC, usually within the first three weeks of starting it. Not massively bothered by that. Will see what sort of wigs are around, or if it's not too cold you might well see me with no hair at all but I will of course wear earrings to assist with identifying gender...
So I am on four hours bed rest following the surgical procedure. I am taken to one of three curtained bays within the chemo factory. There are also two areas of chairs where patients sit with their chemo drips. By the end of the afternoon most of those chairs are full!
A nurse called Laura looks after me. She hooks me up to a saline drip and then puts some steroids through my new port. This is called the "hedgehog injection". It temporarily makes women feel as if they have sat on a hedgehog. True. It was nowhere near as bad as childbirth though and only lasted a couple of minutes. How weird though!
Then it was time to start the FEC. The E stands for Epirubicin which is BRIGHT RED. The nurse puts everything through my port manually. I had expected to be hooked up to a drip bag. I asked about this and whether next time I would be in a chair. As the nurse injected the Epirubicin in to my main vein she casually answers no, Epirubicin is too dangerous for infusion from a bag. I resolve not to ask any more questions of this nature in the future :-/
Apparently when I start Taxotere that might be in a drip but the three FEC sessions will take place in a treatment room with a nurse.
I don't even feel the liquids going in to me and that part of the treatment passes without a hitch and takes around an hour. I have to wait a bit longer to finish my prescribed bed rest then I am packed off with steroids, anti sickness drugs plus back up anti sickness drugs in case the first ones don't work. I am armed with the phone number for the ward if I need to call anytime for example if it starts to look as if I have contracted an infection.
An appointment is made for me to come to the ward the next day for a white blood cell boosting injection to try to help my body guard against infection.
Whilst they don't expect you to lock yourself away, better safe than sorry so I am going to be taking sensible precautions and not really having visits from other people's children or going to really crowded places. My own children are germ ridden enough, thank you very much!
Port Insertion
On Friday 21st June Dan and me turned up nice and early at the chemo factory as instructed. It was really weird seeing it empty given how manic it is come the afternoon.
The anaesthetist was very excited to see me there already as they had four patients on their morning list. He wanted to get started straight away. So I get gowned up and walk down to theatre. Best laid plans...
Again I ended up chatting to a very nice nurse for some considerable time. He asked me about my job and I told him, then panicked that he might hate Solicitors and do something awful to me whilst I was in theatre!! I'm sure that would never really happen.
I asked whether all the nurses and people would still be in the room during the procedure and was told yes and more would probably arrive too. My doctor himself was in an early morning meeting. There were also anaesthetists and x ray nurses as they use chest x ray to ensure that the Port has been correctly placed. There was an added complication in that maintenance had been called to sort out a lead door to the theatre which had a missing lock. Not sure whether that was ever resolved.
The anaesthetist had to put my cannula in the side of my hand due to bruising from blood tests earlier in the week. Given this poor state of affairs from just a couple of blood tests I was optimistic that the Port could only be a good thing despite the initial faff.
I was not nervous at all about this procedure and I was even looking forward to trying a new form of sedation! With the local plus sedative this meant no need for breathing tubes either and no real recovery time afterwards.
Finally I was on the table and the doctor started checking my veins with the ultrasound. They told me I might feel woozy and that is the last thing I remember before waking up in Recovery.
Afterwards the nurse on the Unit looked at my dose of Propofol and assumed I must have been aware during the procedure but I was completely asleep! Good stuff. Easy to overdose, allegedly...
Sadly without the numbness and whatever pain relief they give you during a more major op, the port has so far been more painful than the double mastectomy. Ho hum. Once the uncomfortableness goes I am sure the benefits of having it will outweigh some short term discomfort for a few days.
The anaesthetist was very excited to see me there already as they had four patients on their morning list. He wanted to get started straight away. So I get gowned up and walk down to theatre. Best laid plans...
Again I ended up chatting to a very nice nurse for some considerable time. He asked me about my job and I told him, then panicked that he might hate Solicitors and do something awful to me whilst I was in theatre!! I'm sure that would never really happen.
I asked whether all the nurses and people would still be in the room during the procedure and was told yes and more would probably arrive too. My doctor himself was in an early morning meeting. There were also anaesthetists and x ray nurses as they use chest x ray to ensure that the Port has been correctly placed. There was an added complication in that maintenance had been called to sort out a lead door to the theatre which had a missing lock. Not sure whether that was ever resolved.
The anaesthetist had to put my cannula in the side of my hand due to bruising from blood tests earlier in the week. Given this poor state of affairs from just a couple of blood tests I was optimistic that the Port could only be a good thing despite the initial faff.
I was not nervous at all about this procedure and I was even looking forward to trying a new form of sedation! With the local plus sedative this meant no need for breathing tubes either and no real recovery time afterwards.
Finally I was on the table and the doctor started checking my veins with the ultrasound. They told me I might feel woozy and that is the last thing I remember before waking up in Recovery.
Afterwards the nurse on the Unit looked at my dose of Propofol and assumed I must have been aware during the procedure but I was completely asleep! Good stuff. Easy to overdose, allegedly...
Sadly without the numbness and whatever pain relief they give you during a more major op, the port has so far been more painful than the double mastectomy. Ho hum. Once the uncomfortableness goes I am sure the benefits of having it will outweigh some short term discomfort for a few days.
Pre assessment for port insertion
My dad took me to my appointments on Thursday 20th June. We turned up in Radiology having no clue what time my appointment was, who with, or what it was for.
Luckily the receptionist knew. I was there for 1.45 but my appointments weren't until 2.30 and 3.30. Luckily cancer patient VIP status appeared to have kicked in again as the lists were magically rearranged and soon I was talking to the vascular radiologist (I think) who would insert my port. Another consent form. Risks included punctured lung. That had never happened to this doctor before though, so sign me up again!
The procedure would be carried out under local anaesthetic. The doctor explained that some people (crazy people I assume) prefer to be awake and aware during the process and others like to be sedated. I informed him I was firmly in the sedation camp and he asked me if I had ever heard of Propofol. I had, vaguely, but could not work out when. He reminded me it was also known as "magic milk", the late Michael Jackson's drug of choice. Say no more, I agreed to that straightaway and told him I wanted enough to send me in to sleep mode. But not dead mode, obv.
There would be two incisions and scars. What? Scarring on my completely blemish free and bountiful cleavage??!
I then saw a nurse, had my obs done and the standard MRSA screening. I thought I was free to go but then I was sent to Heart and Lung for my first ever ECG. That was over and done with really quickly too and dad took me home.
Luckily the receptionist knew. I was there for 1.45 but my appointments weren't until 2.30 and 3.30. Luckily cancer patient VIP status appeared to have kicked in again as the lists were magically rearranged and soon I was talking to the vascular radiologist (I think) who would insert my port. Another consent form. Risks included punctured lung. That had never happened to this doctor before though, so sign me up again!
The procedure would be carried out under local anaesthetic. The doctor explained that some people (crazy people I assume) prefer to be awake and aware during the process and others like to be sedated. I informed him I was firmly in the sedation camp and he asked me if I had ever heard of Propofol. I had, vaguely, but could not work out when. He reminded me it was also known as "magic milk", the late Michael Jackson's drug of choice. Say no more, I agreed to that straightaway and told him I wanted enough to send me in to sleep mode. But not dead mode, obv.
There would be two incisions and scars. What? Scarring on my completely blemish free and bountiful cleavage??!
I then saw a nurse, had my obs done and the standard MRSA screening. I thought I was free to go but then I was sent to Heart and Lung for my first ever ECG. That was over and done with really quickly too and dad took me home.
New Patient Meeting - Ricky Grant Unit
I phoned the Ricky Grant Unit ("chemo factory") to find out when my new patient appointment was. It was already on the system for Wednesday 19th June. The Oncologist had suggested that I would start my chemo within 4 to 6 weeks.
I was going to be having a Portacath inserted in my chest too, this being the best option for me due to having small children. There are several other options including a line in your arm but the idea of always having tubes poking out of my arm made me squeamish. I was happy to go ahead with the Port even though it is initially a more invasive procedure carried out by a surgeon under local anaesthetic (and strong sedatives, yay!). More on this later. But anyway I thought all that would take a while to line up, excuse the pun...
So I was surprised to receive a call on Monday 17th letting me know that I would have a pre assessment on Thursday 20th, port insertion on Friday 21st and the first chemo on the Friday afternoon! I was very impressed with their efficiency.
I went to my new patient talk, met a nice nurse and was given antiseptic mouthwash for possible mouth related side effects of chemo, plus an anaesthetic mouthwash in case it all starts to go really wrong...
I also got a free tub of some lovely intensive moisturiser. When I took it home I told Dan it contained chemo chemicals therefore he must not use it. Mwahahahahahaaaa.
I was going to be having a Portacath inserted in my chest too, this being the best option for me due to having small children. There are several other options including a line in your arm but the idea of always having tubes poking out of my arm made me squeamish. I was happy to go ahead with the Port even though it is initially a more invasive procedure carried out by a surgeon under local anaesthetic (and strong sedatives, yay!). More on this later. But anyway I thought all that would take a while to line up, excuse the pun...
So I was surprised to receive a call on Monday 17th letting me know that I would have a pre assessment on Thursday 20th, port insertion on Friday 21st and the first chemo on the Friday afternoon! I was very impressed with their efficiency.
I went to my new patient talk, met a nice nurse and was given antiseptic mouthwash for possible mouth related side effects of chemo, plus an anaesthetic mouthwash in case it all starts to go really wrong...
I also got a free tub of some lovely intensive moisturiser. When I took it home I told Dan it contained chemo chemicals therefore he must not use it. Mwahahahahahaaaa.
Oncologist Appointment
On Friday 7th June I head to see the Oncologist. My sister Helen kindly takes me whilst my brother in law has his first experience of flying solo with a pre schooler. Thankfully the baby was at nursery all day.
This is the first appointment Helen has attended. We don't have to wait too long and we go in and meet another lovely chap who has not one but two nurse bodyguards!
The first thing he asks me is what my understanding of the situation is. Good opener, helps him gauge what sort of uphill struggle he might have, I'm taking that one away with me to use when I return to work.
Luckily for him I am able to confirm that I have seen a copy of the letter from my surgeon that he has in front of him and that I am aware of what's being recommended for me. Knowing that this might be his opportunity to catch up on his list, he seems quite relaxed then! He is brilliant, takes me through everything. We have a conversation about whether I want more children. After peeling myself off the floor I explain that I don't and demonstrate my sparkling sense of humour by informing him that the one good thing about this illness is that it has avoided an awkward conversation with my husband if and when the subject of a third baby had ever reared its head.
He then fills in the best and most detailed consent form I have ever seen - potential side effects ranging from diarrhoea to death. He pushes it across the table to me and I cannot resist saying brightly "Well, sign me up!!!". Helen silently guffaws.
Afterwards I realise I could have added "And it's free? What more could a girl want?!" But I didn't want to be sectioned there and then on top of everything else, so probably best that I refrained...
Not much else to report other than that he confirmed what my surgeon had said would happen next. He also got in on my jokes by saying "Sometimes your ovaries start working again after the treatment. But we won't tell your husband that!". Good man.
A small caveat here - I do not mean to sound flippant or ungrateful on the children issue. I am very very happy and eternally grateful to have my two babies. But, cancer or no cancer, I personally did not want any more. And this is my blog, and I'm talking here. So there... ;-)
This is the first appointment Helen has attended. We don't have to wait too long and we go in and meet another lovely chap who has not one but two nurse bodyguards!
The first thing he asks me is what my understanding of the situation is. Good opener, helps him gauge what sort of uphill struggle he might have, I'm taking that one away with me to use when I return to work.
Luckily for him I am able to confirm that I have seen a copy of the letter from my surgeon that he has in front of him and that I am aware of what's being recommended for me. Knowing that this might be his opportunity to catch up on his list, he seems quite relaxed then! He is brilliant, takes me through everything. We have a conversation about whether I want more children. After peeling myself off the floor I explain that I don't and demonstrate my sparkling sense of humour by informing him that the one good thing about this illness is that it has avoided an awkward conversation with my husband if and when the subject of a third baby had ever reared its head.
He then fills in the best and most detailed consent form I have ever seen - potential side effects ranging from diarrhoea to death. He pushes it across the table to me and I cannot resist saying brightly "Well, sign me up!!!". Helen silently guffaws.
Afterwards I realise I could have added "And it's free? What more could a girl want?!" But I didn't want to be sectioned there and then on top of everything else, so probably best that I refrained...
Not much else to report other than that he confirmed what my surgeon had said would happen next. He also got in on my jokes by saying "Sometimes your ovaries start working again after the treatment. But we won't tell your husband that!". Good man.
A small caveat here - I do not mean to sound flippant or ungrateful on the children issue. I am very very happy and eternally grateful to have my two babies. But, cancer or no cancer, I personally did not want any more. And this is my blog, and I'm talking here. So there... ;-)
More results
We sit down and my Consultant gets lots of pieces of paper out. He has the Pathology report.
He confirms that the "preventative" right hand side tissue removal showed no evidence of disease, as we hoped and expected.
The affected left side tumours have undergone extensive tests. I am a medical anomaly and not in a good way. My body has managed to create two different types of tumour! Invasive Ductal and Invasive Lobular Carcinoma, for the anoraks amongst us. My Consultant quickly realised that he was dealing with a BC Anorak when he first met me, by the way...
The Lobular variety likes to recur in the same site on either side. This makes me even more comfortable with the choices I made about my surgery. I will need chemo to nuke any stray cells throughout my whole body. That will be six sessions, each 3 weeks apart. Then my surgeon will operate again to remove the majority of lymph nodes under my left armpit. Then once that's healed I will receive targeted radiotherapy to try and prevent local recurrence in the scar tissue. Glad I didn't set my heart on immediate reconstruction as these results would have blown that process out of the water as radiotherapy causes too much skin trauma. I will also take hormone tablets in due course.
I never really expected surgery to be the end so I was quite prepared for this information and pleased in a way that the decision had been made for me!
I would be referred to the Oncologist to make a start with chemo.
Thereafter I saw the nurse the next week as arranged and she removed the steri strips. It was great to have nothing stuck to me anymore!
He confirms that the "preventative" right hand side tissue removal showed no evidence of disease, as we hoped and expected.
The affected left side tumours have undergone extensive tests. I am a medical anomaly and not in a good way. My body has managed to create two different types of tumour! Invasive Ductal and Invasive Lobular Carcinoma, for the anoraks amongst us. My Consultant quickly realised that he was dealing with a BC Anorak when he first met me, by the way...
The Lobular variety likes to recur in the same site on either side. This makes me even more comfortable with the choices I made about my surgery. I will need chemo to nuke any stray cells throughout my whole body. That will be six sessions, each 3 weeks apart. Then my surgeon will operate again to remove the majority of lymph nodes under my left armpit. Then once that's healed I will receive targeted radiotherapy to try and prevent local recurrence in the scar tissue. Glad I didn't set my heart on immediate reconstruction as these results would have blown that process out of the water as radiotherapy causes too much skin trauma. I will also take hormone tablets in due course.
I never really expected surgery to be the end so I was quite prepared for this information and pleased in a way that the decision had been made for me!
I would be referred to the Oncologist to make a start with chemo.
Thereafter I saw the nurse the next week as arranged and she removed the steri strips. It was great to have nothing stuck to me anymore!
Follow up appointment
On 24th May I trundle back to the Breast Care Unit to see my Consultant. This is Dan's first time of meeting "the man with the scalpel". It has been really weird reconciling the man speaking to me in the dapper suit in his office as being the same man who would have the ability to wear his scrubs and perform my operation. It's quite humbling realising how incredibly well trained and skilled these professionals are.
I am pleased to find that they will be removing my massive waterproof dressings that day. The nurse starts taking off one side and it is taking ages. My Consultant goes off to make a phone call then returns to find the process still ongoing so rolls up his sleeves and helps her himself! I now know this is because the surgeons find any opportunity to look at their work really rather exciting. Fair play to them, he did a good job.
I am left with two long rows of steri strips which the nurse tells me I can remove myself in due course. She then clocks the aghast look crossing my face and she offers to book me in at Newton the week after to have the nurse do it instead!
I am pleased to find that they will be removing my massive waterproof dressings that day. The nurse starts taking off one side and it is taking ages. My Consultant goes off to make a phone call then returns to find the process still ongoing so rolls up his sleeves and helps her himself! I now know this is because the surgeons find any opportunity to look at their work really rather exciting. Fair play to them, he did a good job.
I am left with two long rows of steri strips which the nurse tells me I can remove myself in due course. She then clocks the aghast look crossing my face and she offers to book me in at Newton the week after to have the nurse do it instead!
Back Home
I am glad to get home and even more glad not to have the wound drains in as they make you look and feel like a total invalid. Also Lauren would have chewed them.
At home I am greeted by some absolutely touching cards and lovely flowers. Illness revelation experience #2 coming up - I start to feel quite guilty that I have probably not been as considerate and thoughtful to others I know who have been ill in the past. Although I have thought about these people frequently and perhaps sent them a Facebook message, I now realise that the effort that goes in to writing and sending a card really counts for something. That's not to say that there is anything wrong with fb messages or e mails either though! Personally I've really enjoyed them too. I think I have never been completely sure what to do or send people in these situations and instead of following my instincts I have sometimes not done anything. But onwards and upwards, we live and learn.
I was not in as much pain as I expected after my op and thankfully some of the testimonials I had read on the dreaded Internet such as "I couldn't even lift my arm to brush my teeth!" turned out to be utter utter nonsense. Maybe I was lucky. I still had to be careful of what I did or lifted. In fact I discovered could just about lift the iPad whilst lying in bed, which suited me just fine ;-)
Big up to all my fabulous family members at this point for all their invaluable help, I simply do not know where we would be without them xx
At home I am greeted by some absolutely touching cards and lovely flowers. Illness revelation experience #2 coming up - I start to feel quite guilty that I have probably not been as considerate and thoughtful to others I know who have been ill in the past. Although I have thought about these people frequently and perhaps sent them a Facebook message, I now realise that the effort that goes in to writing and sending a card really counts for something. That's not to say that there is anything wrong with fb messages or e mails either though! Personally I've really enjoyed them too. I think I have never been completely sure what to do or send people in these situations and instead of following my instincts I have sometimes not done anything. But onwards and upwards, we live and learn.
I was not in as much pain as I expected after my op and thankfully some of the testimonials I had read on the dreaded Internet such as "I couldn't even lift my arm to brush my teeth!" turned out to be utter utter nonsense. Maybe I was lucky. I still had to be careful of what I did or lifted. In fact I discovered could just about lift the iPad whilst lying in bed, which suited me just fine ;-)
Big up to all my fabulous family members at this point for all their invaluable help, I simply do not know where we would be without them xx
Friday 21 June 2013
Hospital Stay
My Consultant arrives before 9.00 the next morning just to check whether I want to be discharged as he won't be there again til Monday.
No fear, mate - I am enjoying my quiet room and I am hoping to improve enough to get my drains taken out on Monday so i don't have to manage them myself at home. I shall stay until Monday please.
Happy with that he goes away again but still phones the ward Sunday to check on me again, bless him! The rest of the stay passes uneventfully save for the periodic screams coming from the windows of the labour suites two floors up. These are simply a mildly interesting distraction, unless of course you happen to be listening to them whilst pregnant and waiting to be induced yourself. Been there, done that.
On Monday my Consultant arrives early, looks mildly surprised to see my faithful friend who has snuck in to my room first thing on the way to her fracture clinic appointment (yes all my friends copied me by coming to hospital the weekend i was there!!) discharges me and says the drains can come out, yay! Having realised that maternity will have gas and air in abundance I talk the nurse in to writing me up a prescription for it and the drain removal is a pleasant trancey haze :) . Did I mention how much I love gas and air...?
No fear, mate - I am enjoying my quiet room and I am hoping to improve enough to get my drains taken out on Monday so i don't have to manage them myself at home. I shall stay until Monday please.
Happy with that he goes away again but still phones the ward Sunday to check on me again, bless him! The rest of the stay passes uneventfully save for the periodic screams coming from the windows of the labour suites two floors up. These are simply a mildly interesting distraction, unless of course you happen to be listening to them whilst pregnant and waiting to be induced yourself. Been there, done that.
On Monday my Consultant arrives early, looks mildly surprised to see my faithful friend who has snuck in to my room first thing on the way to her fracture clinic appointment (yes all my friends copied me by coming to hospital the weekend i was there!!) discharges me and says the drains can come out, yay! Having realised that maternity will have gas and air in abundance I talk the nurse in to writing me up a prescription for it and the drain removal is a pleasant trancey haze :) . Did I mention how much I love gas and air...?
Post op
I am wheeled up to my ward and met by two lovely nurses beaming at me and saying "you've got a private room!". Now you're talking.
Dan and my dad come in and check I am still alive. I discover that I can only lie on my (aching) back as I have wound drains hanging from each side. Then my friend is allowed to pop in even though visiting times are over. She gives me a card and a teddy. The teddy proves very useful for propping under my back that night.
Everyone goes home and the nurses pop in periodically to do my obs. One of my hapless friends ends up texting me to report that he is in A&E having fractured his finger falling over on a night out. He gets that all sorted and gets A&E to ring through to see if he can visit me. At 2am. I am not opposed to this given that I am still awake but the nurses upon discovering that a) I have been texting and b) that I am still awake report back to A&E that I am getting some sleep now and promptly administer ora morph. This still does not really get me to sleep but being spaced out probably gave me something else to do I suppose.
Dan and my dad come in and check I am still alive. I discover that I can only lie on my (aching) back as I have wound drains hanging from each side. Then my friend is allowed to pop in even though visiting times are over. She gives me a card and a teddy. The teddy proves very useful for propping under my back that night.
Everyone goes home and the nurses pop in periodically to do my obs. One of my hapless friends ends up texting me to report that he is in A&E having fractured his finger falling over on a night out. He gets that all sorted and gets A&E to ring through to see if he can visit me. At 2am. I am not opposed to this given that I am still awake but the nurses upon discovering that a) I have been texting and b) that I am still awake report back to A&E that I am getting some sleep now and promptly administer ora morph. This still does not really get me to sleep but being spaced out probably gave me something else to do I suppose.
My operation
Eventually I am gowned up and wheeled to theatre. Then there is a slight verbal skirmish between the theatre staff and the recovery side. Recovery are not ready for the woman in theatre who therefore remains on the table. I therefore remain on my table on my side. For 45 minutes...
The nurse looking after me was a lovely chatty chap and it was nice to see that every workplace has these little "wrangles"!
The anaesthetist lady inserts my cannula - lots of belt tightening on my arm and gentle slapping required here, I feel a bit like a heroin addict.
Then she gives me what she calls "intravenous gin and tonic". I think this might be a pre med?? I know nothing further about what happens next until I wake up in Recovery with a bloody sore back. This is from my head being back for the breathing tubes. The tubes themselves are out and a recovery nurse is looking at me like he has been waiting ages. He says "I took your tubes out" and I asked him if I appeared to be awake when he did that. "Oh yes" he says. Christ only knows what I said to him as I have no recollection of that waking episode whatsoever.
The nurse looking after me was a lovely chatty chap and it was nice to see that every workplace has these little "wrangles"!
The anaesthetist lady inserts my cannula - lots of belt tightening on my arm and gentle slapping required here, I feel a bit like a heroin addict.
Then she gives me what she calls "intravenous gin and tonic". I think this might be a pre med?? I know nothing further about what happens next until I wake up in Recovery with a bloody sore back. This is from my head being back for the breathing tubes. The tubes themselves are out and a recovery nurse is looking at me like he has been waiting ages. He says "I took your tubes out" and I asked him if I appeared to be awake when he did that. "Oh yes" he says. Christ only knows what I said to him as I have no recollection of that waking episode whatsoever.
Surgery day
So on Friday 17th May I turn up at hospital with my massive wheely case - can never travel light - and my husband. My parents were also joining us later and my sister had valiantly stepped in to manage the children for the day.
We go to Nuclear Medicine which is down many many corridors in the old part of the hospital. I have the radioactive tracer dye injected which is the first step of the Sentinel Lymph Node Biopsy. FYI the needle is tiny and nothing compared to the biopsy. More happy days.
I am slid in to the polo shaped Gamma scanner and it takes pictures of the nodes most likely to be affected.
That is all finished by 10am and I then progress to Surgical Admissions. Bit like an airport, that. I am told I am on the afternoon list and I am second. In other words, you will get your operation if you have not died of starvation first, bearing in mind that I hadn't eaten since tea time the night before! Can't be avoided though and they all do their best.
I see various people. The anaesthetist - when someone asks you to show them how far you can bend your head back you know it's not gonna be pretty after the op! One of my surgeons - yes, I have two, get me! He draws on me with a marker pen to make sure they don't take off my arm instead I assume.
We go to Nuclear Medicine which is down many many corridors in the old part of the hospital. I have the radioactive tracer dye injected which is the first step of the Sentinel Lymph Node Biopsy. FYI the needle is tiny and nothing compared to the biopsy. More happy days.
I am slid in to the polo shaped Gamma scanner and it takes pictures of the nodes most likely to be affected.
That is all finished by 10am and I then progress to Surgical Admissions. Bit like an airport, that. I am told I am on the afternoon list and I am second. In other words, you will get your operation if you have not died of starvation first, bearing in mind that I hadn't eaten since tea time the night before! Can't be avoided though and they all do their best.
I see various people. The anaesthetist - when someone asks you to show them how far you can bend your head back you know it's not gonna be pretty after the op! One of my surgeons - yes, I have two, get me! He draws on me with a marker pen to make sure they don't take off my arm instead I assume.
Next Consultant Appointment
On Friday 19th April my friend came with me again and we went to see my Consultant. He agreed that we might as well do everything together and he also put up much less resistance than I expected when I repeated my request for a double mastectomy. I was worried he would balk at removing what was on the face of it healthy tissue.
He was fine with it though and gave me the date for my surgery there and then. Friday 17th May. I have been so impressed with the way that I have absolutely felt fully involved with all these decisions and I have never found my Consultant to be difficult or aloof in any way whatsoever, quite the opposite.
As soon as he mentioned the surgery date my friend jumped in with "so that's Jenny's date now then, is it?". I think my Consultant was a little bit scared of her, lol lol.
I was pre assessed again on 8th May for this new surgery date. Things went comparatively quiet in the meantime and I made the most of feeling well and seeing friends and family as much as possible. I was still working my usual 3 days a week too. Didn't mind doing that but was keen to avoid everyone finding out for fear of constant approaches being made to discuss it! I HATE any form of small talk under normal circumstances and this was no different. I do so appreciate that people are concerned though and this is part of the reason for starting this blog.
He was fine with it though and gave me the date for my surgery there and then. Friday 17th May. I have been so impressed with the way that I have absolutely felt fully involved with all these decisions and I have never found my Consultant to be difficult or aloof in any way whatsoever, quite the opposite.
As soon as he mentioned the surgery date my friend jumped in with "so that's Jenny's date now then, is it?". I think my Consultant was a little bit scared of her, lol lol.
I was pre assessed again on 8th May for this new surgery date. Things went comparatively quiet in the meantime and I made the most of feeling well and seeing friends and family as much as possible. I was still working my usual 3 days a week too. Didn't mind doing that but was keen to avoid everyone finding out for fear of constant approaches being made to discuss it! I HATE any form of small talk under normal circumstances and this was no different. I do so appreciate that people are concerned though and this is part of the reason for starting this blog.
What to do next?
I turned up for my pre assessment on 18th April the idea being that I would see the Breast Care Nurse (BCN) and be assessed in outpatients for my Sentinel Lymph Node Biopsy. (Google it...).
In the meantime I had been reading the leaflet about Reconstruction options and decided I didn't want any of them. Not immediately anyway. I didn't want anything extra done that could go wrong and delay any further treatment I might need. So I tell this to the BCN who advises me that in that case there is little point in a stand alone SLNB. I may as well have it at the same time as mastectomy.
This sounds great to me as it means I will get an actual date for my main op and only have the general anaesthetic and recovery time once. Remember, I still have surgery virgin status at this stage and it is a major thing for me.
I go for my standard pre assessment anyway and the BCN passes this new development on to my Consultant who gives me an appointment to discuss the next day. In outpatients pre assessment I quickly discover that cancer patients appear be treated as hospital VIPs. I have my blood taken by the senior nurse rather than the junior one who kept running around like a headless chicken, asking for help with every blood test she tried to do on the other patients and generally putting the fear of god in to me.
In the meantime I had been reading the leaflet about Reconstruction options and decided I didn't want any of them. Not immediately anyway. I didn't want anything extra done that could go wrong and delay any further treatment I might need. So I tell this to the BCN who advises me that in that case there is little point in a stand alone SLNB. I may as well have it at the same time as mastectomy.
This sounds great to me as it means I will get an actual date for my main op and only have the general anaesthetic and recovery time once. Remember, I still have surgery virgin status at this stage and it is a major thing for me.
I go for my standard pre assessment anyway and the BCN passes this new development on to my Consultant who gives me an appointment to discuss the next day. In outpatients pre assessment I quickly discover that cancer patients appear be treated as hospital VIPs. I have my blood taken by the senior nurse rather than the junior one who kept running around like a headless chicken, asking for help with every blood test she tried to do on the other patients and generally putting the fear of god in to me.
Results Day - The Aftermath
I won't go in to what I felt in detail, just to confirm that in addition to the bottom falling out of my world I had the following immediate concerns:
1. The fact that I wasn't going to get to the County Court to assist Counsel after all. I e mailed him and said I was feeling unwell following my appointment. He was fine with it and had already sorted everything out anyway.
#redundant, moi??
2. Telling family including parents and sister, friends and work that I had BC when I hadn't even mentioned the tests I was having at any point.
My friend again was a godsend. She rang work and broke the news to our manager who immediately forgave us for going AWOL and then came and met us that day to discuss everything.
She came with me to tell my mum, who then cascaded the news to my sister. My dad was on holiday so I had to wait a week to tell him. Not easy. Awful not being able to say anything reassuring either because you really just don't know.
1. The fact that I wasn't going to get to the County Court to assist Counsel after all. I e mailed him and said I was feeling unwell following my appointment. He was fine with it and had already sorted everything out anyway.
#redundant, moi??
2. Telling family including parents and sister, friends and work that I had BC when I hadn't even mentioned the tests I was having at any point.
My friend again was a godsend. She rang work and broke the news to our manager who immediately forgave us for going AWOL and then came and met us that day to discuss everything.
She came with me to tell my mum, who then cascaded the news to my sister. My dad was on holiday so I had to wait a week to tell him. Not easy. Awful not being able to say anything reassuring either because you really just don't know.
Results Appointment
On Friday 12th April my friend comes with me to get my results. She is supposed to be at work and I am supposed to be sitting behind Counsel at a County Court Trial. Due to the covert nature of our activities we haven't told anyone at work that we won't be there. Awkward...
We get to the hospital and we wait for my appointment. I have one of my now recurrent nearly panic attacks whilst sitting waiting. Par for the course.
We go in together to see my Consultant. He says that although he felt that the lump would more than likely be benign, in fact the biopsy has shown two areas of Invasive Ductal Carcinoma. The ultrasound did not show armpit lymph node involvement but that is not conclusive. Given the two separate areas, and, lets face it, the relatively small area he has to work with (!!) he recommended mastectomy. I was in full agreement and asked him there and then to remove the unaffected side as well. He said he would also refer me for genetic testing given my family history but that no imminent surgery decisions turn on that as basically it takes bloody ages.
He gave me the leaflets about reconstruction and booked me in for a sentinel lymph node biopsy on 24th April to check for spread of cancerous cells. I would come in for the results of that on 2nd May.
We get to the hospital and we wait for my appointment. I have one of my now recurrent nearly panic attacks whilst sitting waiting. Par for the course.
We go in together to see my Consultant. He says that although he felt that the lump would more than likely be benign, in fact the biopsy has shown two areas of Invasive Ductal Carcinoma. The ultrasound did not show armpit lymph node involvement but that is not conclusive. Given the two separate areas, and, lets face it, the relatively small area he has to work with (!!) he recommended mastectomy. I was in full agreement and asked him there and then to remove the unaffected side as well. He said he would also refer me for genetic testing given my family history but that no imminent surgery decisions turn on that as basically it takes bloody ages.
He gave me the leaflets about reconstruction and booked me in for a sentinel lymph node biopsy on 24th April to check for spread of cancerous cells. I would come in for the results of that on 2nd May.
After the biopsy
Radiographer and associated nurses all suspiciously quiet throughout. Radiographer asks me if I can return for results on Friday 12th April. I don't see anything unduly concerning about this given that clinic day appears to be Friday and waiting until the Friday after would have taken me outside the 8 day target time for results.
I have several steri strips on the biopsy wound in a star shape which I can take off after a few days.
My friend drove me back to my car and I went home to take over looking after the kids again.
I have several steri strips on the biopsy wound in a star shape which I can take off after a few days.
My friend drove me back to my car and I went home to take over looking after the kids again.
Biopsy part 2
So I'm back from the mammogram, the radiographer has had a look and calls me back through to the ultrasound room.
He is going to do a biopsy under local anaesthetic. He injects the anaesthetic then shows me the sound of the needle click and says he will be doing that twice. I assume he is going to be taking two samples of the same lump. More on that later...
Without wishing to alarm anyone, the biopsy needle is not a needle it is more of a dart. However it does not hurt due to the local anaesthetic, so happy days.
I should add at this stage that I was by no means an expert with hospital matters. During pregnancy I was one of those people who answered no, no, no to every "have you got" checklist listing illnesses, blood pressure etc. I had stayed in hospital for a total of one night in my entire adult life and that was after having my first baby. The most invasive surgical procedure I had ever undergone was two lots of stitches again both after childbirth and absolutely off the planet on my good friend gas and air. So that biopsy was the most invasive thing I had undergone without the glorious benefit of gas and air.
Reader, I didn't like it, but I coped. I coped so much better than I thought I would. Having my friend waiting for me afterwards made it all massively easier.
He is going to do a biopsy under local anaesthetic. He injects the anaesthetic then shows me the sound of the needle click and says he will be doing that twice. I assume he is going to be taking two samples of the same lump. More on that later...
Without wishing to alarm anyone, the biopsy needle is not a needle it is more of a dart. However it does not hurt due to the local anaesthetic, so happy days.
I should add at this stage that I was by no means an expert with hospital matters. During pregnancy I was one of those people who answered no, no, no to every "have you got" checklist listing illnesses, blood pressure etc. I had stayed in hospital for a total of one night in my entire adult life and that was after having my first baby. The most invasive surgical procedure I had ever undergone was two lots of stitches again both after childbirth and absolutely off the planet on my good friend gas and air. So that biopsy was the most invasive thing I had undergone without the glorious benefit of gas and air.
Reader, I didn't like it, but I coped. I coped so much better than I thought I would. Having my friend waiting for me afterwards made it all massively easier.
The Biopsy
So after leaving the Consultant's room I go downstairs to the Radiology/Biopsy area. I am taken in to a room and invited to undress my top half. I do so and put on the tie up cape they have given me. The capes are apparently one size only and I have no idea how they would provide any coverage for the larger lady, or even the average sized lady!
Anyway, I put my cape on and carry my clothes in the basket they've given me. I look and feel like Little Red Riding Hood.
After only a short wait I am taken through to the Radiographer who has a look with the ultrasound. Makes no comment whatsoever then orders a mammogram too. I go up in the lift with the nurse who on the way up looks at my date of birth and asks me my age. I tell her 33. Silence. I say "erm, why...?", assuming that she is thinking "oh how tragic, only 33 and you're gonna die".
She explains that they don't normally do mammograms on under 35's.
I have the mammogram, it was uncomfortable but fine really.
Anyway, I put my cape on and carry my clothes in the basket they've given me. I look and feel like Little Red Riding Hood.
After only a short wait I am taken through to the Radiographer who has a look with the ultrasound. Makes no comment whatsoever then orders a mammogram too. I go up in the lift with the nurse who on the way up looks at my date of birth and asks me my age. I tell her 33. Silence. I say "erm, why...?", assuming that she is thinking "oh how tragic, only 33 and you're gonna die".
She explains that they don't normally do mammograms on under 35's.
I have the mammogram, it was uncomfortable but fine really.
The Clinic
So on 9th April my friend kindly drove me to the Breast Care Unit. I checked in at reception but obviously didn't listen properly when they told us how many flights of stairs to go up. Cue me and my chum sat there waiting on the middle floor waiting room on our own with no lights on (in our defence, the waiting room radio was on!) until a nurse came to fetch us and inform us that we should be on the next floor up. Waiting room FAIL.
I get called in to see the Consultant. Absolutely lovely chap. Always accompanied by what I call his "nurse bodyguard" but who can blame him?! I am no stranger to leaning heavily on my support staff, especially where time is so precious and you have other people to see and other important work to do.
He and his trainee both have a go at examining me and he expresses the view that my lump has all the signs of a benign growth. Even so, he still sent me for a biopsy.
I get called in to see the Consultant. Absolutely lovely chap. Always accompanied by what I call his "nurse bodyguard" but who can blame him?! I am no stranger to leaning heavily on my support staff, especially where time is so precious and you have other people to see and other important work to do.
He and his trainee both have a go at examining me and he expresses the view that my lump has all the signs of a benign growth. Even so, he still sent me for a biopsy.
Social events and fab friends
On the weekend of 6th April Dan and me went to Wales for our friends' wedding. This was a simply lovely weekend and taught me my first important lesson about illness. Previously I had always thought that anyone with potential or actual illness must be thinking about it all the time and cannot enjoy anything.
Luckily, I was wrong. I thoroughly enjoyed myself and perhaps even appreciated it more because of the background worries I had. I certainly wasn't sat in the corner feeling bitter and jealous of all the other "healthy" people. My perception in the past that this must be what people with serious illness feel like was totally unfounded.
Luckily, I was wrong. I thoroughly enjoyed myself and perhaps even appreciated it more because of the background worries I had. I certainly wasn't sat in the corner feeling bitter and jealous of all the other "healthy" people. My perception in the past that this must be what people with serious illness feel like was totally unfounded.
The beginning
Well, where to start?
Let's do a chronology. Lawyers love a good chronology.
March 2013 - I found a lump in my left breast. Consulted Dr Google and self diagnosed it as a benign fibroadenoma. Thankfully didn't rely on this and booked a GP appointment to confirm mine and Google's very educated diagnosis instead.
26 March 2013 - saw my GP who examined me and said he makes a referral in 99% of cases involving breast lumps. Referred me to the Breast Care Unit at Torbay which I was quite happy with as I definitely wanted it looked in to, especially given a strong family history of breast cancer (hereafter "BC") on my dad's side.
Almost immediately afterwards I received a letter giving me an appointment date of 9th April. It is a standard two week wait on these referrals, which I think is a very impressive policy really given how busy they must be.
So far only my husband Dan knew about all this. I wasn't planning on telling anyone if the tests turned out ok. I did tell one of my friends too. She had been through these sorts of tests before - thankfully with a benign result - and knew the ropes, as well as being a fantastic friend generally. She immediately offered to come with me on 9th April.
Let's do a chronology. Lawyers love a good chronology.
March 2013 - I found a lump in my left breast. Consulted Dr Google and self diagnosed it as a benign fibroadenoma. Thankfully didn't rely on this and booked a GP appointment to confirm mine and Google's very educated diagnosis instead.
26 March 2013 - saw my GP who examined me and said he makes a referral in 99% of cases involving breast lumps. Referred me to the Breast Care Unit at Torbay which I was quite happy with as I definitely wanted it looked in to, especially given a strong family history of breast cancer (hereafter "BC") on my dad's side.
Almost immediately afterwards I received a letter giving me an appointment date of 9th April. It is a standard two week wait on these referrals, which I think is a very impressive policy really given how busy they must be.
So far only my husband Dan knew about all this. I wasn't planning on telling anyone if the tests turned out ok. I did tell one of my friends too. She had been through these sorts of tests before - thankfully with a benign result - and knew the ropes, as well as being a fantastic friend generally. She immediately offered to come with me on 9th April.
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