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Picture of Topic Creative writing / art

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Topic Creative writing / art

A space to get creative with poems, prose or perhaps upload some artwork

  • 49 conversations

STORIES WOT I WROTE

Started by Anonymous on 18 June 2015 at 07:53

I have written 3 stories, entitled `The Things that they do not tell you, when they tell you that you have cancer.'

The 1st concerns the labarynth of benefits, the 2nd my experience of the side effects of chemotherapy, and the 3rd about the fun that I had in hospital. 

These are written in Word, but I do not seem to be able to send them as attachments.

Comments (7)

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  • Picture of SusieQ
    From SusieQ  
    19 June 2015 at 12:50

    Hi David,

    I've enjoyed reading your stories - although felt sad about your reflections on the medical profession...as there are so many good ones out there too.

    It sounds as though you've had a rough time with it all...and it saying how things are can be therapeutic, especially when it may feel the medical and bureacratic world have let you down. You're very welcome to message me...I don't always have all the answers, but when people and systems have got under our skin...it's sometimes looking at ways to help change the systems can be cathartic. 

    ...and the percentages/chemo side effects issue is a good point, I'll have to do some research on that...

    Best wishes

    Sue


  • From Anonymous
    19 June 2015 at 10:38

    These are records of my personal experiences, which strike chords with many other patients that I have encountered, but not all. Some of these have very different diagnoses, but recognise the similarities with their own experiences.

    I enjoy writing anyway, but was prompted by the almost useless - but voluminous - information provided, particularly on side effects. What is even more annoying is that none show probabilities, and many give conflicting possibilities. This is the inevitable response to the risk averse culture that has developed, in response to `no win, no fee' parasites. I genuinely believe that consent forms should include a disclaimer for anything other than claims for criminal malpractice - as far too many valuable NHS resources are diverted away from the Prme Directive.

    Unless the medical professionals have undergone a similar diagnosis themselves, all that they know is 2nd hand from other patients or authors. The arrogance of some of these towards patients and other staff is a disgrace, and I do not hesitate to point out the error of their ways - if the cap fits.


  • Picture of Robyn
    From Robyn  
    19 June 2015 at 08:12
    Edited on: 19 June 2015 at 08:15

    Thanks for sharing your insight of the world of a cancer patient, the stories contain some tips which others will find useful.  It sounds as if  you came up against quite a few hospital rules /customs which didnt ease your experience.

    I am sure other members will recognise some of them. The slow pace of pharmacy struck a chord with me  ( it's no faster for staff waiting  either :))

    In the spirit of balance I feel I should also point out that the experiences you describe are you personal ones ,different hospitals have different systems  and there are for example many different types of chemotherapy drugs  with different side effects.

    For those of you who are experiencing the difficulties and confusion navigating the benefits system  that David describes our benefits advisor Tom tombenefits' is available you are welceom to  contact him via the conversation forums or  by sending a personal message ( you can do this from his profile page) 

    Reading the 3 stories may have  raised questions in other  areas -  Please dont hesitate to message Sue 'susieq' or me  if you would like to talk things over.

    Best wishes

    Robyn


  • From Anonymous
    18 June 2015 at 18:01

    This is the 3rd.

     

    HOSPITAL 

    PHARMACIES
    Anyone with any experience of hospital pharmacies will know that the wheel of time moves 

    v   e  r   y    s   l   o   w   l   y for them. The logic of keeping vulnerable patients with depressed immunity for hours on end in waiting rooms, to wait for a few boxes of pills, defies belief. The logistical problems that result, as the result of unnecessary catering and overcrowding, simply do not appear to be appreciated. 

     

    I suppose that the predecessors of the modern pharmacist were witches and warlocks. Nothing much has changed. When you are notified about your admission to hospital, you may be asked to bring in ALL your medication. Do not. Only bring in what you need for the first few days, as that is all that you will get when you leave.

     

    ADMISSIONS

    Every admission starts with the addition of a wristband for your identification, and the completion of a sheet of A4, completed by a nurse allegedly on your arrival. This is the start of a folder which will build up during your stay. This folder is you.  If your physical manifestation is apparent for all to see, but your folder is not, you do not exist.

    If, for any reason, you are transferred from one hospital to another, the folder stays at the hospital that you leave. When admitted to Hospital 2, another sheet of A4 will be completed by a nurse on your arrival, and another folder will come into being.

    NOISE AND LIGHT

    You do not go into hospital for a rest. There is ALWAYS noise, and there is ALWAYS light, no matter what time of the day or night.

    FOOD

    Chemo invariably affects your taste buds, and the general hospital fare is very bland at the best of times. This is generally because the addition of salt to meals is discouraged. However, the Asian meals tend to be spicy – and a far better bet.

    Another fact that is not widely publicised is the existence of an enhanced menu, especially for those who need extra nourishment – either because of weight loss, or other identified nutritional needs. In order to qualify, you require authorisation from a nurse – who will generally not tell you about this entitlement.  

    Twice daily, a ‘tea trolley’ – with at least 1 square wheel – will clunk around the ward to dispense a tepid milky concoction. One ruse to get a proper brew to your own taste, is to deliberately ‘miss’ the trolley, then ask a nurse or HCA if you can make your own later. They will invariably do this for you, but not necessarily straight away.

     

    PILLOWS

    These are not exactly fluffy or downy – more like sheets of cardboard - and appear to be at a premium in hospital. I had the temerity to ask for a 2nd on arrival, and was treated as if I had made an indecent proposal. The best way to purloin another one is usually if and when you are transferred by wheelchair to another location.


    LAUNDRY
    If you want to see your personal clothing again, use of the hospital laundry is not a recommended course of action. However, if you can build up a relationship with your cleaner – choccies tend to do the trick – she may offer to do this for you. If all else fails, there is always the shower.

    DOCTORS

    These generally view themselves as God’s Representatives on earth, and tend to treat patients, procedure, and other medical staff with utter disdain. It is often cathartic to prick this pomposity, as they have been known not to check the formalities – i.e. your identity wristband – which can have serious implications. If you are not sure – ASK for clarification as to why they are there, and what they intend to do. It is your right, and they should know. If they do not, there is nothing to prevent you from insisting that they go away to check. I have experienced at least one incident, where they have got it wrong.

    I tend not to take the same approach with nursing staff, who rarely exhibit this kind of arrogance. In any case, it is not wise to vex those whose duties involve poking needles into you.

     

    MEDICATION

    A medication trolley does the rounds 4 times daily, allegedly at the same times. I have had one occasion where 9 tablets were prescribed on the 6am trolley, none on the 9am or 12 noon, then 3 on the 6pm. It required a doctor’s intervention to amend this to 3/round.

     

    PHONES AND TINTERNET

    Each bed is allocated a TV screen with a telephone attached – which costs something like £10/day. Whatever you do, the TV screen will turn itself on automatically at 6am,prsumablky to encourage you to subscribe. Incoming calls on the ‘phone can be ruinously expensive in addition to this. Please note that these abominations are NOT transferable. So, if you have paid in advance, and are moved to another bed/ward, the contract is not transferred with you. Not only that, but the privatised provider is almost impossible to contact, which imposes an additional unpaid duty onto the hard-pressed medical staff. 

    Whilst there may be WiFi available, the IT Jobsworths tend to withhold the password for reasons better known to themselves. As a result, it is advisable to take a dongle with you on admission, if you require internet access. Please note that any device that you may want to plug into a hospital socket must have a valid PAT Test Certificate – and they do check.

     

    HICKMAN LINE

    If your condition requires regular intravenous procedures, it is likely that you will be fitted with a Hickman Line – inserted into your chest between your throat and a nipple. Once in, it is a far more satisfactory means of avoiding fluids being added or taken away, by means of a needle. Do not allow them to insert this instrument of torture unless you are at least sedated, as this procedure is extremely uncomfortable.

    The removal of the Hickman Line takes seconds, and is painless – although there can be plenty of blood at both insertion and removal, until they stitch you up. The scar tends to fade over time.

     

    PORTERS AND AMBULANCE STAFF

    They are another breed who seem to operate to a different Time Zone to the rest of us. The only time that you can rely upon for them not to arrive, is the time that they say that they will – which is infuriating when you are a punctual person with an appointment.

     

    DISCHARGE

    If you think that the Escape Committee has authorised an imminent departure, think again. Hours can elapse between the time that you have been advised that you can leave, and your actual departure time. Factors include waiting for pharmacy, porters, or an ambulance. The amount of unnecessary waiting around is probably the reason why we are called ‘patients’.

     

     

     

     


  • From Anonymous
    18 June 2015 at 17:59

    This is the 2nd.

    SIDE EFFECTS

    Some people sail through chemotherapy, but the majority do suffer side-effects brought about by this or radiotherapy. The leaflets that supposedly explain these are all-encompassing, without any reference to probability, so are all but useless.  As a result, I have a deal with my dedicated nurse at Blackburn Hospital. I will let her know if anything untoward happens, including the symptoms mentioned in the Chemotherapy Book, and she will let me know what action to take.

    As I have Multiple Myeloma (Bone Marrow Cancer) there is no target area to hit, so I have never experienced radiotherapy. There must also be variations in the reactions by individuals to the various chemotherapy  treatment regimes, so I can only write from personal experience.

    TASTE

    Much is made of the `metallic’ taste that accompanies treatment, which is something that I have never experienced. This may well be because this is a reaction to radiotherapy, but I find that I have little or no taste sensation at all. This makes eating a chore, rather than a pleasure, and provides an excuse to skip meals. This is not a good idea. As a result, I have lost nearly 3 stones without really noticing, which has sapped my energy levels as well.

    One thing that I have done is to salvage my slow cooker from the back of the kitchen cupboard. This means that something is bubbling away whether I am at home or not, and saves the effort of having to prepare ingredients (or not) later in the day.

    DIET

    It is possible to have an individual consultation with a dietician at Tessera. One thing of which you should be aware, is that the more alkaline your system is, the more resistant it is to cancer. You can buy test strips to monitor the pH of your pee, and the darker (green) it is the better – the lighter (yellow) means that your system is more acidic. Ironically, lemons help to improve the alkalinity of your system. There is plenty of advice on the internet concerning foods that make your system acidic or alkaline, and the dietician will also provide recommendations. For some reason, I can always taste pineapple, so it is a good job that I like sweet and sour dishes.

    MUSCLE ATROPHY

    No one told me that steroids tend to waste away your muscles. As a result of this, my mobility has been severely restricted – particularly on stairs and upward inclines. I would have much preferred to have taken remedial action before I can hardly get about, as this is something that is easier to remedy before the damage has been done.

    ENERGY LEVELS

    As a consequence of the muscle atrophy, I have the strength of a new-born kitten. For someone who has been physically active all his life, this is an extreme source of frustration. I recently travelled abroad with hand luggage, which only really contained my laptop and medication, and had to split them in order to be able to carry them on each shoulder. Fortunately, because you have to remove your laptop for Customs anyway, no one challenged me – or asked me to pay for an ‘extra’ bag.

    TRAPPED WIND

    This is a curse of chemo, and the only thing that seems to work for me is to have a banana first thing every day. I do not know why it works, but it does. I always have Buscopan to fall back on, but rarely take these since I started on the bananas. There is no elegant way to release wind, and it is not always apparent in which manner that release will take place.

    WAKEFULNESS/TIREDNESS

    The steroid that I take is Dexamethasone, and they do advise you take this as early in the day as possible. This is because it keeps you wide awake, and I struggle to get a proper night’s sleep at the best of times. As a result, I am exhausted on the 3 x 4 day sessions that I take this within each cycle, and tend to sleep for the 2 days after each 4 day session.

    TEETH

    Apart from my accent, the best ways to tell that I am a Mancunian – rather than a local – is that I am over 30, not a granddad, and still have my own teeth. The health of your teeth is apparently an indicator of the health of your heart, and dental infections can have serious cardiac implications. What I have noticed is extreme temperature sensitivity, particularly to cold, which makes brushing my teeth something of an ordeal. However, healthy teeth mean a healthy heart.

    FEET

    The 2 toes next to my big toe, on both feet, have been `frozen’ since the chemo kicked in; not quite pins and needles, but on its way. I have also been told that this is still the case for someone who finished chemo 6 months previously, so I have no idea how long this may last – when I finally reach remission.

    Another weird sensation concerns the soles of my feet, which feel cold – from the inside. If anyone touches them, they cannot understand what I mean – as the outside feels normal.

    GOOD DAYS AND BAD DAYS

    In my experience, good days can turn bad – but bad days will never improve. On a good day, you can more-or-less function as a normal human being; being careful that you do not overextend yourself. My routine is for a maximum of 45 minutes gentle activity, followed by at least 30 minutes of rest to recharge my batteries – brew and biscuit optional.

    On a bad day, you struggle to get out of bed. When these strike, I tend to have `sleepy days’ – which means that I get up until I feel tired again, then go back to bed. Repeat as necessary.  It is important not to let the bad days get you down, and accept that – for that day at least – resistance is futile.

     

    This list is not exhaustive, and I suspect that other patients have their own little stories to tell. What I can state, is that I would not have known about bananas, pineapples, or the alkalinity of my system, had it not been for tips and hints that I got at Tessera.


  • From Anonymous
    18 June 2015 at 17:58

    This is the 1st.

    DIAGNOSIS

    The day that you receive your cancer diagnosis changes your outlook on life for good. It can take some time for this, and its implications, to sink in. However, Health Care Professionals seem to believe that a blinding flash of enlightenment accompanies the diagnosis, so that all patients magically become aware of the information provided below. This is an attempt to provide as much information as possible, in order to make the journey to remission that bit more tolerable.

    TREATMENT

    Some people sail through chemotherapy, but the majority do suffer side-effects brought about by this or radiotherapy. The leaflets that supposedly explain these are all-encompassing, without any reference to probability, so are all but useless. As a result, this becomes an individual voyage of discovery. 

    The object of the exercise is remission, and this may involve several attempts under several different treatment regimes, before it is achieved.

    BENEFITS

    The first thing to understand is that The DWP is not there to help, and their staff seem determined to put obstacles in the way of any application, in order to deter claimants. Persistence is the key, and ALWAYS keep copies of any submissions, as you will inevitably receive similar documents that ask exactly the same questions – some worded slightly differently – in order to maintain consistency. There is excellent advice available at special CAB sessions at Tessera, by someone experienced in the particular needs of cancer patients.

    Employment Support Allowance (ESA)

    Despite its name, this is an entitlement for cancer patients. Many will be unable to continue work, some may be given special dispensation for reduced hours by benign employers. Applications are subject to external assessment from the likes of ATOS, and can take several months to process. If successful, the payments are back-dated to the date of the original claim. This benefit is subject to tax. As a result, it will be taken into account on your annual Personal Allowance.

    Personal independence Payment (PIP)

    This has replaced Disability Living Allowance (DLA). Applications are also subject to external assessment from the likes of ATOS, and can take several months to process. If successful, the payments are back-dated to the date of the original claim. This is a non-taxable benefit.

    Free Boiler

    With both ESA and PIP, you are entitled to an assessment for a free boiler and other house warming help/advice from organisations such as One Stop Shop on Piccadilly Road Burnley. All that is required is t provide evidence of successful claims, and they will come and assess your home and provide advice as to how they can help.

     

    Council Tax

    Patients who live on their own will already be entitled to concessions, but it is worth checking whether you are entitled to further reductions – especially once you have confirmation of the receipt of other benefits.

    Blue Badge

    Cancer treatment can seriously affect the way that you are able to get about, particularly on upward inclines and stairs. It seems that the application for a Blue Badge is no guarantee of success.

    Car Tax

    With a Blue Badge, you may also be entitled to a free tax disc for your car.

    Not all patients may be entitled to the above, and there may be other benefits of which I am unaware. However, if you do not ask, you do not get. If you do not understand, ask for help.

    CANCER SUPPORT NURSES (MacMillan or Marie Curie)

    You are entitled to be allocated a Cancer Support Nurse, although many are allocated to the palliative care of seriously ill patients. You will definitely be provided with an endless stream of booklets, which do provide a wealth of information, but are not exactly light reading. You will also receive a referral to Tessera, which sounds a bit daunting at first, when you realise that these group sessions are at Pendleside Hospice. 

    TESSERA

    Anyone who has been to a Tessera meeting has got at least something out of it, if only the ability to compare notes with others who are in the same boat. There are a number of activities, not all suitable for everyone, but some of the highlights are as follows:-

    CAB Advice – The road to a successful benefit application is long and winding. Help is available to check your submissions, to ensure that nothing is missed in your application.

    Group and Individual Therapies – These include complementary therapies, group and individual sessions on a variety of relevant subjects, exercise classes, even a free lunch.

    Tiredness and Fatigue

    Tiredness is what we experience when we are well, and is remedied by sleep. Fatigue comes about because of the body’s reaction to the disease and the treatment – and can vary from ‘feeling a bit off’ to an inability to get out of bed.

    Energy Tokens

     

    A healthy person can expect to have 10 tokens of energy to expend during a normal day. A cancer patient will be lucky if they have 5, which makes the allocation of that energy important – and the need to rest within activities crucial. Rest is not indolence, it is the opportunity to recharge batteries in order to face the next challenge. 


  • Picture of Robyn
    From Robyn  
    18 June 2015 at 08:20

    Hello David

    Sorry the system can't cope with attachments.  

    You could copy and then paste  them in the conversation topcs or a blog.

    ( the formatting works best if you paste into Notebook or Notepad first and then copy all the text again before pasting into our system)

    You are welcome to message Sue'susieq' or me if you need any help

    I look forward to reading the the stories

    Best wishes

     Robyn


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