I had a needle biopsy for the breast lump on 12th December, along with a physical exam and an ultrasound of it. Usually, they offer a 'one-stop shop' with the results given on the same day, but due to a meeting that the radiologist was called away to that afternoon, I had to wait 16 days to be given the biopsy results yesterday morning. The results are..."conflicting". Whilst the biopsy appears to show no abnormal cells, it turns out the consultant felt a suspicious mobile lymph node during the physical exam. He didn't tell me at the time; I only found out yesterday when the registrar giving me the results referred to "the lump in your armpit". What!! The registrar explained that, if I had just the lump on its own, they would put it down as a fibroadenoma based on my age, the clinical signs and the biopsy result. But there shouldn't be a lump in my armpit so, given my history, they want to be on the safe side and do more tests.
So what does this mean? According to the piece of paper I was given, it means this:
USS + FNA
F34 Hx of malignant melanoma, WLE + groin dissection 4/12.
O/E R breast P3 Lump + axcillary mobile LN.
? Recurrence
Which is doctor speak for:
Request for ultrasound scan and fine needle aspiration
Female aged 34, history of malignant melanoma, wide local excision and groin dissection in April.
On examination, right breast has a lump defined as 'uncertain' and a mobile lymph node in the armpit.
Is this is a recurrence of melanoma?
So, once more, I await tests under the two-week rule for cancer. Again, I could have had it all done the same day but again the radiologist wasn't available, this time because it's the Christmas holidays. I have a feeling, though, that this will all be fine. I've done a lot of reading, and clinically, all the signs are pointing to a fibroadenoma, or non-cancerous tumour.
On this day last year, I saw my GP who told me she would be surprised if I didn't have cancer. How ironic that I go into 2013 as I went into 2012...waiting for a biopsy to officially find out. On the up-side, since I've decided the 29th December is my official Cancerversary, I bought myself a spa treatment. And it was very pleasant indeed!
Saturday, 29 December 2012
Sunday, 2 December 2012
"Hopefully, this will be my last entry to this blog..."
...and if wishes were horses, etc etc.
When I was in the bath last week, I dutifully did my monthly squish of round all the scars and around my groin and armpit lymph nodes, only to find a lump. A large, hard lump in my right breast...the same side the melanoma was on. It tends to stay on one side of the body. One phone call and 48 hours later, I was sat in the GP's office whilst two lovely lady doctors examined me. One of them was Catherine, the same GP to whom I went almost 11 months ago to the day, after discovering cancer mole.
"It doesn't feel soft enough to be a cyst," she said, with a neutral face that belied any concern, "but I don't want to make any guesses because it could be something or it could be nothing. So I'll make you a referral to the breast clinic under the two-week rule, just to get it scanned and biopsied."
The two-week rule exists both for melanoma and for breast cancer. The scan she referred to is a mammogram, ultrasound, or both. The biopsy will hopefully be a fine needle biopsy, whereby a fine needle (unsurprisingly) is guided into the lump and a small sample of cells withdrawn for analysis. It's possible, she said, that I will be given the results the same day.
"You're not going away for Christmas, are you?" she asked.
"Yes, actually," I replied, "I'm going to Moscow on the 14th of December for five days."
Her neutral mask dropped for a split second.
"Well, I'm sure they'll be able to work around it, they're very good like that. But, er, if they do need to proceed with immediate treatment, I would take it if I were you. You just need to be prepared to cancel the trip. We can write you an insurance note if need be."
Which would be great if I had insurance, but I don't. I got an online quote: "OH! You've had cancer recently?!" it trilled at me. "Moscow for five days post-cancer? That'll be £197 please." On your bike, Aleksandr Meerkat.
So I have an appointment on Wednesday 12th December at our local breast clinic. Hopefully I will get the results the same day. It appears to be a three-horse race, with the contenders as follows:
Horse 1 - Benign Bob. It could well be a fatty lump (no problem, leave it be) or a fibroadenoma, which is a benign tumour. Options are watch and wait, or a lumpectomy under general anaesthetic. Let's hope this horse wins.
Horse 2 - Bog Off Breast Cancer. Did I inadvertantly write "cancer" on my Christmas wish list instead of "kindle"? Obviously we don't want this. But it's not as bad as:
Horse 3 - Brown Bread Fred. AKA melanoma metastasis. Because that would mean the melanoma has spread; I'd be stage 4, terminal, and effectively dead. Sorry, I can dress it up for you if you like but that is the reality. There are drugs that prolong life after stage 4 MM diagnosis, but they do not cure it. There is no cure. It kills you, and usually within a couple of years.
That all may sound melodramatic, and the odds are that it's something benign. At this point, I would even take breast cancer with relative ease. I don't believe in God, but I have started to bargain in my head for it not to be a met. I know I'm not alone, and there are millions of other former cancer patients who go through this internal worry whenever they find a lump or a new mole. It sucks. But most of the time, it turns out to be nothing and it is just hyper-vigilism that meant they found it in the first place. So there we go. An update will follow when I have one.
When I was in the bath last week, I dutifully did my monthly squish of round all the scars and around my groin and armpit lymph nodes, only to find a lump. A large, hard lump in my right breast...the same side the melanoma was on. It tends to stay on one side of the body. One phone call and 48 hours later, I was sat in the GP's office whilst two lovely lady doctors examined me. One of them was Catherine, the same GP to whom I went almost 11 months ago to the day, after discovering cancer mole.
"It doesn't feel soft enough to be a cyst," she said, with a neutral face that belied any concern, "but I don't want to make any guesses because it could be something or it could be nothing. So I'll make you a referral to the breast clinic under the two-week rule, just to get it scanned and biopsied."
The two-week rule exists both for melanoma and for breast cancer. The scan she referred to is a mammogram, ultrasound, or both. The biopsy will hopefully be a fine needle biopsy, whereby a fine needle (unsurprisingly) is guided into the lump and a small sample of cells withdrawn for analysis. It's possible, she said, that I will be given the results the same day.
"You're not going away for Christmas, are you?" she asked.
"Yes, actually," I replied, "I'm going to Moscow on the 14th of December for five days."
Her neutral mask dropped for a split second.
"Well, I'm sure they'll be able to work around it, they're very good like that. But, er, if they do need to proceed with immediate treatment, I would take it if I were you. You just need to be prepared to cancel the trip. We can write you an insurance note if need be."
Which would be great if I had insurance, but I don't. I got an online quote: "OH! You've had cancer recently?!" it trilled at me. "Moscow for five days post-cancer? That'll be £197 please." On your bike, Aleksandr Meerkat.
So I have an appointment on Wednesday 12th December at our local breast clinic. Hopefully I will get the results the same day. It appears to be a three-horse race, with the contenders as follows:
Horse 1 - Benign Bob. It could well be a fatty lump (no problem, leave it be) or a fibroadenoma, which is a benign tumour. Options are watch and wait, or a lumpectomy under general anaesthetic. Let's hope this horse wins.
Horse 2 - Bog Off Breast Cancer. Did I inadvertantly write "cancer" on my Christmas wish list instead of "kindle"? Obviously we don't want this. But it's not as bad as:
Horse 3 - Brown Bread Fred. AKA melanoma metastasis. Because that would mean the melanoma has spread; I'd be stage 4, terminal, and effectively dead. Sorry, I can dress it up for you if you like but that is the reality. There are drugs that prolong life after stage 4 MM diagnosis, but they do not cure it. There is no cure. It kills you, and usually within a couple of years.
That all may sound melodramatic, and the odds are that it's something benign. At this point, I would even take breast cancer with relative ease. I don't believe in God, but I have started to bargain in my head for it not to be a met. I know I'm not alone, and there are millions of other former cancer patients who go through this internal worry whenever they find a lump or a new mole. It sucks. But most of the time, it turns out to be nothing and it is just hyper-vigilism that meant they found it in the first place. So there we go. An update will follow when I have one.
Saturday, 13 October 2012
Three months on...
I can't believe it's been over three months since I last updated, and I didn't want anybody reading this to think something had happened to me. I've had the remaining dodgy moles removed (somewhere between a local excision and a wide local excision, with a 1cm margin and 7cm length.) The biopsy results were fine so all is well with me. I am keeping a cautious eye out for suspicious lumps or lesions that would indicate more tumours, but life is back to normal now. Hopefully, this will be my last entry to this blog.
Sunday, 8 July 2012
Nope.
After numerous blood tests, The Christie didn't bother to get back to me about the trial. I ended up chasing them and was finally told no, I'm not eligible. I don't make one of the proteins they need. Fair enough, I'm glad I offered.
I have an appointment with Dr Stewart on Thursday. She'll give me an all-over exam and let me know which moles she wants to remove. I know there's that one on my leg that needs cutting out, and I suspect a couple more too. Oh well, I'd rather be covered in scars than in tumours.
I have an appointment with Dr Stewart on Thursday. She'll give me an all-over exam and let me know which moles she wants to remove. I know there's that one on my leg that needs cutting out, and I suspect a couple more too. Oh well, I'd rather be covered in scars than in tumours.
Sunday, 3 June 2012
To trial or not to trial
I haven't written much recently because there hasn't been much to say. Everything is getting back to normal for me really. I've started a phased return to work, the lymphedema isn't too problematic, neither is the neuralgia. The scars have healed well and the physio is doing its job so anybody who didn't know probably wouldn't notice a thing wrong with me.
At one of my consultancies several weeks ago, I enquired about taking part in a clinical trial. They are basically experiments with new medicines and therapies that need testing. First they are tested on animals and then when they're deemed safe, tests on humans begin.A clinical trial has several phases, the first being where they're testing dose escalation and safety issues on a few people and it is considered the most dangerous. The last phase normally involves several thousand people over a few years.
I had an appointment at The Christie last week where they're running the trial I enquired about. It's a Phase 2 trial testing a new immunotherapy drug. In a nutshell, the drug changes your DNA and enables you to make a new protein which may reduce the efficiency of melanin-making cells. An information video is here. If I am accepted on the trial (I need to have the right antigens in my body) it would involve 14 visits over 7 months. I would have 10 injections of the drug into my arm and leg via a device that is also being tested: immediately after each shot is delivered, the device would insert four thin wires into my muscles and give me a strong electric shock. This is to maximise the uptake of vaccine into my muscle. I'd also have another two CT scans, an eye test and regular bloods plus follow-up phone calls for five years.
There are pros and cons to taking part in the trial. The pros include that I get extra checks, that if the medicine works to reduce melanoma instances, I'd be looked on favourably for it, and the trial is being ran by one of the foremost melanoma experts in Europe.
The cons are that I don't really want to spend so much more time in hospital when I am so close to normality and, of course, the lack of appeal in being injected then electrocuted!
The main factor for me, though, is a moral one. I do not believe humans should test medicine for humans on animals. I believe that if we want to find cures for our illnesses, we should be willing to take the risks that come with creating new medicines. In this case, the risks would include the usual flu-like, fever stuff, bleeding, scarring, scabs and so on. They also include vitiligo and inflammation of the eyeball resulting in temporary or permanent blindness. Only 22 people in the UK will be asked to take part, which to my mind is pretty frightening and there is no payment for this. It is purely voluntary.
A little bit of me hopes I'm not eligible. Electric shocks and painful scabs aren't something I would usually volunteer for. But, I feel so strongly about my beliefs around testing that I do want to be accepted. I want to be useful and I want to put my money where my mouth is. I dislike using medicines knowing they've been tested on animals but I concluded a long time ago that I'd be no good to anyone dead. This way I can hopefully make a difference, even if it is going to hurt. I will find out in three weeks or so whether I'm on the trial so I'll update and let you know.
At one of my consultancies several weeks ago, I enquired about taking part in a clinical trial. They are basically experiments with new medicines and therapies that need testing. First they are tested on animals and then when they're deemed safe, tests on humans begin.A clinical trial has several phases, the first being where they're testing dose escalation and safety issues on a few people and it is considered the most dangerous. The last phase normally involves several thousand people over a few years.
I had an appointment at The Christie last week where they're running the trial I enquired about. It's a Phase 2 trial testing a new immunotherapy drug. In a nutshell, the drug changes your DNA and enables you to make a new protein which may reduce the efficiency of melanin-making cells. An information video is here. If I am accepted on the trial (I need to have the right antigens in my body) it would involve 14 visits over 7 months. I would have 10 injections of the drug into my arm and leg via a device that is also being tested: immediately after each shot is delivered, the device would insert four thin wires into my muscles and give me a strong electric shock. This is to maximise the uptake of vaccine into my muscle. I'd also have another two CT scans, an eye test and regular bloods plus follow-up phone calls for five years.
There are pros and cons to taking part in the trial. The pros include that I get extra checks, that if the medicine works to reduce melanoma instances, I'd be looked on favourably for it, and the trial is being ran by one of the foremost melanoma experts in Europe.
The cons are that I don't really want to spend so much more time in hospital when I am so close to normality and, of course, the lack of appeal in being injected then electrocuted!
The main factor for me, though, is a moral one. I do not believe humans should test medicine for humans on animals. I believe that if we want to find cures for our illnesses, we should be willing to take the risks that come with creating new medicines. In this case, the risks would include the usual flu-like, fever stuff, bleeding, scarring, scabs and so on. They also include vitiligo and inflammation of the eyeball resulting in temporary or permanent blindness. Only 22 people in the UK will be asked to take part, which to my mind is pretty frightening and there is no payment for this. It is purely voluntary.
A little bit of me hopes I'm not eligible. Electric shocks and painful scabs aren't something I would usually volunteer for. But, I feel so strongly about my beliefs around testing that I do want to be accepted. I want to be useful and I want to put my money where my mouth is. I dislike using medicines knowing they've been tested on animals but I concluded a long time ago that I'd be no good to anyone dead. This way I can hopefully make a difference, even if it is going to hurt. I will find out in three weeks or so whether I'm on the trial so I'll update and let you know.
Tuesday, 8 May 2012
"Hello Trouble"
That's how Mr Brackley greeted me when I saw him this afternoon. It turns out that 75% of lymphadenectomy patients experience no post-op complications at all. So not only am I in the minority with this, but in a very big way because I seem to have had everything known to man.
He confirmed that the infection I had started as cellulitis and then got into my bloodstream and caused septicaemia, which led to septic shock. I come off the resulting antibiotics and antiemetics this week so hopefully I'll feel more human and less vomity/sleepy all the time. I am still left with three complications to deal with:
Lymphedema
Now that the drain is out, there has been some lymphedema swelling although not as much as I'd feared. The tissue in my leg is very inflamed and swollen too, though, so there's no point aspirating my leg as nothing would come out. Hopefully it will settle down soon and my body will reabsorb any leftover lymph because it's a very uncomfortable feeling in my whole upper leg, like my skin is two sizes too small for me. My whole right leg feels really heavy and cumbersome, like there are training weights tied to it, and anything requiring balance is now harder. At least it's only mild in my case. Severe lymphedema looks like this (note THIS IS NOT ME!) and it's what I was worried about:
Movement
Apparently by this stage I should have almost regained the full range of motion. Instead, I can only lift my leg about 10cm off the floor. Stairs are a huge challenge for me, as is getting up and down from seats, and in and out of cars. So today I've been referred to a physiotherapist for further work. Rachel said that if I'm in pain, I won't push my leg to work hard and she's right. I need to really put the effort in here. Mr Brackley thinks the nerve that controls movement was damaged in the operation; it remains to be seen how permanent that damage is. This is the one that pisses me off the most; I need to be able to climb mountains, let alone stairs.
So that's where I am really. I'll report back periodically but, touch wood, the worst is behind me. Just one little op left to take off the remaining dodgy mole plus any others that are looking iffy. In hindsight, and it's a very personal decision, I wouldn't have had this operation and would have taken the 95% chance of the remaining lymph nodes being cancer-free, which indeed they were. It's such a big operation with potentially lifelong complications that I wasn't ever warned of. It sucks that removing the nodes is currently the only way of establishing their cancer status, although it's great that sentinel lymph node biopsies are offered these days. At least most people won't need this operation because their SLNB will be clear.
For now, onwards, upwards, and hopefully no recurrences.
He confirmed that the infection I had started as cellulitis and then got into my bloodstream and caused septicaemia, which led to septic shock. I come off the resulting antibiotics and antiemetics this week so hopefully I'll feel more human and less vomity/sleepy all the time. I am still left with three complications to deal with:
Lymphedema
Now that the drain is out, there has been some lymphedema swelling although not as much as I'd feared. The tissue in my leg is very inflamed and swollen too, though, so there's no point aspirating my leg as nothing would come out. Hopefully it will settle down soon and my body will reabsorb any leftover lymph because it's a very uncomfortable feeling in my whole upper leg, like my skin is two sizes too small for me. My whole right leg feels really heavy and cumbersome, like there are training weights tied to it, and anything requiring balance is now harder. At least it's only mild in my case. Severe lymphedema looks like this (note THIS IS NOT ME!) and it's what I was worried about:
Pain
The shooting/burning/electric shock nerve pains went with my drain and in its place is just a dull throbbing permanent ache across my right groin and down my thigh. It's definitely preferable to what preceded it but apparently by this stage I shouldn't have any pain at all. So I'm trying one more week on ibuprofen and paracetamol before moving onto the proper prescription gear that comes with a list of possible side effects longer than my arm. I'm normally not one for any pain killers unless absolutely necessary but Rachel the Macmillan nurse pointed out that I need to conquer it in order to overcome problem number 3: loss of movement.Movement
Apparently by this stage I should have almost regained the full range of motion. Instead, I can only lift my leg about 10cm off the floor. Stairs are a huge challenge for me, as is getting up and down from seats, and in and out of cars. So today I've been referred to a physiotherapist for further work. Rachel said that if I'm in pain, I won't push my leg to work hard and she's right. I need to really put the effort in here. Mr Brackley thinks the nerve that controls movement was damaged in the operation; it remains to be seen how permanent that damage is. This is the one that pisses me off the most; I need to be able to climb mountains, let alone stairs.
So that's where I am really. I'll report back periodically but, touch wood, the worst is behind me. Just one little op left to take off the remaining dodgy mole plus any others that are looking iffy. In hindsight, and it's a very personal decision, I wouldn't have had this operation and would have taken the 95% chance of the remaining lymph nodes being cancer-free, which indeed they were. It's such a big operation with potentially lifelong complications that I wasn't ever warned of. It sucks that removing the nodes is currently the only way of establishing their cancer status, although it's great that sentinel lymph node biopsies are offered these days. At least most people won't need this operation because their SLNB will be clear.
For now, onwards, upwards, and hopefully no recurrences.
Tuesday, 1 May 2012
Home Sweet Home....again
Just in brief, coz I'm a bit tired, I am home with two sets of antibiotics, strong pain killers and anti-sickness tablets to counterbalance the side effects of the anti-bs.
I had the drain taken out yesterday afternoon and it was surprisingly pain-free. The tube itself easily slid out when the stitch was cut, and there's just a bit of burning/stinging pain now around the drain hole which I'm told is normal. I have a stoma bag over the hole to catch any drips, but that will probably come off on Thursday as there's nothing coming out. Now that the lymph fluid isn't being drained out, though, it's become evident already that my body's not reabsorbing it. My abdomen has a fluid pocket on the right-hand side, a pocket on my inner thigh, and my right upper leg circumference is already measuring 8cm bigger in any given place than the other leg. Some swelling is normal but it remains to be seen whether it'll stay like this or whether it'll bloat up into a massive elephant leg.
Either way I'm back at Whiston hospital on Thursday and will likely have fine needle aspiration into the fluid pockets. I am so sick of needles now. My arms are really bruised from all the cannulas, injections, blood tests and failed cannulas (flushing, i.e. injecting saline, into a cannula that's not properly in the vein causes a huge stinging bruise thus):
I will ask if there's a topical local anaesthetic cream I can have before I'm aspirated. Going to bed soon and keeping everything crossed for minimal swelling tomorrow.
In some good news, I'm allowed to drive now the drain's out - a step closer to normality. I'll give it a go round the block tomorrow when my husband can come with me, just in case cancer leg won't behave itself.
I had the drain taken out yesterday afternoon and it was surprisingly pain-free. The tube itself easily slid out when the stitch was cut, and there's just a bit of burning/stinging pain now around the drain hole which I'm told is normal. I have a stoma bag over the hole to catch any drips, but that will probably come off on Thursday as there's nothing coming out. Now that the lymph fluid isn't being drained out, though, it's become evident already that my body's not reabsorbing it. My abdomen has a fluid pocket on the right-hand side, a pocket on my inner thigh, and my right upper leg circumference is already measuring 8cm bigger in any given place than the other leg. Some swelling is normal but it remains to be seen whether it'll stay like this or whether it'll bloat up into a massive elephant leg.
I will ask if there's a topical local anaesthetic cream I can have before I'm aspirated. Going to bed soon and keeping everything crossed for minimal swelling tomorrow.
In some good news, I'm allowed to drive now the drain's out - a step closer to normality. I'll give it a go round the block tomorrow when my husband can come with me, just in case cancer leg won't behave itself.
Monday, 30 April 2012
Update
Just a quick update to say I'm on the mend. The drain is still in place for the time being, with no blood in it any more. I'm on a strong cocktail of intravenous antibiotics, and feeling good bar a little sickness and residual pain. Now up to 18 needles.
Friday, 27 April 2012
Scary scary day
This won't be too long as it's mostly just for my reference but in a nutshell, I felt a bit headachy and off-colour on Wednesday. Went for my drain change on Thursday morning and during it, started to get bad leg pain. An hour later got very dizzy and nauseous. Two hours later I had a full on fever (head boiling, body freezing), nausea, rigours, lips blue, struggling to breathe, forgetting simple words, blinding headache, very severe stabbing pain in leg and groin. By 4pm it was evident I needed an ambulance so my lovely husband stayed very calm and did a brill job of getting me help.
When the paramedics arrived, they did my vitals and they were pretty bad. Temperature was 39.3C, pulse was 150bpm, and blood pressure had dropped to 80/45. Got rushed to Wigan A&E, had chest x-ray, pelvic x-ray, arterial and venous bloods, urine sample, tests for meningitis and 3 bags of saline and antibiotics. Cancer leg was drawn on to the indicate infected area around the drain, which was bright red and turgid. Drain bag was full of blood and tissue, around 600ml since 12pm.
After a terrible night's no-sleep thanks to noisy nurses again, I got transferred back to Whiston. Needed a wheelchair for even toilet trips as I'm in too much pain to walk but vitals were a lot better. Another chest x-ray, more blood and urine samples, more meningitis tests, another bag of saline and 2 bags of antibiotics. I have been stuck with 12 needles in the last 30 hours and have officially run out of veins - they want to put a bigger cannula in but there's nowhere left. The nurse tried 3 veins on my wrists but it hurt too much and they just don't work.
Communication isn't great so I'm unclear on what's causing the infection and whether my drain will come out. I think it's the source. The consultant and drainage nurse both don't work weekends so I'll be stuck here til at least Monday. All signs point to severe sepsis. We caught it early though before the point of brain damage/organ failure.
As I understand it, future plans include a pelvic CT, an ultrasound to rule out appendicitis, maybe a spinal tap to fully rule out meningitis and daily blood tests. Embarrassment of the day yesterday - discussing bowel movements in front of my husband. Embarrassment of the day today - narrowly missing a helpful porter's shoes when vomiting from my wheelchair.
At least I have a private room this time round and over my dead body are they kicking me out of it!
When the paramedics arrived, they did my vitals and they were pretty bad. Temperature was 39.3C, pulse was 150bpm, and blood pressure had dropped to 80/45. Got rushed to Wigan A&E, had chest x-ray, pelvic x-ray, arterial and venous bloods, urine sample, tests for meningitis and 3 bags of saline and antibiotics. Cancer leg was drawn on to the indicate infected area around the drain, which was bright red and turgid. Drain bag was full of blood and tissue, around 600ml since 12pm.
After a terrible night's no-sleep thanks to noisy nurses again, I got transferred back to Whiston. Needed a wheelchair for even toilet trips as I'm in too much pain to walk but vitals were a lot better. Another chest x-ray, more blood and urine samples, more meningitis tests, another bag of saline and 2 bags of antibiotics. I have been stuck with 12 needles in the last 30 hours and have officially run out of veins - they want to put a bigger cannula in but there's nowhere left. The nurse tried 3 veins on my wrists but it hurt too much and they just don't work.
Communication isn't great so I'm unclear on what's causing the infection and whether my drain will come out. I think it's the source. The consultant and drainage nurse both don't work weekends so I'll be stuck here til at least Monday. All signs point to severe sepsis. We caught it early though before the point of brain damage/organ failure.
As I understand it, future plans include a pelvic CT, an ultrasound to rule out appendicitis, maybe a spinal tap to fully rule out meningitis and daily blood tests. Embarrassment of the day yesterday - discussing bowel movements in front of my husband. Embarrassment of the day today - narrowly missing a helpful porter's shoes when vomiting from my wheelchair.
At least I have a private room this time round and over my dead body are they kicking me out of it!
Tuesday, 24 April 2012
The end is in sight...
I got my biopsy results this afternoon - NED, or No Evidence of Disease. Meaning none of the 11 removed lymph nodes had any cancer in them. Nor did the two removed moles, although one was classed as dysplastic meaning it was a little more likely to become cancerous than a regular mole. I still have several others on my body which I hope to have removed at some point.
I know I'm meant to be really happy, this is the news I wanted. My friends and family are ecstatic. I pictured this moment a thousand times, and in each one I was overjoyed. But for some reason I just feel numb and empty. Maybe because I know this will never be truly over. Melanoma has no remission, as such. Only NED. The recurrence rate is high and there is no real cure. Hospital visits will be a part of my life for the foreseeable future, as will constant vigilance of every change to my skin. There is no forgetting and putting it out my mind from now on.
I know there's no 'normal' reaction to any of this, but even I have taken myself by surprise. Maybe tomorrow it will all sink in, but for now I don't feel a single thing.
Monday, 16 April 2012
Groin dissection scar
Finally the dressings are off! The black is the line of my underwear, so you can see it goes from just above my hip bone across the groin and down my thigh. It's about 30cm long at the moment but should shrink down a little. There's surprisingly little bruising compared with the local wide excision.
Sunday, 15 April 2012
Drain, the bane
I've had this drain in for two weeks now, and you'd think my body would figure out that there are no lymph nodes in my groin anymore so let's send the fluid along to the next set of nodes. But no. It seems my body is lazy and will just continue to pump out its lymph fluid into the nice convenient drain that's sitting atop my leg. The problem with this is that I can only have the drain for two more weeks before it has to come out due to the ever-increasing risk of infection. Ideally, my body should be putting out less than 50ml a day at that point, so each evening at 6pm I have dutifully emptied and measured the day's takings, silently hoping it will be lower than the previous day's figure. Sadly, half the time it isn't. I thought I'd had a breakthrough yesterday when it was 197ml - my first less-than-200 result. But nope, today we're back up to 236ml.
Also, my eyes and brain are so bored. My best friends came to see me yesterday whilst my husband's away, and that was nice but good god am I fed up with being in the same rooms. The only places I've been in the last 14 days are home and hospital. Even my daily trudges around the block have got very boring. I am a person who goes out, travels, sees things. Don't get me wrong, home is definitely a lot more palatable than hospital but it's still very very boring. Sorry for complaining. I am tiring myself with all this whinging.
On the plus side, there has definitely been less instance of nerve pain in the last 48 hours. As a reward, I have decided to entertain myself by learning the lyrics to Informer by Snow:
Also, my eyes and brain are so bored. My best friends came to see me yesterday whilst my husband's away, and that was nice but good god am I fed up with being in the same rooms. The only places I've been in the last 14 days are home and hospital. Even my daily trudges around the block have got very boring. I am a person who goes out, travels, sees things. Don't get me wrong, home is definitely a lot more palatable than hospital but it's still very very boring. Sorry for complaining. I am tiring myself with all this whinging.
On the plus side, there has definitely been less instance of nerve pain in the last 48 hours. As a reward, I have decided to entertain myself by learning the lyrics to Informer by Snow:
Friday, 13 April 2012
Telling the loved ones
My parents came to visit last night and I told them everything.
I'd been making myself sick all day with worry, and I'd gone back and forth between disclosure and hiding it - from rehearsing sentences in my head, to taping the drain tube and bag to my leg to disguise it so they wouldn't have to find out. In the end, my gut feeling was that I would regret it if they left none the wiser so I took a deep breath and started with "You'll notice I have a tube coming out the bottom of my pants. It's a surgical drain".
They did take it quite well and I was questioning whether I should have told them sooner but this is just the way I cope with things, quietly and alone. Had the cancer been contained in my leg, I wouldn't have needed this operation and nobody would have needed to know. They're pleased I sought treatment immediately and glad that I took the doctor's advice on treatment rather than go down the route of blissful ignorance like a friend of theirs did, which ultimately claimed his life. My dad's kindly going to give me a lift to the hospital next Thursday for my weekly drain check and dressing change.
As for how I'm doing, I'm okay. The bruising in my leg is really starting to become apparent and the swelling isn't showing any sign of abating, nor is the drain yielding less fluid - averaging 230ml a day. This isn't good because I can only have the drain for a maximum of four weeks in total and really it needs to be producing less than 50mls a day when it comes out. In other words, I have two weeks for it to reduce its output by 80% or more.
If this doesn't happen, the drain will be removed and one of two things will happen; my body will reabsorb the fluid itself or my leg will swell. Given that this has happened previously, it will likely happen again. The treatment for this is to have a large needle inserted into my leg and to aspirate the fluid out manually. Dunno about you, but I can think of more fun things to do with my time.
I found out too that I will get my results for the removed moles and the lymph nodes on April 24th. Please please let it be good news. I am most afraid of finding out one of the moles is cancerous and having to go through all this again on the other leg. If 1-2 of the removed lymph nodes show signs of cancer, there will be little or no further treatment. If 3 or more are affected, I will undergo radiotherapy.
I'd been making myself sick all day with worry, and I'd gone back and forth between disclosure and hiding it - from rehearsing sentences in my head, to taping the drain tube and bag to my leg to disguise it so they wouldn't have to find out. In the end, my gut feeling was that I would regret it if they left none the wiser so I took a deep breath and started with "You'll notice I have a tube coming out the bottom of my pants. It's a surgical drain".
They did take it quite well and I was questioning whether I should have told them sooner but this is just the way I cope with things, quietly and alone. Had the cancer been contained in my leg, I wouldn't have needed this operation and nobody would have needed to know. They're pleased I sought treatment immediately and glad that I took the doctor's advice on treatment rather than go down the route of blissful ignorance like a friend of theirs did, which ultimately claimed his life. My dad's kindly going to give me a lift to the hospital next Thursday for my weekly drain check and dressing change.
As for how I'm doing, I'm okay. The bruising in my leg is really starting to become apparent and the swelling isn't showing any sign of abating, nor is the drain yielding less fluid - averaging 230ml a day. This isn't good because I can only have the drain for a maximum of four weeks in total and really it needs to be producing less than 50mls a day when it comes out. In other words, I have two weeks for it to reduce its output by 80% or more.
If this doesn't happen, the drain will be removed and one of two things will happen; my body will reabsorb the fluid itself or my leg will swell. Given that this has happened previously, it will likely happen again. The treatment for this is to have a large needle inserted into my leg and to aspirate the fluid out manually. Dunno about you, but I can think of more fun things to do with my time.
I found out too that I will get my results for the removed moles and the lymph nodes on April 24th. Please please let it be good news. I am most afraid of finding out one of the moles is cancerous and having to go through all this again on the other leg. If 1-2 of the removed lymph nodes show signs of cancer, there will be little or no further treatment. If 3 or more are affected, I will undergo radiotherapy.
Tuesday, 10 April 2012
PMA
After waking up at 12.30am screaming due to yet more nerve pain, and having to get my lovely husband to help me out of bed a millimetre at a time, I have decided: screw this. Not only did he not sleep the entire night because he is so worried and hates seeing me in pain, but I have subconsciously really slowed down my movements because I am so afraid of setting the pain off.
Screw it. I am not letting this affect me and my family in this way. I refuse to set mental barriers for myself because of fear.
So today I have been climbing stairs in the normal fashion rather than leading with left leg up and right leg down. I have walked a mile and made myself not have any type of limp. I have vacuumed the whole house and bent down to pick things up, and I have sat out with my beloved chickens on my garden chair instead of standing as I have been doing. And you know what? It's been fine. I had one 10-second burst of quite bad pain when I got up out the chair but that's it. I am not going to let this change the way I do things. I am f***ed if I will let it prevent my husband from sleeping. I am done with the last seven days of fear and worry over this nerve pain. If it happens then it happens but I won't be cowed by it. Positive Mental Attitude!
Screw it. I am not letting this affect me and my family in this way. I refuse to set mental barriers for myself because of fear.
So today I have been climbing stairs in the normal fashion rather than leading with left leg up and right leg down. I have walked a mile and made myself not have any type of limp. I have vacuumed the whole house and bent down to pick things up, and I have sat out with my beloved chickens on my garden chair instead of standing as I have been doing. And you know what? It's been fine. I had one 10-second burst of quite bad pain when I got up out the chair but that's it. I am not going to let this change the way I do things. I am f***ed if I will let it prevent my husband from sleeping. I am done with the last seven days of fear and worry over this nerve pain. If it happens then it happens but I won't be cowed by it. Positive Mental Attitude!
Monday, 9 April 2012
My top tips for hospital stays
- Bring a laptop/dvd player and plenty to watch for when you're in bed and a portable mp3 player for when you go on exercise walks. Don't underestimate how bored you will get!
- Download podcasts to listen to in the early days when your eyes can't concentrate on TV and films. Comedy works best for me.
- Bring slippers that you can put on without having to bend down.
- Food has to be bland for medical reasons so get salt, pepper and sugar sachets from the canteen to flavour it up.
- If you want a private room, just ask. They are SO much better than wards.
- Pull down your hospital gown at the front before you shuffle up the bed, otherwise you'll end up choking yourself.
- If you can't shower or bathe, bring perfume and shampoo so you feel clean and nice as possible.
- Check your charts at the foot of the bed daily.Ask that they correct any wrong information and notes (in my experience, a lot of it is incorrect and they will write down answers without having actually asked you the question).
- Ask until your questions are answered. It's your health; don't let them fob you off or ignore you.
- Ask your visitors to be specific about when they're coming. It's really disappointing to think they're arriving at 2pm only for them to get there at 5pm. To them it's not a big deal but to you it can really affect your mood for that day.
- Have a bit of spare change in your bag for if your visitor doesn't leave on time and their parking charge runs over.
Home Sweet Home
Finally yesterday I came home. I won't go into all the ridiculous details, suffice to say I found out they weren't planning to discharge me til next Wednesday when the drainage nurse was back from annual leave, and then after being told I could go at 9am we ended up having to wait 6 hours for some antibiotics to be brought up two floors.
The drain is intact and still working, yielding around 400ml a day of lymph fluid (although it periodically stops and my leg swells pretty rapidly).
The nerve pain in my leg is getting worse both in frequency and in acuteness. It woke me up crying in the night. I have discovered through researching that its medical name is peripheral neuropathy (information here) and that it's not massively uncommon as a complication or side effect in both cancer drugs and surgery. Given that information, it is massively surprising and disappointing that I have had to find this out myself, and that the on-call doctor didn't realise it was nerve pain causing the agony during vaccing. It seems that it is one or more of three things:
1) A temporary effect caused by the placing of the drain which will be alleviated when the drain's removed
2) A side effect caused by swelling and bruising pressing on a nerve which, again, will subside as it heals
3) Permanent damage which will have to be controlled by medication or further surgery
I am trying to be positive but having a little dip of my toe into 'why me' territory at the moment as it seems again I have been very unlucky in experiencing this complication.
Also, my parents want to visit me one evening this week. How the hell do I hide that I can't get up on my own, or that I have a whopping long tube coming out of my pants into a big 2 litre drain bag. Do I tell them? How do you tell your elderly parents that their child has cancer?
Saturday, 7 April 2012
From hospital - Saturday
As I said yesterday, hospitals are lonely places and the novelty of visiting someone in hospital soon wears off on most people. In my case, barely anyone knows anyway so I'm not exactly doing a lot of entertaining in the first place. My husband is coming to see me each day but he seems to have a lot of things to do before he leaves the house. Admittedly some of them are things for me like putting new TV shows on a memory stick or buying me snacks, and some of them are household chores, but a hospital hour feels like a day and six days in here can quickly bring down even the cheeriest person.
I was feeling very despondent this morning when I realised that my prediction yesterday had come true - my drainage tube had become blocked by debris. It seemed to be the part inside my leg so I couldn't even fish it out with things I had lying around like I had done previously (if any of my medics are reading this, I absolutely definitely did NOT dismantle my drain and fish bits of flesh out myself).
As it's a Saturday on a bank holiday weekend, the hospital is on skeleton staff and minimal patient intake, and rounds were delayed by several hours due to priority trauma cases coming in. So I didn't see a doctor til midday and when I explained that a) my drain had become blocked and b) my nerve was flashing intense pain again he said he didn't really know what to do and would consult his senior. He and the nurse both thought maybe my leg wasn't producing fluid anymore and that's why nothing had emptied out, but I knew it wasn't true. It doesn't suddenly go from excreting 300ml of lymph to zero, and even a 20-minute walk didn't produce a drop. So I knew it was a blockage.
After a couple of hours of lying in bed waiting for the doctor to come back with a solution and feeling sorry for myself, I decided to do something about it. Based on the principle of unblocking a toilet (rapid pressure/depressure to create a suction vacuum) I applied the same to my drain tube - essentially squeezing and releasing very quickly. And...SUCCESS!
A big clump of tissue shot through, followed by about 150 ml of bright red fluid. After dancing a celebratory jig, I decided to keep it moving by going for a very long walk. I have figured previously that 4 laps of the floor is half a mile so I decided to do a full mile across three floors.
I moved from my floor, 3, to floor 2 (too purple and full of pregnant ladies) to the ground floor. And this is where I found a place called The Sanctuary. Far from being a spa like I first thought, it is a multi-faith quiet room complete with books of remembrance for babies and children.
Good lord, has it put it in perspective. It's mind-blowing to realise how many fetuses don't make it out the womb alive, and how many babies don't make it to toddlers, toddlers to children, children to teenagers. Page upon page, book upon book, some with photos of their deceased child, some just a sentence but all reflecting the heartbreak of at least one other person.
I am very lucky to be in this position, really.
(In the full sense of irony, as I was writing how lucky I am, I was moved out of my private room back into the ward next to a woman who is snoring and just broke wind very loudly. GET ME OUT OF HERE!).
Friday, 6 April 2012
Masterchef - the hospital edition
I will update this every day with my new meals.
The menu is quite comprehensive here and I like that they draw daft things onto your order to make you smile (I'm in bed 10C):
Also, the eggs are free-range!
Here is my evaluation of hospital food (note I did start an evaluation but I am crap at writing about food. I don't recognise meals as stodgy or rich or light. I can't identify whether it needed a different ingredient. To me, meals are either good, edible or bad. So without further a do, here is my rating out of ten):
Macaroni cheese - 10/10
Custard - 0/10 (I later discovered adding sugar sachets to it makes it a lot better)
Syrup sponge - 5/10
Omelette and dauphinoise potatoes - 7/10
Bread and butter pudding - 3/10
Tomato and cheese pasta - 8/10
Rice pudding - 4/10
Mushroom and pea risotto - 6/10
Rhubarb and apple crumble - 5/10
Veggie chilli - 6/10
Chocolate sponge - 1/10
And that concludes this episode of Masterchef. Scintillating, wasn't it!
The menu is quite comprehensive here and I like that they draw daft things onto your order to make you smile (I'm in bed 10C):
Also, the eggs are free-range!
Here is my evaluation of hospital food (note I did start an evaluation but I am crap at writing about food. I don't recognise meals as stodgy or rich or light. I can't identify whether it needed a different ingredient. To me, meals are either good, edible or bad. So without further a do, here is my rating out of ten):
Macaroni cheese - 10/10
Custard - 0/10 (I later discovered adding sugar sachets to it makes it a lot better)
Syrup sponge - 5/10
Omelette and dauphinoise potatoes - 7/10
Bread and butter pudding - 3/10
Tomato and cheese pasta - 8/10
Rice pudding - 4/10
Mushroom and pea risotto - 6/10
Rhubarb and apple crumble - 5/10
Veggie chilli - 6/10
Chocolate sponge - 1/10
And that concludes this episode of Masterchef. Scintillating, wasn't it!
From hospital - Friday
Not much to say today, really, which is probably a good thing. My drain is working well now and I have been for a 4-lap walk every 90 minutes. My laps of the floor take me around 30 minutes and it is helping to bring down the swelling quite noticeably. This morning the circumference of my right thigh was around four inches bigger than my left and now it's only an inch.
I do want to go home though. My brilliant husband has been here every day during visiting hours but it's a lonely business being in hospital.
I was moved to a private room yesterday as the constant flow of people in the ward was getting to me. It is amazing to have privacy and peace once more. When I was alone, I read my chart, and found the nerve agony was written down as 'some pain around the drain exit site'. This is completely inaccurate and confirms my suspicions that nobody was listening to what I was telling them at the time.
The only thing of note is that the nerve problem is now flaring up randomly with no provocation.They're only flashes of pain across my thigh above the knee, and across the upper right side, and they're not as intense as the other day during vaccing. But they are making me afraid, and they are sharp enough to make me gasp. The nurse's advice is to keep up with the painkillers - I'm on ibuprofen.
I do want to go home though. My brilliant husband has been here every day during visiting hours but it's a lonely business being in hospital.
I was moved to a private room yesterday as the constant flow of people in the ward was getting to me. It is amazing to have privacy and peace once more. When I was alone, I read my chart, and found the nerve agony was written down as 'some pain around the drain exit site'. This is completely inaccurate and confirms my suspicions that nobody was listening to what I was telling them at the time.
The only thing of note is that the nerve problem is now flaring up randomly with no provocation.They're only flashes of pain across my thigh above the knee, and across the upper right side, and they're not as intense as the other day during vaccing. But they are making me afraid, and they are sharp enough to make me gasp. The nurse's advice is to keep up with the painkillers - I'm on ibuprofen.
From hospital - Thursday
The drain has cleared 80ml overnight, which is nowhere near enough. My leg is like a giant sausage-shaped water balloon this morning and it is completely numb, like how your arm feels when you sleep on it and have no feeling at all. When I prod it, it feels like I'm touching somebody else. But there is no real pain other than the nerve pain when vaccing, and that cannot be touched even by morphine, so I asked to be untethered from it this morning. I am now officially not a junkie!
My lovely physios came along just now and asked if I'd like to try some stairs. They'd brought a wheelchair along, bless them, and seemed quite surprised when I said I didn't need it. They were more surprised when I zipped along at quite a speed, and when I went up and downstairs at a near normal pace, they looked at each other, laughed and said clearly I didn't need them. I got a 10 out of 10. Yay! I feel like I finally did something right! I was hoping to get out of here today but now there's talk of it being Monday. In the grand scheme of things, it's not a big deal but I really did want to be home for Easter.
I have to say, I am getting really frustrated now with the lack of communication and knowledge of what's going on. I seem to give the same information to lots of different people - 4 doctors and 8 nurses at last count - and nothing gets done about it. I am swelling up more by the hour and as of 3pm, nothing has been done. I first flagged it up 23 hours ago. I am lucky enough that I can physically get up and go make people listen to me. What if I had dementure or wasn't of sound mind? It's easy to see how things slip through the net. Patients should not have to explain the same thing to 12 different people. It should be written down, acted on and information fed back to the patient.
Update 8pm - After two miserably failed attempts by the nurses to attach a stoma bag to my drain, Mr Brackley came and did it himself with the help of skin glue and a dermabandage. It now drains through a small bag into a 2 litre bag which I can carry around. Not as neat as a suction drain but definitely functional. As of bedtime, we're at a fresh 150ml. Thank god for him. Also, he explained that the pain was likely caused by the end of the drain tube in my leg sitting close to a nerve. When the vac creates pressure, it sucks on the nerve and causes the pain. It turns out my leg feels dead because he removed the main nerve during the operation (it was too entangled with my lymph node chain). Hopefully within 6-12 months my other nerves will start to compensate a little. I should regain some sensation and stop feeling so much like I have a dead leg.
My lovely physios came along just now and asked if I'd like to try some stairs. They'd brought a wheelchair along, bless them, and seemed quite surprised when I said I didn't need it. They were more surprised when I zipped along at quite a speed, and when I went up and downstairs at a near normal pace, they looked at each other, laughed and said clearly I didn't need them. I got a 10 out of 10. Yay! I feel like I finally did something right! I was hoping to get out of here today but now there's talk of it being Monday. In the grand scheme of things, it's not a big deal but I really did want to be home for Easter.
I have to say, I am getting really frustrated now with the lack of communication and knowledge of what's going on. I seem to give the same information to lots of different people - 4 doctors and 8 nurses at last count - and nothing gets done about it. I am swelling up more by the hour and as of 3pm, nothing has been done. I first flagged it up 23 hours ago. I am lucky enough that I can physically get up and go make people listen to me. What if I had dementure or wasn't of sound mind? It's easy to see how things slip through the net. Patients should not have to explain the same thing to 12 different people. It should be written down, acted on and information fed back to the patient.
Update 8pm - After two miserably failed attempts by the nurses to attach a stoma bag to my drain, Mr Brackley came and did it himself with the help of skin glue and a dermabandage. It now drains through a small bag into a 2 litre bag which I can carry around. Not as neat as a suction drain but definitely functional. As of bedtime, we're at a fresh 150ml. Thank god for him. Also, he explained that the pain was likely caused by the end of the drain tube in my leg sitting close to a nerve. When the vac creates pressure, it sucks on the nerve and causes the pain. It turns out my leg feels dead because he removed the main nerve during the operation (it was too entangled with my lymph node chain). Hopefully within 6-12 months my other nerves will start to compensate a little. I should regain some sensation and stop feeling so much like I have a dead leg.
From hospital - Wednesday
Crappy crappy day.
I woke up desperate for toilet but I lay there for a couple of hours not daring to move. Eventually the bladder pain overwhelmed me so I decided to brave it; happily I got to the loo and back uneventfully. During their rounds, some more doctors came to see me; they knew about last night's pain although they thought it was around the drain site, which reiterates to my mind that the nurses didn't understand after all. I explained as best I could to the doctor, who said it was likely nerve damage and it should settle down. He said my drain wasn't vacced and we would just let gravity do its job - the lymph would slowly drip out in of its own accord. I got the sense again that nobody fully understood the pain I was in. Maybe nobody was properly listening because I was saying it over and over again; it made me scream at the top of my voice, it was like nothing I'd ever felt, it was unimaginable. And yet they were asking whether it was sharp or more of a dull ache.
Despite a good 45-minute walk around the entire floor of hospital, the drain wasn't filling a jot. I could feel a pouch of swelling around my abdomen and hip, and by the time my husband arrived at 6pm, it felt like there were water balloons inside my thigh so I asked the nurse what would happen if she vacuumed the drain. She told me to push a few ml of morphine then she'd give it a go. The fear of the pain was almost like the pain itself, dreadful, like no fear I've ever felt before. Before this, if you asked me to name three things I'm afraid of, I'd have given you spiders, butterflies and heights. To combat them, I have made myself hold a tarantula, go into a free-flying butterfly house and do a zipwire from a 10-storey building. I am not a coward by a long way but this fear of the pain was making me feel that way and making me seem that way to onlookers who didn't understand.
After I'd pushed four lots of morphine, Alex went to get the nurse who she said she'd go slow and I could say stop at any time. She took the tube out of the old drain and said as soon as she put it in the new one, it would start to flow. One deep breath then I gave the okay. It flowed. For three seconds I thought it would be fine, and then it hit. An immense pain rushing through my leg. Against my will I started screaming, felt like my leg was on fire. I remember begging 'please make it stop'. I guess she must have because the pain ended within maybe ten seconds. My poor husband looked like he wanted to cry and I felt dreadful for putting him in the middle of this. It's not something I would have wanted to see, my beloved partner screaming in pain.
After 10 minutes, with the drain de-vacced and working purely on gravity again, we went for a walk. After that, back in bed, we put the drain on the ground and slowly it started dripping. It's clearly not going to drain properly but a few drips are better than nothing.
I woke up desperate for toilet but I lay there for a couple of hours not daring to move. Eventually the bladder pain overwhelmed me so I decided to brave it; happily I got to the loo and back uneventfully. During their rounds, some more doctors came to see me; they knew about last night's pain although they thought it was around the drain site, which reiterates to my mind that the nurses didn't understand after all. I explained as best I could to the doctor, who said it was likely nerve damage and it should settle down. He said my drain wasn't vacced and we would just let gravity do its job - the lymph would slowly drip out in of its own accord. I got the sense again that nobody fully understood the pain I was in. Maybe nobody was properly listening because I was saying it over and over again; it made me scream at the top of my voice, it was like nothing I'd ever felt, it was unimaginable. And yet they were asking whether it was sharp or more of a dull ache.
Despite a good 45-minute walk around the entire floor of hospital, the drain wasn't filling a jot. I could feel a pouch of swelling around my abdomen and hip, and by the time my husband arrived at 6pm, it felt like there were water balloons inside my thigh so I asked the nurse what would happen if she vacuumed the drain. She told me to push a few ml of morphine then she'd give it a go. The fear of the pain was almost like the pain itself, dreadful, like no fear I've ever felt before. Before this, if you asked me to name three things I'm afraid of, I'd have given you spiders, butterflies and heights. To combat them, I have made myself hold a tarantula, go into a free-flying butterfly house and do a zipwire from a 10-storey building. I am not a coward by a long way but this fear of the pain was making me feel that way and making me seem that way to onlookers who didn't understand.
After I'd pushed four lots of morphine, Alex went to get the nurse who she said she'd go slow and I could say stop at any time. She took the tube out of the old drain and said as soon as she put it in the new one, it would start to flow. One deep breath then I gave the okay. It flowed. For three seconds I thought it would be fine, and then it hit. An immense pain rushing through my leg. Against my will I started screaming, felt like my leg was on fire. I remember begging 'please make it stop'. I guess she must have because the pain ended within maybe ten seconds. My poor husband looked like he wanted to cry and I felt dreadful for putting him in the middle of this. It's not something I would have wanted to see, my beloved partner screaming in pain.
After 10 minutes, with the drain de-vacced and working purely on gravity again, we went for a walk. After that, back in bed, we put the drain on the ground and slowly it started dripping. It's clearly not going to drain properly but a few drips are better than nothing.
From hospital - Tuesday
Tuesday was a good day where I didn't need any morphine, and my drain was filling up nicely. I saw the physio, started my exercises to get my lymph moving properly, and even went for a 30-minute walk around the floor. I had a blood sample drawn and I ate a little food without being sick. My two best friends came to see me, which was lovely, and all was well.
And then.
Just before bed, I asked nurse if she would empty my drain because it was just shy of being full and I didn't want it to overflow in the night:
She got a new flask, detatched the tube from the old flask, pressed the vacuum button and attached it. The vacuum sent a swirl of blood, clot and fluid swishing out into the new drain and then it began. AGONY. My vocabulary is not impressive enough to fully describe the pain. The closest image you can get is of ripping open your thigh, pouring acid into your muscles then taking a blow torch to it. I was aware that I was screaming very loudly and I was unable to stop. I knew I was making this noise but it didn't sound like me. I was aware that people came running into my cube and after a few seconds that felt like an eternity, someone de-vacced the flask so the liquid stopped gushing and the pain ended. My main memories are of the taste of blood (I had bitten my hand so badly it was bleeding) and of the nurses not seeming to understand what I was telling them (later confirmed by the inaccurate notes written in my chart). I certainly didn't understand what was happening. All I knew is that I couldn't stop crying even though the pain was gone. The pain was right across the thigh above my knee. There is nothing obvious there to hurt - it's well away from any incision and drain areas. (ETA I later found out the drain was sucking on a nerve...the agony was nerve pain).
The nurse told me they had stopped the drain's vacuum and to load up on morphine to get me through the night. I went from 45ml to 97ml that night through fear the pain would come back. It didn't but I was too afraid to move even a millimetre just in case.
Post-groin dissection - From hospital - Monday
I am writing this from my hospital bed, able to type again now my hand's not hooked up to morphine. It's not all good news, as you will find out, but I will write and post each day at a time so it's in manageable sections. My experience of going into theatre is pretty much the same as last time so I won't rehash it. The surgeon marked these two extra moles to remove (there is a third under my wide local excision scar but they didn't remove it because they ran out of time):
Mr Brackley told me just before I went under that my CT scan had come back as clear (hooray!) and I went in at 11am then woke up in recovery at 2.35pm. I had been told the operation would take 2-3 hours so I was wondering why it ended up a lot longer. I later found out it was a combination of the extra removal of two moles, and because I needed to be intubated so I could breathe properly.
I was hooked up to morphine via a device called a PCA - patient controlled analgesia:
Basically it's what it sounds like - a machine with a big syringe of morphine inside. The syringe is attached to a tube which goes into my hand, and it puts me in control of my own pain relief although there is a 5-minute lockout between doses to prevent overdosing. All I do when I want a shot is press a button and it is delivered painlessly through this device in my hand:
The reason there's a capped-off bit is that I initially had a drip in there to hydrate me too. The morphine was making me very sick and the lowest point came that evening when I needed the toilet for the first time. After rejecting a bedpan and a commode, I decided I could walk across the room to get to the loo myself. With my husband holding me up and the support of my wheely stand, I managed to take three steps before the pain made me stop. I did get there eventually and discovered that one of morphine's side effects is difficulty to urinate. What usually takes 30 seconds literally took 20 minutes, and I had to keep shouting to the nurse and my husband that I was okay. When I had finished, I had to go the 15 metres back to my bed in a wheelchair, during which I needed a break to stop and throw up. The first day was always going to be the worst, and later that night I had an antiemetic (anti-sickness) jab which did wonders and I didn't throw up at all after that. I also discovered that I am to be given anti-coagulant injections into my stomach each night and antibiotics.
This is how much fluid had collected by the end of the day:
Mr Brackley told me just before I went under that my CT scan had come back as clear (hooray!) and I went in at 11am then woke up in recovery at 2.35pm. I had been told the operation would take 2-3 hours so I was wondering why it ended up a lot longer. I later found out it was a combination of the extra removal of two moles, and because I needed to be intubated so I could breathe properly.
I was hooked up to morphine via a device called a PCA - patient controlled analgesia:
Basically it's what it sounds like - a machine with a big syringe of morphine inside. The syringe is attached to a tube which goes into my hand, and it puts me in control of my own pain relief although there is a 5-minute lockout between doses to prevent overdosing. All I do when I want a shot is press a button and it is delivered painlessly through this device in my hand:
The reason there's a capped-off bit is that I initially had a drip in there to hydrate me too. The morphine was making me very sick and the lowest point came that evening when I needed the toilet for the first time. After rejecting a bedpan and a commode, I decided I could walk across the room to get to the loo myself. With my husband holding me up and the support of my wheely stand, I managed to take three steps before the pain made me stop. I did get there eventually and discovered that one of morphine's side effects is difficulty to urinate. What usually takes 30 seconds literally took 20 minutes, and I had to keep shouting to the nurse and my husband that I was okay. When I had finished, I had to go the 15 metres back to my bed in a wheelchair, during which I needed a break to stop and throw up. The first day was always going to be the worst, and later that night I had an antiemetic (anti-sickness) jab which did wonders and I didn't throw up at all after that. I also discovered that I am to be given anti-coagulant injections into my stomach each night and antibiotics.
This is how much fluid had collected by the end of the day:
Sunday, 1 April 2012
Bucket List
More for fun than because I plan on dying, I have decided to write a bucket list. Some people's are really weird and some websites have ideas for them which are even weirder. For example, go and sing nursery rhymes in a supermarket.
Why the hell would I do that?! Anyway, here is mine so far:
This time tomorrow I'll be being wheeled into surgery. I bloody well hope I wake up from it!
Why the hell would I do that?! Anyway, here is mine so far:
- Save a million battery hens
- See the Northern Lights (I have been on a Northern Lights sled tour but they didn't oblige)
- Learn to street dance
- Go on a segway
- Ride a motorbike
- Go on holiday to somewhere with white beaches, blue seas, palm trees and colourful fish
- Abseil
- Run a marathon
- Ride in a hot air balloon
- Go to the Day of the Dead festival in Mexico
- Visit as many countries as possible
- Go in a helicopter
This time tomorrow I'll be being wheeled into surgery. I bloody well hope I wake up from it!
Friday, 30 March 2012
Hold the front page!
Listen up, everyone with melanoma. You will be delighted to learn some breaking news. Skin cancer, it turns out, is "not real cancer". I have this on excellent authority from the new girl at work who is replacing me for six weeks. I met her today and I feel rather stupid. There was me thinking she was here as a temp to take over my project, when all along she is secretly the world's foremost cancer specialist, with knowledge that no other person has.
Within five minutes of meeting me, she was telling me she likes her boyfriend but hates that he's vegetarian (hi!). Within ten minutes, she told me that her mum, dad and grandma all have cancer. Her mum and gran have colon cancer, which is really serious and has made her gran quite unwell. Her, dad, on the other hand "only has skin cancer so it's not like it's real cancer or anything".
Phew. Aren't you relieved?
I can't wait to let the surgeon know when I go in on Monday for my lymphadenectomy. Those silly doctors. All this time, they have been treating people and doing operations when it turns out it's not real cancer. Doh!
Let me put it this way for anyone in doubt: if chemotherapy drugs worked on this type of cancer, I would be offered them. They would make me bald and sickly. Would that make you take it seriously?
Within five minutes of meeting me, she was telling me she likes her boyfriend but hates that he's vegetarian (hi!). Within ten minutes, she told me that her mum, dad and grandma all have cancer. Her mum and gran have colon cancer, which is really serious and has made her gran quite unwell. Her, dad, on the other hand "only has skin cancer so it's not like it's real cancer or anything".
Phew. Aren't you relieved?
I can't wait to let the surgeon know when I go in on Monday for my lymphadenectomy. Those silly doctors. All this time, they have been treating people and doing operations when it turns out it's not real cancer. Doh!
Let me put it this way for anyone in doubt: if chemotherapy drugs worked on this type of cancer, I would be offered them. They would make me bald and sickly. Would that make you take it seriously?
Wednesday, 28 March 2012
CT Scan
I had my pre-op yesterday morning at Whiston then it was over to St Helens for the CT scan to check for any other metastasised tumours. Unlike TV medical shows, where they get the results there and then, it seems I will have to wait until at least next week and possibly two weeks for mine. The nurse and radiologist didn't give me any horrified looks as they released me so I don't imagine I am riddled with tumours or anything. Back to waiting.
Me being me, I like to know in advance what every procedure is for and what to expect. Part of the reason I started this blog is that most first-hand accounts of melanoma seem to be from America where the healthcare system and subsequently the treatments offered are different to those in the UK which are received on the NHS. When I queried why, I was told that the hospitals get by on billing huge amounts (e.g. thousands of dollars per scan) to the private health insurance companies so American patients are often given treatments as standard which in the UK would be considered either unnecessary or only offered as part of a clinical trial. An example of this is an immunotherapy drug called interferon which anyone researching melanoma will find pops up a lot. In the UK, it isn't offered as standard because the results are not conclusive enough to justify the cost.
Anyway, I digress. I looked into what would happen during the CT scan and came across some horror stories. I am not easily frightened so I paid them no attention, but some people might be worried so hopefully I can put their minds at ease by saying it was nothing at all to worry about there's nothing to it:
Prior to arriving, I had to fast for 4 hours and only drink clear liquids. Then 90 minutes before the scan I had to drink 2 pints of water as fast as possible to ensure the clearest view of my innards. On arrival, I was asked to drink another two glasses of water then change into the beautiful patterned robes that all hospitals seem to rock. I still haven't got the hang of tying them - I never seem to do it right and end up with either my backside hanging out or it all twisted up. After I got changed, I was taken into the scan room which is basically a room with the big CT machine in the middle similar to this (I couldn't take a photo because my phone was with my clothes):
The nurse put a cannula in my wrist:
It would normally go into the arm but my one good vein had been used that morning for a blood test. I won't lie and say it was painless - it hurt a fair bit more than usual although apparently either my "skin is like leather or the needle is blunt!". Either way, the pain doesn't last too long so if you hate needles, just don't look. I used to loathe them and got very jittery and nervous when I gave blood, but it's like anything - do it often enough and the fear dissipates.
Once the cannula was in, I was put through the machine a few times to set the scanner up to take images. As you go through it, an American voice tells you periodically to hold your breath. I was worried at first as I win the record for being the crappest person on earth at this. I have the lung capacity of an earthworm (yes, I know they don't have lungs!) and I think the record for holding my breath currently stands at 22 seconds - this was after I went into a public toilet where somebody had expelled their previous day's food in a very obvious and obnoxious manner.
Anyway, you only have to hold your breath for 10 seconds at a time and the scanner has a countdown plus an image either of someone smiling or puffing out their cheeks with a frown - presumably they'd been in the same disgusting toilet I had been in. Once you've been through a couple of times, a contrast liquid is injected through the cannula. The nurse will warn you in advance that it sends a hot flush through your body. It wasn't a pleasant sensation and some people apparently feel like they've wet themselves - the heat mimics warm urine. The worst part for me was the metallic taste I got in my mouth, which lasted for about an hour after. It's not unbearable by any means, just a bit like you've licked some old money. After that, you're immediately zipped forwards and backwards through the scanner again and then you're done. I had read it can take half an hour, and given that I was having a thorax, abdomen and pelvis scan I thought I'd be in there ages. But I was in and out within 10 minutes. Then, the cannula is taken out and you're done.
I wonder how much I've cost the NHS now?
Also, I am downloading TV series' in preparation for my boring recuperation.
Me being me, I like to know in advance what every procedure is for and what to expect. Part of the reason I started this blog is that most first-hand accounts of melanoma seem to be from America where the healthcare system and subsequently the treatments offered are different to those in the UK which are received on the NHS. When I queried why, I was told that the hospitals get by on billing huge amounts (e.g. thousands of dollars per scan) to the private health insurance companies so American patients are often given treatments as standard which in the UK would be considered either unnecessary or only offered as part of a clinical trial. An example of this is an immunotherapy drug called interferon which anyone researching melanoma will find pops up a lot. In the UK, it isn't offered as standard because the results are not conclusive enough to justify the cost.
Anyway, I digress. I looked into what would happen during the CT scan and came across some horror stories. I am not easily frightened so I paid them no attention, but some people might be worried so hopefully I can put their minds at ease by saying it was nothing at all to worry about there's nothing to it:
Prior to arriving, I had to fast for 4 hours and only drink clear liquids. Then 90 minutes before the scan I had to drink 2 pints of water as fast as possible to ensure the clearest view of my innards. On arrival, I was asked to drink another two glasses of water then change into the beautiful patterned robes that all hospitals seem to rock. I still haven't got the hang of tying them - I never seem to do it right and end up with either my backside hanging out or it all twisted up. After I got changed, I was taken into the scan room which is basically a room with the big CT machine in the middle similar to this (I couldn't take a photo because my phone was with my clothes):
The nurse put a cannula in my wrist:
It would normally go into the arm but my one good vein had been used that morning for a blood test. I won't lie and say it was painless - it hurt a fair bit more than usual although apparently either my "skin is like leather or the needle is blunt!". Either way, the pain doesn't last too long so if you hate needles, just don't look. I used to loathe them and got very jittery and nervous when I gave blood, but it's like anything - do it often enough and the fear dissipates.
Once the cannula was in, I was put through the machine a few times to set the scanner up to take images. As you go through it, an American voice tells you periodically to hold your breath. I was worried at first as I win the record for being the crappest person on earth at this. I have the lung capacity of an earthworm (yes, I know they don't have lungs!) and I think the record for holding my breath currently stands at 22 seconds - this was after I went into a public toilet where somebody had expelled their previous day's food in a very obvious and obnoxious manner.
Anyway, you only have to hold your breath for 10 seconds at a time and the scanner has a countdown plus an image either of someone smiling or puffing out their cheeks with a frown - presumably they'd been in the same disgusting toilet I had been in. Once you've been through a couple of times, a contrast liquid is injected through the cannula. The nurse will warn you in advance that it sends a hot flush through your body. It wasn't a pleasant sensation and some people apparently feel like they've wet themselves - the heat mimics warm urine. The worst part for me was the metallic taste I got in my mouth, which lasted for about an hour after. It's not unbearable by any means, just a bit like you've licked some old money. After that, you're immediately zipped forwards and backwards through the scanner again and then you're done. I had read it can take half an hour, and given that I was having a thorax, abdomen and pelvis scan I thought I'd be in there ages. But I was in and out within 10 minutes. Then, the cannula is taken out and you're done.
I wonder how much I've cost the NHS now?
Also, I am downloading TV series' in preparation for my boring recuperation.
Sunday, 25 March 2012
Nightmare on C Street
I am starting to fear bedtime because of what my head will throw at me. I've always had nightmares in times of stress and this is no different. Whilst I am coping fine consciously, my subconscious is clearly being left to deal with all the anxiety, worry and fear of future results and it seems to deal best in the form of nightmares. Not the sweating, tossing and turning type, just the sort that leave you feeling hugely grateful when you wake up and realise it was a dream.
I have just woken from a pleasant little episode where Armageddon struck. Huge floods were wiping out my loved ones and the rest of the world. Normal people turned into murderers and looters. I had to make it across town to save the animals that people had abandoned whilst people shot at me and tsunamis almost killed me. I started growing vines in my mouth out of my gums, thin green swaying vines filled with blood that I had to chew off before they choked me. Each time I chewed one my mouth filled with blood and my teeth came loose and broke apart.
When I woke up I could taste blood where I was biting my skin off as I slept, and my teeth ache as though I have been grinding them hard in my sleep.
I wish it was just a one-off but I've been having them for about two months, perhaps 5 times a week. Not always as bad as this one, which has prompted me to note it down, but severe enough that I feel permanently tired and unrested. Ah well.
Today we are off to see a local woodland burial ground that I found last week when I planned my funeral. Not because I think I'm about to die, although this has been a wake up call. It's just one of those things that I feel a lot better for doing, and it wasn't anywhere near as morbid as it sounds; in fact it was quite freeing to plan it the way I would like it. The burial ground is where I think I'd like to be laid in but I may as well go and check it out to be sure. It reminds me of an old lady I once saw in the Pere Lechaise cemetery in Paris. She was tending to (what I presume was) her husband's grave but the headstone had room for her on it. At the time, being in my early 20's and feeling invincible, I thought it was weird to know and even think about your funeral but as I've got older and more practical I have seen the benefits in being foreplanned.
The final thing to note is that I told my other best friend yesterday. He didn't take the news well, which reminded me why I haven't told people. I can't deal with their emotions as well as my own. He will hopefully come and see me in hospital and whilst I'm recuperating at home though so at least I won't be as bored.
I have just woken from a pleasant little episode where Armageddon struck. Huge floods were wiping out my loved ones and the rest of the world. Normal people turned into murderers and looters. I had to make it across town to save the animals that people had abandoned whilst people shot at me and tsunamis almost killed me. I started growing vines in my mouth out of my gums, thin green swaying vines filled with blood that I had to chew off before they choked me. Each time I chewed one my mouth filled with blood and my teeth came loose and broke apart.
When I woke up I could taste blood where I was biting my skin off as I slept, and my teeth ache as though I have been grinding them hard in my sleep.
I wish it was just a one-off but I've been having them for about two months, perhaps 5 times a week. Not always as bad as this one, which has prompted me to note it down, but severe enough that I feel permanently tired and unrested. Ah well.
Today we are off to see a local woodland burial ground that I found last week when I planned my funeral. Not because I think I'm about to die, although this has been a wake up call. It's just one of those things that I feel a lot better for doing, and it wasn't anywhere near as morbid as it sounds; in fact it was quite freeing to plan it the way I would like it. The burial ground is where I think I'd like to be laid in but I may as well go and check it out to be sure. It reminds me of an old lady I once saw in the Pere Lechaise cemetery in Paris. She was tending to (what I presume was) her husband's grave but the headstone had room for her on it. At the time, being in my early 20's and feeling invincible, I thought it was weird to know and even think about your funeral but as I've got older and more practical I have seen the benefits in being foreplanned.
The final thing to note is that I told my other best friend yesterday. He didn't take the news well, which reminded me why I haven't told people. I can't deal with their emotions as well as my own. He will hopefully come and see me in hospital and whilst I'm recuperating at home though so at least I won't be as bored.
Subscribe to:
Posts (Atom)