I caught the end of an announcement (or something very like) on the radio (LBC) yesterday. To say it's been bothering me since is something of an understatement.
Apparently, were someone with terminal cancer or motor neurone disease to become unwell and to be suspected of having contracted the virus, it's unlikely that they would be taken to hospital should the need arise: they would be expected to remain at home.
And, in the event that they were taken to hospital, they would NOT be offered a ventilator.
Someone like me (terminal cancer, immunosuppression PLUS asthma treated with steroid inhalers) wouldn't stand a chance.
Now, I'm fairly pragmatic and I'm not one for panicking unnecessarily, but this has hit me quite hard. I may be terminal, but I'm not done QUITE yet! I frequently quip that I plan to stick around for another couple of decades at least. Possibly wishful thinking, but it's one of my coping mechanisms.
The cancer is currently kept in check by the immunotherapy I'm undergoing (and which will continue, lockdown or no lockdown, although all my scans - MRI, CT and echocardiogram - and non-urgent appointments have been cancelled).
It's hard enough isolating not only from everyone on the other side of my front door but also from everyone within my own household (except the doglets) for the next three months without having to deal with the prospect of not being helped to breathe were that situation to arise.
Did anyone else hear this yesterday? Or a similar announcement or notification elsewhere? PUHLEEZE tell me I've misheard this...
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I know some doctors got in big trouble for writing letters to elderly and very ill vulnerable people asking them to sign a DNR so they can free up a ventilator if need be for younger fit people,
They had to apologise, that being said I've heard things like this going on, nurses asking family if they could sign a DNR for family member in hospital, but I don't know if its true,
I don't think it's came to that yet though unless your like 90 years old, if you've a life to live then they can't do it, I think it was mainly aimed at really old frail ill people who wouldn't stand a chance even if put on a ventilator
Some areas are worse than others, I'm terrified I don't want to go out and I'm 40 and other than I'm not sure my lungs could cope if I caught it as I'm so unfit and almost feel like my lungs would explode when I run for a bus but I'm fine,
But so was 28 other healthy people who caught it and died, I can't handle it, I can't cope, I have generalised anxiety disorder anyway which means I over think everything,
So if I'm freaking out, I can't imagine what you are going through and hearing this is enough to freak anyone out,
Nurses and doctors sign something like an oathe to help anyone by any means so I can't see them not give you assisted help with you're breathing as it's unethical
desquinnPartnerVolunteerFMAUK Trustee• in reply to
it was a GP surgery that sent it out in error and not any national guidance. DNRs are personal decisions and we have seen examples of preists giving up their chance at a ventilator for a younger patient.
difficult decisions are made every day and we do not see or hear of them. This will make them a bit more public about things like that but it does not mean it is not the norm and triaging people is all about this. Read about any military hospitals/ medics and you will see what they have to do.
How this decision to have medics make those difficult decisions will pan out, I do not know, but it is now being widely reported in the media (radio is a constant here and I normally hear of things a shade before they are reported on, say, the BBC online). These are sensitive, potentially explosive, issues and, if not handled correctly or if entrusted to the wrong persons, could end up leading us down the dubious path of eugenics or worse.
Staying aware of potential outcomes is only wise. Please try to remain calm, informed and rational; only this will permit us to stay on an even keel in the weeks and months ahead.
Stay safe.
I've just seen your pro puc if that's you, you look young so I highly doubt they won't help you because of your age even if you're a very poorly lady
They'll be riots, littrally people will sue, the NHS and government won't hear the end of it
I'm sure you misheard and if you didn't you need to get this out to the public as it doesn't sound right one bit
desquinnPartnerVolunteerFMAUK Trustee• in reply to
not only do I think this will not be the case but I think the comments themselves are not helpful!
I posted this yesterday in a similar thread. Got to realise that the newspapers have a job to do as well as reporting the news and not all newspapers are equal. Some over dramatize things, But here is my earlier comment:
"I think that is a more stark representation than reality. Doctors are always making these decisions and areas like transplant are the ones that we are aware of. A lack of ventilators, staff or other resources are why we are staying at home to take the pressure off the NHS
But a ward or hospital is a microcosm that may have enough capacity one day or stretched the next depending on what stress they are under. Doctors will consider who needs what on clinical need. Patients that are shielding will be more difficult cases but doctors are looking to save everyone they can.
Not being honest with your doctor is the quickest way to help them make a mistake about your care and you to be worse off as a result. Do not hide anything from them and trust in their professionalism."
turning on replies (until I get a chance to chat to other team members)
The guidelines are a draft and are not in place. Choosing directly on age or disability is not part of it as it is against the law but clinical need and capacity are always factors in clinical decisions.
At present moment there is enough capacity. And that is what we are trying to maintain by staying home.
Across the pond they just announced that anyone over 60 with underlying conditions won’t be given anything except comfort care. That means that both myself and hubby are already considered collateral damage.
Unfortunate but good health and youth win the lottery here.
With our medical specialists dying as well as little to no necessary gear/equipment hospitals to capacity and this plague weeks away from peeking I understand they must make these hard decisions.
Doesn’t mean I like it but it’s another life altering experience that’s completely out of my/our control.
🌎♥️🌎♥️🌎♥️🌎♥️🌎♥️
Just in case it comes to fruition:
It’s been an honor and a privilege to be a member/participant in the HU forums.
I’ve loved meeting and bonding with each and everyone of you.
I hope I helped at least a little for this was my goal.
Please take care and do your best and remember that I truly loved all of you and kept you in my thoughts and prayers and mostly my heart.
What I usually say to my hubby I’ll tell you now; should anything happen I’ll meet you on the other side of Life’s door.
I try to follow the trajectory of policies addressing this outbreak in the U.S., too, and it's heartbreaking to read that those over 60 with underlying conditions are going to more or less be left to their own devices, other than potentially receiving palliative care.
Don't say your goodbyes just yet, though...
Remember our pact, EvaJo?
It means that we will have those heartwarming conversations on the other side of *that* door, but in the interim we will carry on having them here, too!
Please be safe. Many facilities , equipment , supplies and manpower will be stressed as numbers of people get this virus. If there are not enough to meet the needs of all I do think tough decisions will be made by the teams. I know it will lead to heartache and sadness for most people who work in healthcare, They are willing to put there lives at risk to save others. My oldest daughter is an Emergency Trauma level nurse. She has to wear the same mask all day leaving deep lines and bruises on her face, She is in the middle of a divorce and her three kids stay with us. She tells me to tell you that she would do everything in her power to keep you safe and help you heal if you come to the department. They are trying to be creative on use of ventilators when needed .. even putting an extra tube to put two people on one. I think your beautiful voice and being will shine if and when you need help . Please please stay safe .. I pray all the doctors and nurses too will be safe as we battle this disaster. Many are losing their lives. I will be thinking of you . Virtual hugs and sincere love. Respectfully , Patricia
Such a heartwarming message; it restores my faith in humanity... If only everyone had the sensitivity and concern that you and your daughter are blessed with!
Your daughter is a key worker, one of those absolute angels putting their lives on the line every time they take a deep breath and walk in to their workplace to start their daily shift. We owe your daughter. Big time.
All I want now is for this period in humanity to right itself, for us to look back in wonder and disbelief. I want it to be a bad dream.
But it is our now.
And all we can do to preserve that now is to take every precaution possible, to survive, to try to have a future; we are slowly coming to understand that we can only do this in unison with other countries, peoples and communities.
I'm so grateful for your warmth and your concern, and I reciprocate both in full measure.
Stay safe. And give that girl of yours a hug from me. She is precious.🙏
Did you see the news article about the production of the CPAP. Continuous positive airway pressure. This will help to reduce the numbers needing ventilators and it will help save lives. It is better known as non invasive ventilation. I think this gives hope about the number of people who could be saved. In comparison to ventilators, they are relatively economical and basic to produce. So this means there will be more equipment to help with breathing difficulties of patients with Covid-19. As long as you are isolated and protect yourself and stay at home, your chances are greatly reduced of contracting it. Please take care of yourself at this time paying attention to everything you come into contact with. xxx
I did read about this, but my understanding was and is that it is a technology very much in its infancy - also in terms of its acceptance, spread and potential usage. I will do some more research.
I am isolating at home, but have to attend compulsory treatment at the hospital (not my usual hospital, a Spire facility that Onco OPD has taken over for the time being). That is vulnerability number 1.
Then there are the care calls that my mother (who lives with us) receives four times a day. That's potentially four separate vulnerabilities every single day. Obviously, we wipe down all the surfaces that we can think of that might be used during the carers' visits, and we have notices up reminding the ladies to use the hand gel that we've provided at six different places in our home, and to start their care call by using the sanitising gel as soon as they come in, then wash their hands, then use the sanitiser again and only then go into Mum's room or proceed with their call. They might find that a little OTT, but we have a good equation and they're always very obliging. They do not have masks, nor are they required to wear any (which does seem odd to me). I am always squirreled away in my room when they call.
So, you see, my isolation comes with strings. I do feel slightly helpless, but try to maximise my sense of control by remaining as informed as I can.
I am isolating from my partner, too, as he is currently working on-site one week, then from home the next. From Monday, he has a bespoke arrangement with his employer that will allow him to WFH for the foreseeable. So after two-and-a-bit weeks, he can move back into our room (he's in our son's vacated room atm!) and we'll then be isolating together. I don't think we could stand the thought of having very little to do with one another for the next few months!
Thank you for reminding me about the new tech: you are always very sensible and resourceful: I'm going to go dig further now!
CPAP is well established kit bit there are new versions / brands of these as well as variants. Also there are new ventilators coming on Stream slowly but also modifications to make them supply multiple patients.
But when not counting this extra supply the current capacity had not been reached.
If its between you and a fit person 28 with 2 young kids, 40 a social worker doing great work... etc etc I wouldn't choose you. You have terminal cancer. I know its hard and you're not done yet, I wouldn't be happy if I were you. Admin:-removed political comments-
If there are not enough ventilators who would you choose?
desquinnPartnerVolunteerFMAUK Trustee• in reply tojules6
This is why these guidelines exist and things like the Emergency Severity Index in the US and similar tools. Doc at hour 16 of a 12 hour shift has to decide what to do next. Flipping a coin or guessing is in no ones interest!
Social relevance or merit is NOT part of the criteria but who knows if that would come in at some point if needed. Saving a medic over a binman, a specialist nurse over a child care worker. Ethics boards toil over decisions like this all the time with analogs like the trolley problem and such like.
But as I have said a couple of times so far, these are draft guidelines for when we are at or beyond capacity which we are not as yet.
worry about income, jobs, getting food from the supermarket or how to keep occupied. Worrying about things that are not relevant, may not happen and are outwith your control is stress your body can well do with out.
That is precisely the ethical dilemma that confronts many. Ask my children and their obvious bias would hold sway: they're unwilling to let me go for another 35-40 years; according to my oncologist, if I continue to respond to therapy, I have no reason to believe I do not have decades in me yet.
Objectively, though, assuming that age isn't the sole criterion, who's to say which one of us would do and be more for our community, for humanity; who would leave behind a lasting legacy?
It's a sobering, judgmental dialogue and one that doesn't have definitive responses.
We can only hope and trust and allow ourselves to believe that resources will not run out, that deaths will be limited, that suffering will be dealt a blow in the near future - and we can all get back to some semblance of normality.
Meanwhile, the disease is still spreading. Hope, trust and belief must be accompanied by a healthy dose of realism and pragmatism.
If there are not enough ventilators, who would I choose?
The answer's not as straightforward as you would like.
As I think I mentioned this is not a new problem. Have a look at the trolley problem that philosophers, psychologists and others have used to work these sort of dilemas out. Bring in a bit of game theory / personal bias and it becomes very complicated very quickly.
My youngest brother and I had a chat the other day,we both did a lot of caring for my mum and dad and they were terminally ill,he expressed how scared he would have been if my mum was alive but with the conditionss she had,she went through all the stages of copd and I remember the last time she had been sent to hospital and the doctor was frank,he said he had seen my mum over her final years and her visits were so frequent and we were near the time where there would be little they could do next time. My mums frail body was coming to the point where it had had enough,my mums mind was as sharp as it ever was,she was funny,clever and even though she knew the score she kept at it.My mum had signed a DNR two plus years previously. She said no way under any circumstances do I want to be put on some machine and when I go let me go how I want.Its a very personal thing when someone knows its an option and I always respected my mums decision.Knowing that there were circumstances that they wouldn't treat her say that would be completely different, anger would not cover it!
I hope it doesn't come to this sending a virtual hug and foot rub xx
Respect to your mother, who knew her own mind and sounds like an astonishingly lovely lady!
I wonder what I would do if I felt my body had had enough: I suspect I would be ready to call it a day and I would make that clear to my children, too. As it is, they have the authority to make difficult decisions on my behalf at the right time, as I have given them Lasting Power of Attorney.
I consider myself fortunate.
There is something wonderfully liberating about that relinquishment of power to two very special human beings whom I trust implicitly, respect wholly and love without question or end.
You are lovely to express your concern - and that foot rub is gratefully received!
(One of my favourite things in the world is firm yet gentle massage: I've told Paul to make sure he gives me a shoulder massage while I'm passing away and I'll go happy, serene and soothed!)
A friend of mine is a nurse, working extremely hard through this crisis, in a poorly funded hospital, she tells me that every day decisions have to be made on who lives and who dies. Thankfully she does not have to make the ultimate decision.
This connects with my thoughts, I would hate to be in the doctors place. I know the emotional toil it would be and the proverbial can would be kicked further down the road for counselling.
Ultimately these medics are looking at say a ward of 20 people and thinking how can I get the most amount of these discharged home to stop the suffering of 20 families.
I have long contended that medical professionals are veritable gods here on Earth.
The decisions that need to be made are heartbreaking, but very real.
Trauma comes in many guises, and I suspect that having to make those hideous decisions must result in mental health being severely impacted - sometimes immediately, sometimes years down the line.
Yes I have heard similar on the news but not relating to specific conditions. I have also seen that fitness/frailty might be a factor used if rationing is necessary.
An acquaintance had it and wasn't admitted to hospital when he could not breathe as there were no beds available in intensive care. He was told what to do at home over the phone. Fortunately he is now improving but is still very ill. He is in his 40s and fit.
Keep yourself isolated is the best advice, this will massively reduce your chances of catching it and should reduce your worry. Keep safe.
Ajay575, in some ways, it's incredible how this single microbe is quite literally felling humanity.
We're all hoping that this horrific situation begins to show signs of abating. We are desperate for those "green shoots" that the government would have us believe are on the horizon.
A positive mindset is great, but we do need to remain realistic and vigilant. The three weeks you describe are likely to be a prologue to the main act.
The truth is that any green shoots must be rooted in people's buy-in, volition, compliance. and ability to stay the course.
I'm appalled that some among us believe that protecting the population is tantamount to an imposition! It is not. Survival sometimes demands discipline. The time has come for discipline. And for people to exercise their judgment and become part of the solution.
As I've said elsewhere, isolation comes with strings for me, as I still have to receive treatment every three weeks at the hospital; I'm required to undergo regular blood testing at home, i.e. not observe a distance of two metres from the medical caregiver; plus - our home is visited four times a day by various carers who help to look after my elderly mother.
I do what I can (sanitising, masking, covering up, maintaining a distance), but these are all vulnerabilities that I can't avoid or prevent.
Stay safe.
Please don't worry over this. You have enough to worry about without this fake news. Currently the NHS is coping with everyone and new hospitals are coming on line to cope with more people.
Possibly people with cancer and other illness's are better treated at home as long as their Covid19 does not progress to an emergency situation - it may be safer for them at home if they have low immune systems. However if it became dangerous I'm sure they / you would be offered the same treatment as everyone else. Take care and please ignore the news just now. Stay in and keep safe. We will get through this. X
Yes - that is the caveat: as long as the Covid-19 that people with cancer contract does not progress to an emergency situation. Unfortunately, the immunosuppression that goes hand-in-hand with specific stages and therapies of the disease leaves many of us predisposed to just such a vulnerability. In the end, it does come down to a numbers' game in terms of resource availability and allocation.
I'm doing all I can to stay in! The only time I exit my house in the current climate is to receive immunotherapy (every three weeks): I'm due to go in again this Thursday and I'm not looking forward to it one bit. But I'll be armed with a mask, disposable gloves and (assuming the eye protection I've ordered arrives in time) protective goggles, too.
We do have carers visiting our home four times a day (to assist my mum), and that's an additional vulnerability. We insist on extra layers of sanitising and hand washing, but at the end of the day, there's only so much you can do!
I heard about the care home in Glasgow where there was a whole spate of deaths
I can't avoid going in for immunotherapy as it's sort of keeping me stable and I would doubtless decline without it. That's my dilemma: I'd really rather not risk it, but I have no choice...
Hi just read your post and just wanted to send you a hug it's the 1 thing in life we all need but can't do I don't want to talk about what you did just wanted to wish you the best of luck stay strong and don't give up sounds like you all ready been thru a lot and no doubt you have to go thru more you can do it and you will and wen you do I want a message back in that few years to say you beat it all and your still here so look forward to the message in time take care my friend all the best x
Hello, Mark8... What a caring response! I'm very grateful.
I'm afraid there's no beating the cancer in my case: that has been made clear to me.
But that's OK!
What we are trying to do is to maximise and enhance the time I have left (and, ideally, I'd like that to be a couple of decades, thank you) by leveraging a combination of chemotherapy (whenever possible without triggering neuropathy), immunotherapy (ongoing), radiotherapy (to specific areas at the appropriate time/s), orally administered drugs (too many to list, but I assume they're doing their job), supplementary therapies (pain management sessions, art therapy, physiotherapy... I've also expressed an interest in music therapy, but they had no slots at the time, so I'm biding my time for now and, anyway, current circumstances wouldn't have allowed attendance).
And then there's the (not insubstantial) support I'm receiving from the hospital and hospice - and from close friends and family. Online support- including this forum - is a powerful resource, too. We run the risk of underestimating how much virtual support is out there and how much solace we can derive from the relationships and bonds we forge.
I have learnt to be kind to myself and to forgive myself. Just that change in mindset has helped so much. I really am very fortunate - despite my circumstances. So many people are left to get on with it all alone.
So - yes - as I was saying (typing!), the cancer I have is incurable, BUT that doesn't mean that I'm not extracting every ounce of living from life while I'm here!
Now, if only we could get this stupid virus out of the way, we could all go back to living properly again - this time through the lens of kindness, solidarity and a real sense of community and kinship.
I read your post with interest. This has been on my mind for the last 2 months.
I have a rare lung disease,lupus and RA.the consultant I saw on my first visit told me I wouldn’t get better,but they hoped to control my symptoms.some days I’m better than others.
I have really thought about the ventilator issues.
If there was 1 ventilator and there was me and someone like my daughter in law- frontline NHS worker,3 young children. I would feel guilty if I was given that ventilator!
Changing the subject slightly,I read that it is unclear whether or not ventilation ,with high levels of oxygen would b beneficial to individuals with Interstitial lung disease.
So,after,much thought. Have decided that if I do get Covid 19, I would like to return home with the appropriate drugs and oxygen , if possible.
I don’t think. I want to die alone in hospital with no visitors. Sorry for he negative tone of this reply
Clearly, there is so much to think about, so much at stake.
Earlier today, I heard that a points-based system could be being introduced to determine who qualifies for intensive care and who doesn't. I understand completely that there has to be a policy in place so that these decisions are not made arbitrarily, but the realisation that individual considerations are unlikely to be taken into account is frightening, nonetheless.
I don't construe your message as being negative. I'm a pragmatist and, like you, I'm not keen on dying in hospital, alone and betubed (new word?)
Lots to consider and (currently) plenty of time to reflect.
My hospice consultant called me an hour ago. I offloaded a bit. Not sure that's entirely what she's there for, but she heard me out! The upshot is that I'm going to be writing to my oncologist to explore whether we can increase the intervals between immunotherapy sessions without that intervention compromising my health further. I'm slightly panicked whenever I have to attend a session; the chances of picking up a less than desirable pathogen in the hospital setting isn't inconsiderable.
We shall see.
I hope your walk cleared your mind and was invigorating.
Thanks.my mind is far from clear,but the walk did me good. I’m having a lupus flare and my back is really sore. I need to keep moving.
I’m glad uourconsultant rang . It will have done you good to offload, I hope your oncologist agrees with your plan,having some control helps.
I had to go A N E 3weeks ago. Worsening breathlessness, I was sent by 111.
I was so frightened.
The best bit was they put me in a room on my own with the door shut. Theconsultant sais Id got a bacterial lung infection, he didn’t say whether it was my existing interstitial pneumonia!
sent me home with antibiotics.
The GP rang me, he said the infection markers weren’t high enough for antibiotics,so back on immunosuppressants,
Sorry to ramble,back to my original thoughts.
When I was first diagnosed, my head was every where.
Me of my friends/workmates, who is a psychologist suggested that I get some cognitive behaviour therapy. My GP agreed,I was assessed online,I qualified for CBT.
I did it online.
It was 6-7 weeks and was helpful in sorting my head out. I can still access the transcripts online.
I’m still getting my head round stuff,my family find it hard to discuss,especially my daughter and daughter in law.
Same as really. Have had a bad back,GPS nurse practitioner suggested upping Gabapentin. Made no difference,sprang again after a week.
GP rang me. We discussed not knowing whether it’s a lupus flare or a bad back.hea veryapproachable,which makes me realise that I am ill.prior to my diagnoses,he was really abrupt,now he seems to have more time for me.
The muscles at the side of my spine kept going into spasm,which made it even worse?
I asked if U could try amitryptline, he agreed.
I apologised for being a pain, he said it’s not your fault we can’t fix you- made me feel a little encouraged.
Update,amytrptylline seems to be starting to work,not as stiff,so immobility is reducing,which is helping greatly.
Still have underlying conditions,but hey ho.
Thanks for asking.
How are you,how did the conversation with the oncologist go?
Don't get me started on Gabapentin! A more evil drug I've yet to come across. It messed with my mind, made zero difference to my pain levels and, when I came off it (admittedly, I didn't taper it off), I suffered the most extreme depressive experience imaginable. It only lasted for a couple of months (until I had gotten it all out of my system and out of my 'body-memory', if that makes sense), but as someone who has never before or since experienced depression, I was quite horrified. It also made my legs swell up so that I couldn't fit into my clothes or shoes any more. The swelling hasn't gone down completely even though I have been off Gabapentin for a very long time, and I have been told it is likely to be permanent.
It's hard, isn't it, when your condition is so nebulous and hard to pin down? I can see that you're having to try a whole host of things without an assurance of anything actually working. The fact that the Amitryptiline is working, though, is a great step forward. You need to start to see results.
My oncologist is proving very stubborn! Seems to think I must, at all costs, maintain the same intervals between immunotherapy sessions as before. My hospice consultant thinks otherwise but is ultimately not responsible for my treatment, so there's not a lot more that can be said or done to change my current regimen.
I’ve yried Gabapentin before,it worked better last time.
I’ve been on a low dose since beforeChristmas.
It seemed to be helping,but now I can’t go to the gym,or the physio,it’s got worse.,y ankles were a bit swollen.husband said “they told you at pulmonary rehab to tell someone”, my reply was who can. I tell?
I think the word nebulous is a good way to describe my conditions.its like suck it and see.
I don’t think even the consultants know much about it all.
I asked if the lupus and RAhad caused the lung damage,they said they didn’t know!
I googled,(they hate it,but there’s no information available) it said that it’s rare,but it does happen
Given that my presentation has been described as complex,,complicated, interesting etc,I think that given my conditions are interlinked. There’s a strong possibility that one thing has caused the other.so as my husband says “we crash on” my priority really,if to look after my mental health, I don’t need to drop in to depression.
I’m so sad to hear your oncologist is proving so intractable,it’s teally hard when they have all the power.
Just take every possible precaution when you go for immunotherapy.
Are you still being shielded at home? I don’t know how long this will last
We were told we would get a food parcel 8 days later nothing has turned up 8 days later. She said my husband shouldn’t go out either,he went shopping today.
We couldn’t last forever on what we had in the house.im just relieved we are not on our 80s and frail.
Sorry to whinge,just relieved to be sort of in 1 piece. Yes thank you,the Amitryptlline has made a littl difference so far.im reducing the Gabapentin veeeeery cautiously,given what I’ve read and what you have said.
Don't worry about whingeing! I do my fair share of that, too. I think we've every right to, given what we're experiencing.
Yes, I'm in the shielding group, so taking all precautions etc. I've received a couple of food parcels, but cancelled them today, as I'm now able to shop (primarily with Sainsbury's) online. I'm surprised that you've not received any - assuming that you're in the group that's being shielded, too? X
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I can't bear this clamminess under my clothes
Itchy spots driving me mad! Could it be Fibromyalgia related? 
Sorry it's been ages since my last post! 
Just when we think we have it bad (DLA RELATED)
Is it Friday yet?
