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Posted Jan 27, 2009
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Latest reply: Jan 27, 2009
Removed
Posted Jan 27, 2009
This post has been removed.
Discuss this Journal entry [1]
Latest reply: Jan 27, 2009
Monday 20th October 8.11am
Posted Oct 20, 2008
Ok, I have woken up this morning feeling a mixture of emotions, most of them not too good ones.
I woke up very tired and 20 mins later than I normaly do, mainly, due to the fact I was up on my laptop playing Litari on Yahoo...making a complete a*** of myself. I was playing against 'babybuns67' (which sounds like an upcoming porn star) I assumed she would struggle with words longer than 4 letters! But no, that as it turned out was me!. She got complicated words that not only joined other words but added to others her word was parallel to...meaning she got about 97 points a word and I got an average of 7! It was quite humiliating really. At the bottom there is a chat area, I decided to stay quiet, scared she would mock me with one of her long words. 'Babybuns67' used this chat area herself, only the once to say politely "GG thanks" (which translates to good game thanks...)...not exactly my thoughts on the game but at least one of us was enjoying themself. Whats more bewildering isnt the fact this 'porn star' managed to beat me so easily but was that I actualy carried on playing and punishing myself time and time again until the clock struck 3!
I do this all the time, I cant end a day where work follows at a normal time. I have to stretch it out as much as possible. Maybe to postpone getting that little bit older, which is ridiculous as we age, whether we are sleeping or playing a silly online computer game with a 'porn star'
Ok, I have also been finding it hard to sleep, through worry about my eldest son. He has over the years given me many concerns. He was a lovely sweet little boy until he hit 15, his personality was still kind and loving but he became involved in a group of lads that used weed as a form of escape from the pressures of teen life. Mainly in my sons case, bullying. He was bullied when he was 9, so we enrolled him in kick boxing, he got to a brown belt then gave up as he hated it so much. Despite this martial art skill, my son continued to face various types of bullying throughout secondary school. My son is dyspraxic which makes him a target as although he dosnt look different, he sometimes speaks out of turn or gets over sensitive about things others would sweep under the carpet. His teachers actualy told me his brightness would hinder him in life as he wouldnt receive extra help for his dyspraxia at school as a result. My son was predicted to get all A* in his results, but through the introduction of this group of 'friends' and the comfort of discovering weed he decided to stop focusing on his school work and got all C'S instead. Which isnt a particulary bad result considering he didnt work for them, but it is sad he hasnt reached his full potential. It also meant he couldnt stay on at 6th form and take further qualifications (You need B's to stay on at his school). Instead he went to college, it was supposed to be a 2 year course but after a year he gave up, saying he hated it. He changed to an IT course but that was worse. He managed to get a job at the airport as a welcome host for seasonal work but kept ignoring his text messages to come into work on certain busy days...so the calls got fewer and fewer
He has never been good with money, he borrowed from his gran & me and even his friends. (took us a while to figure out he was doing weed and thats what he needed the money for!....he was such a convinving liar...still is)
He signed up to a temping agency (I forced him too, as he was staying in bed during the day and doing weed at night...he denied it, but we could tell). We stopped lending him money, but he had friends that would always help him out. He was given a job in accounts. It was supposed to be until christmas (this year) but due to him having a pre-booked family holiday in the middle of his assignment, which I had booked a year ago, he was replaced after his holiday in May).
In dispair, his dad (who once chucked him out as he was worried about the influence his 'bad habits' would have on his younger brother and sister) lined him up an apprentiship as an electrician, this was a massive turnaround for him, he has one day at college a week and the rest of the time he is working for a building firm.
I said the job was the turning point but actualy I wonder if it was the learning to drive that did it. Although also a condition of the job that he had to learn to drive that pushed him. He attended a weeks intensive driving course and passed first time. His gran got him a car and he loves driving now. He has just taken his pass plus to help him reduce his insurance premiums and also to make him a safe driver on motorways etc. He exceeded a lot of the points and I am so proud of him.
He passed his driving test on August 25th and he gave up weed the same day! He was 19 on 11th september and thats also the day his car arrived.
Well, this is all positive you might think, why should I have concerns about a lad who has turned his life around so well recently.
In his life, he has this young lady, she isnt a bad person, but She crys daily, they fight daily, and because they currently live in my home during the week and at her parents at weekends...its as if we are all living the turbulence of the relationship with them.
Everyone tells me, they are young, it wont last dont worry, but its been 15 months now and shows no signs of ending anytime soon. It dosnt matter if they stay together, its their life and they are old enough to make their own choices in love, but to do it so pubilicly in our home is making me angry.
I know I am going on about this too much, my dad did the same with me and my boyfriend at the same age (who I am still with). In fact my son said to me this weekend, I think you will have to get used to her, as we are going to be together a long time, like you and dad.
Its time for them to move out, but its hard for me to suggest as I do love my son dearly, and he hasnt really got the money to afford to rent a place (apprentiship pay is very bad), she works part time and neither of them manage their money well. live on take outs, pay no rent etc. I will start by requesting rent I think, and then they may decide to move out. Its not fair on the rest of the family to hear their fights.
But then am I forcing him to make a comitment to her when he isnt really ready.
I have a lot more to tell today...will do so later on...
bye for now
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Latest reply: Oct 20, 2008
My partners fight for life and Justice
Posted Apr 20, 2007
David my partner - background information leading to his recent life threatening Illness
• 2001 David has keyhole surgery at Gatwick Park Hospital to trim cartilage from his knee. This is paid for privately.
• The surgeon discovers during the keyhole surgery that David has a torn ligament in his knee and will require more extensive surgery. He advised him that there would be a long wait for the surgery if done under the NHS and advised him to pay privately for the operation, unfortunately this was too expensive and David was unable to afford it.
• The Surgeon recommended David exercise to build up the muscle surrounding the damaged ligament to try and avoid surgery
• June 6th 2002 after returning to the consultant suffering with pain in his knee, David is added to the waiting list for the knee operation to repair his torn ligament.
• David receives information from the waiting list co-ordinator that no NHS hospitals are available and asked him if he would mind travelling further a field to be treated at Goring Hall Hospital on Tuesday 10th July.
• David asked to have a pre-op assessment as he wasn’t initially offered one and felt he needed more information about his operation and also that the hospital should be informed of his family medical history before going ahead with the operation.
• David was offered an over the phone assessment, but asked to be seen in person as he felt this was not thorough enough.
• Tuesday June 10th David has a pre-op assessment at Goring Hall Hospital, a urine test is taken but no blood tests despite the information he gave concerning his family history of embolisms. (His dad and granddad died in their mid 40s – 50’s of blocked arteries, his cousin had a embolism in her brain, his sister suffered a DVT after a flight)
• Friday 13th June 2003 David is referred to Goring Hall Hospital under the care of the NHS, as no other local NHS hospitals are available.
• The surgeon carries out the operation. It is discovered that David’s ligament is not torn but is actually snapped and required a tendon to be grafted in the knee to make a new ligament.
• Sunday 15th June David is discharged from Goring Hall Hospital despite a high temperature
• Monday 7th July 2003 2.30am David Harris agonising back and chest pains plus shortness of breath.
• David’s Partner calls pound hill surgery and is re-direct to Croydon Call centre at approximately 2.30 am.
• 3.15 am Doctor on Duty, calls to talks to David over the phone, David mentions the recent knee surgery, back pain, chest pain and shortness of breath. The doctor says “you sound alright to me, I wont come out to see you, it sounds like a panic attack, if you are still feeling unwell in the morning see your GP”
• Monday 7th July 8.30 am David calls the GP, he asks for an emergency appointment and is told by the receptionist he needs to be assessed by triage before he can be given an appointment
• The GP from Pound Hill Surgery phones David and encourages him to come in at 10am
• David sees his GP at Pound Hill Surgery, She carries out a urine test which is normal, but suggests David go to casualty for a more thorough check up as she is concerned.
• At Casualty David is assessed and taken through to Re-suss where after extensive tests, x-rays etc he is diagnosed with a suspected pulmonary embolism and pneumonia as a result of the recent knee operation
• He is questioned as to what anti coagulants he received from Goring Hall Hospital, to which the answer is none.
• David is admitted to the Acute Assessment Unit at Crawley Hospital under the care of the Heart Specialist - After looking at Davids X-ray and blood test results the specialist confirms pneumonia and a suspected Pulmonary Embolism
• David has a scan on his knee and they discover another 2 blood clots in addition to the one on his lung, one behind the operation site and one on his thigh.
• After 2 nights in the Acute Assessment Unit David is transferred to the Vanguard Ward (still at Crawley Hospital) he is now under a different doctor. (Lung and Chest specialist)
• David remained extremely ill and in the early stages he required 24 hour oxygen, intravenous antibiotics, oral antibiotics, dia morphine, heparin injections, Warfarin and paracetamol (to keep his temperature down), He also had his lung aspirated and the fluid drained of. He has been told the infection in his lung will probably take another 6 weeks to clear fully.
• David was on one occasion offered a second dose of warfarin within an hour of receiving his first dose, no one had realised he had already been given it.
• David collapsed with breathing difficulties during his second week in the Vanguard Ward in Crawley. I mentioned that David was also an asthmatic and she said “Oh I didn’t know that. she then gave him a nebuliser in addition to the oxygen. The information about David’s asthma was given on admission to casualty and also when questioned about which medication he was taking.
• The Heart and Lung Specialist informed David that this illness was a direct result of the recent knee surgery.
• David was finally discharged from Crawley Hospital on 24th July nearly 3 weeks after he was admitted to hospital. He is on 6 months of daily warfarin and his breathing is still not as good as it should be.
In reply to this we received 2 letters from East Surrey trust.
The first letter informed us that an investigation was being carried out into the bullet points raised above. The second letter said that a reply from Goring Hall Hospital had been received by them as a result of the ongoing investigation. They also advised that Goring Hall had informed them that a blood test was indeed carried out at the pre-op assessment and that no information was given regarding Davids family history of Blood clots.
We contacted East Surrey again via telephone who were not in the least surprised that we were unhappy with the result. They advised us to write directly to Goring Hall Hospital. Which we did.
This time a reply confirmed that in fact no blood test was carried out at the pre-op assessment but still denied the other matters mentioned above.
We have since arranged a meeting with Goring Hall Hospital to clarify the matter
David received sympathy from the Surgeon and management during this meeting but no apology or admittance of any wrong doing.
Discuss this Journal entry [1]
Latest reply: Apr 20, 2007
My fathers illness
Posted Apr 20, 2007
Suspected Prostate Problems
1999 – visited Beneden hospital with suspected Prostatits he has his PSA Levels checked and was prescribed tamsulosin. My father was having problems passing water.
Rectal bleed – Diverticulitus
2001 – admitted to hospital with a rectal bleed. Diagnosed with Diverticulitis after a colonoscopy and received a blood transfusion for the blood loss
Anaemia and Angina + cancer diagnosis
10 months later –he was re-admitted to hospital after suffering from Angina and Anaemia. The Heart Consultant saw him. He received another blood transfusion and was sent to St Georges Hospital in Tooting for a check up on his heart after a problem was identified on the treadmill. After this test showed no problem with his heart he was transferred by ambulance back to Crawley hospital (6 week stay in total) The consultant said that when patients become Anaemic the cause is often a bleed somewhere in the body and he spoke to the Bowel consultant to arrange another colonoscopy.…this time the consultant spotted an ulcerated polyp. My father was told it looked harmless or in the very early stages of cancer, which was treatable, and the biopsy was sent off for testing.
Bad news
Results back…it is in fact a grade c cancer of the bowel. Which is the size of a grapefruit! It was in the bowel very near the sequel. (stomach opening)
Focus trial - chemotherapy
My father visited the chief Oncologist at Guildford Hospital where he was put on the Focus trial. If he was lucky he would receive the newest more expensive drug…unfortunately the computer did not select his name and he was given standard chemotherapy.
Good news
When his course was completed he had a scan, which showed that the cancer had halved in size so my father could now have major surgery to remove the remainder of the cancer
First indications of problems ahead
Whilst waiting for the operation my father noticed blood in his urine. He mentioned this to the consultant and after further investigations it was noted that the tumour had penetrated through the bowel into his bladder.
He was told he may need to have his bladder as well as part of his bowel removed during the operation.
Luckily they saved 2 thirds of his bladder so he didn’t need a urology bag.
Both Urologist and Bowel consultant were present during the surgery. They said it was a success
Afterwards he had further chemotherapy this time the expensive private drug that he was promised if he took part in the focus trial
Follow up – good news
He returned to Guildford hospital after 6 months for a follow up and was informed he was one of their success stories as he was doing well and there was no sign of the cancer returning. The blood tests were clear and the other tests and scans for secondarys were all negative.
Warning signs – further investigations
However, after a further 6 months he started to pass more blood in his urine. He was re-referred by his GP to his consultant who carried out a cystoscopy and found a suspected secondary in his bladder. After confirmatory tests showed this was indeed a secondary to the bowel cancer it was removed and followed up with radiotherapy.
He was advised to return for regular check ups every 18 months on his bladder as this is the time it normally takes for secondaries to reappear in this area
Bowel Cancer number 2
Later on during a regular check up he had a colonoscopy, which unfortunately showed a new primary cancer in the lower part of the bowel. This was first thought to be a secondary cancer but when tested it was a primary cancer much lower down in the bowel unconnected to the first one.
The choices
My father was given 2 choices on how to deal with this new cancer. He could have his entire bowel removed and an illeostomy bag fitted or he could do nothing. He was advised to think about his options for 2-3 weeks. My father asked how long he would have left if he did nothing. Approximately 9 months was the reply. My father decided to have the surgery.
Another problem on the horizon
At about the same time as this second cancer was diagnosed my father lost the ability to pass urine. He visited his GP and was told that treating his bowel cancer was a priority over this new problem and he was fitted with a catheter (this catheter was left in place for over 6 months)
The operation
My dad had his operation in November 2004. They removed his entire bowel and he was given a stoma and an illeostomy bag. He stayed in hospital for nearly a month as he needed several blood transfusions and developed a chest infection after the operation.
The Fall
When my father came home from hospital he was very weak. He weighed 8 stone 7 pounds. He began to recover and was encouraged to walk and rake gentle exercise. My father walked to the local shops with my mother. He waved to a neighbour slipped and fell. He had fractured his arm.
My mums routine
After the fall my father was unable to use his right hand. My mother had to take charge of emptying both his illeostomy bag and his catheter. This meant 6-10 times a day around the clock. My mother never had a full nights sleep. Luckily she is rarely ill herself.
Bladder problems
Still coming to terms with his operation and his new bag, my fathers concern over the pain he felt in his bladder area increased. He was on permanent antibiotics for recurring infections. In the beginning the district nurse visited weekly to help with flushing his bladder etc. These visits dwindled to nothing and my mum was left on her own to cope with my dads problems with his catheter. His new consultant tried several TWOCS (Trials without catheter) but they all failed. He was put on a waiting list to have an urgent TURP…. unfortunately this urgent waiting list was very long so the family persuaded my father to have it done privately. The same surgeon was available privately and as he already new my fathers history he was an ideal person to carry out this operation. At a cost of over £4000 we felt the private option was still the best one for my father and went ahead with the operation at Gatwick Park Bupa Hospital.
Nausea and sickness
Before the operation, my father had taken charge of emptying his bags himself. My mother to get a break started to go out to play bridge twice a week…she always took her mobile in case my father needed to contact her. 3 days before my fathers operation my mother and I were playing bridge when the phone rang. It was my father. My mum couldn’t make out what he was saying. I rang my partner to go round to check on him as we live in the same road and we rushed home ourselves. When we got home my dad was ok. Dave was in the bathroom clearing up. My father had been violently sick but was feeling better. He thought it was to do with broccoli! (it is now clear it is a symptom of what was yet to come.)
TURP
In April 2005 my father had a TURP. He had been identified as a high risk at the pre-operative assessment so he was given a Spinal Block rather than a General Anaesthetic. After the operation the consultant informed him that his bladder was clear of cancer but the reason for his problem passing water was a growth in the urethra. He had this growth removed during the operation and he is now awaiting results to see if it’s malignant or benign. He is however in very good spirits and seems to … he is planning holidays etc and thinking of life with renewed optimism
Cramps and spasms
My sister called my father to see how he was on Saturday 1st May. He had been discharged from hospital 3 days after his TURP on Thursday. He complained of having spasms and cramps in his bladder…(another symptom of what was to come)
Calling an ambulance
The following morning Sunday 2nd May 2005 my mother appeared in my bedroom (We live in the same street) She said she was having problems with my father. She said something was seriously wrong with him that he had called out and was having some kind of fit. I told her to call an ambulance, pulled on some clothes and rushed over to my parent’s house.
My father was sitting up in bed wide eyed with fear. His face showed no recognition when I walked in the room. I cuddled him until the paramedics arrived. Once dad saw them in their green uniforms he screamed…”Who are you…who are you!” he was clearly terrified and had no idea what was going on. The paramedics asked my father his age and several other questions to which they just got blank looks
I went with my father in the ambulance whilst my mum followed in her car.
Arrival in A&E
When we arrived in A & E my father looked at me and said “77” I realised he had been thinking for the whole 20 min journey to hospital about the question the paramedic had asked him in his house…he had managed to tell them his age..!
Coughing up blood
My father was coughing up large amounts of blood but this was soon discovered to be coming from his tongue, which he had bitten during the fit. He was wired up to the heart monitor and it was discovered that he had a very fast heart beat. He was extremely thirsty and with my help managed to drink 5 cups of water. He had very lucid moments where he made sense….at one point he asked for some Codeine Phosphate for the pain on the tip of his tongue” using that exact phrase…at other times he was completely unaware of his surroundings and looked vacantly ahead.
Moving wards
Eventually he drifted of to sleep on the trolley…he was then moved to the Observation ward…the nurses asked my mum, sister and me to wait while they sorted him out in the new ward…
Seizure number 2
When they called us in. we pulled back the curtain and my dad started screaming and fitting again…his whole body was convulsing and his eyes were wide from fear…the nurses and doctors gathered round him. We were sent away until the fit subsided.
20mg Diazepam!
When we returned my father was still continually moving around. So much so that despite 20mg of Diazepam it required me, my sister and my mum plus a male nurse to hold him down whilst they wired him up and administered fluids etc…it was at this stage they gave him an intravenous solution of calcium…followed by one of Magnesium.
Couldn’t wake up
The doctors came to see my father and were discussing him with us. They had lost his notes so we had to fill them in on his history (which is one reason for making your own notes!) . The consultant was concerned that she couldn’t rouse my father and the junior doctor showed the same concern when she took and arterial blood sample and he didn’t respond (this is normally very painful) . The consultant suggested that maybe they shouldn’t wait to do the brain scan as she couldn’t wake him up. Then the other doctor realised that he had had 20mg Diazepam. So they let him sleep it off
He was still bringing up blood as he had bitten his tongue a second time in the later seizure.
The hospital couldn’t cope
My mum was asked to stay the night with my father as otherwise a nurse would have to have sat by his bed all night.
Moving wards again
He was moved during the night to the Medical assessment unit. My mother slept in a chair by his bed…at about 4am he came round and asked where he was and where were his curtains…he had no memory of the last 24 hours and could again recognise his family.
Moving wards once more
The following day he was moved to the Abinger Ward. He appears much better since receiving the supplements. A number of other strange things have occurred. He has lost his shaky hands, which he developed about 6 months ago after the illeostomy. He can now write clearly and hold a cup without spilling it. He has lost his compulsive behaviour, which used to drive my poor mum round the bend. He would be continually checking his urine bag… that oddly enough is what he did to extreme just after the fit but before the infusion of magnesium (we have later discovered that personality disorders are common in deficiencies of magnesium) His catheter is also working better. Apparently when your body is depleted of magnesium the kidneys close down and reduce their production of uric acid in a bid to hold on to the mineral. When the magnesium is abundant in the system they work properly again. This may be why he only passed very small amounts of urine despite drinking a lot before the fits.
Anxious one week wait for scan
He is now waiting to have a brain scan. My father has been in the Abinger ward for over a week now and had no further treatment except calcium tablets. He is very depressed though as he complains the ward is full of old and sick people! He also has a very painful tongue from having bitten it badly twice. He has been given bonjella for it.
Other concerns and comments
My father was concerned about missing his TWOC (trial without catheter) at Gatwick Park Hospital on Monday 9th May…but East Surrey have said they will let him have it removed whilst he is there. He also had his brain scan on 9th May. He will get the results on the 10th or 11th May. My mum is worried that he will be discharged from hospital without treatment to prevent further seizures. We have read too much on the Internet. All case histories if left without further regular intravenous magnesium and calcium supplements go on to have further attacks. It looks as if they are all discharged after the first fit as a trial and then receive treatment afterwards…this doesn’t seem right. Patients should receive treatment after the first attack to prevent it happening again. (Only my opinion but my mum and dad cant go through this all again a couple of months down the line)
Another concern is the 6-10 times a day he has to empty his illeostomy bag. He already takes loperamide to try and stop this but it hasn’t worked
Its out!
My father has at last had his catheter removed. He is able to pass water himself again. He was surprised to find there was no pain, which he had been told to expect after the TURP operation. The 2-week healing period must have worked well. He has to empty his bladder every hour at the moment but that is apparently normal. He is also slightly incontinent which apparently in 95% of cases will be only temporary.
Contacts
I have spoken to his stoma nurse Jackie and she was shocked to learn about my father’s seizures and hospitalisation She has asked me the ward he is on and has promised to visit him.
My father is at the moment hoping to be out of hospital by his birthday on 12th may. (today is 10th)
More waiting
We have been informed we have at least another week to wait before the results of the growth that was removed from the urethra during the TURP will be ready. So we are waiting for the brain scan results and the Histology reports.
Something to look forward to
My parents are hoping to go on holiday to the Forest of Dean with my sister and her family on 25th May. Fingers crossed that my dad is well enough to go.
Searching for the results
On 16th May we still hadn’t heard the results of my dads operation so my mother contacted the urologists secretary to ask about the results of the histology on the growth he had removed 3 weeks ago. She was advised that a letter had been passed to his GP and a copy sent to the bowel consultant on 9th May. My mum rang the GP but was hopeful of good news as they hadn’t contacted her in a hurry. She was advised to make an appointment for my father to hear the results and recommended he had a family member with him.
GP Appointment for results
I took the day off work and went with him and my mum. The GP looked blankly at us when we filed into her surgery. She clearly had no idea why we were there. We explained about the letter and she brought it up on her computer. From where I was standing I could read the last paragraph of the letter. “Very aggressive cancer, poor prognosis” The GP looked very embarrassed and asked why we hadn’t been called back to the Hospital for our results. She then gave my father the news that his bladder and prostate were clear of cancer but the growth was a secondary from the bowel. We asked her what to do now. She said she would make my father her priority for the day and would contact Guildford Hospital and call us with the details later that day. My dad apologised to the GP for her having to give him the bad news.
Anger and confusion
When we got home I called my sister to let her know of the latest news. We were all very upset and felt let down by many people in both the private and NHS sectors. Why hadn’t the operation been done in September? Why hadn’t the urologist informed my father of the results earlier? Why did the GP not know anything about our reason for being there? Why did the urologist send the information to the Bowel surgeon instead of the oncologist…many more questions but basically we feel as a family that between them and their incompetence they have given my father a death sentence.
The telephone call
My fathers GP called later the same day and told us that the letter actually stated that the growth was only partially removed and that the prostate did also show signs of having the same cancerous cells as well. Guildford hospital has been informed and an appointment has been made for my father to see an oncologist on 26th May.
The letter
My father was given 2 copies of the letter. One to take to Guildford and one addressed to himself. I dreaded him opening it, as I knew the wording would frighten him. He opened it, read it and looked up sadly saying “There’s no hope then”……I am so angry, why did he have to read such clinical terms.
Cancelled the holiday
My father decided to cancel the holiday in the hope he will be offered treatment for this latest bout of cancer. He is also passing blood in his water again. I am sad for him and my mum as I think the holiday would have done them good and there is no guarantee that he will be offered any treatment.
Build up to a possible fit
There are signs again that indicate my dad is heading for another fit. He is becoming irrational, his hands are shaking, he is losing weight and displaying odd behaviour just like before the first 2 fits. EG he complained to my mum that all the toilet seats were cracked and needed replacing, (which they are not) he also is refusing to eat meals…he is only eating little and often which was another thing he did before, and he is complaining of feeling nauseas
Call to Cancer Backup
My sister rang this organisation to see about enlisting the help of Macmillan nurses for my father. She was advised that we would need to contact our GP for a referral and also after informing them about my fathers symptoms told us to ask for an earlier appointment for my dad to have his blood test. (it was due in 2 weeks)
The GP discussion
As we didn’t hear from the GP despite leaving several messages we called again only to discover the receptionist had not informed the GP but told the District Nurse instead!! We again explained the situation and she arranged for my dad to have a blood test on 27th May! My sister called to say she had arranged for the hospice nurse to call as Macmillan nurses are not available in our area. My dad is hoping to stay at home as much as possible but knowing the hospice and advice are just a phone call away is very reassuring for my mum who up till now has been coping mainly on her own. Dad had to sign a form to give permission for his family to discuss his case with medical professionals without him being present.
Meeting at Guildford
26th May, my mum has spoken to me this morning. She is worried my father is very near another fit and says he will have to sit in the back of the car on the way to Guildford. She fears if he has a fit whilst she was driving, they will all be killed if she loses control of the car.
Guildford news
My father is told that he will have to have a scan to see where the cancer is and what type of palative chemotherapy is suitable to treat it. At first the oncologist thought there were no new drugs available that he could try and then the nurse mentioned that he was taking part in the Focus trial so could have Oxaplatin and 5FU. There was talk about him taking tablets as opposed to having a line put in. My dad was pleased about this but my mum was concerned that this would mean the chemo wasn’t absorbed properly due to his illiostomy bag and wouldnt be so effective. It is very hard for my mother as she has to accept my fathers decisions on his treatment. If she offers advice he sees her as interfering. Underneath he realises how helpful and wonderful my mum has been throughout his illness but the arguments are a result of stress and anxiety suffered by both of them.
My father was very shaky at Guildford and he had a blood test to check his levels of Magnesium
Guildford Infusion
My fathers levels were low and Guildford Hospital managed to arrange for him to go in for a day and have a 3 hour infusion to sort him out
Guildford scan
My father had a scan to show up which parts of his body where affected by the cancer. The results of this showed changing cells in his pelvic area and also suspicious cells in his lungs. Chemotherapy was to be arranged after his kidney function test. My father was very shaky again so had another blood test for his magnesium levels whilst at Guildford for his scan results.
Home from Guildford
Almost as soon as my father got indoors from Guildford Hospital the phone rang. It was Guildford calling to tell my father to go straight to East Surrey Hospital for an infusion as his blood test results show he has dangerously low magnesium levels. We were told that East Surrey A&E where expecting him.
East Surrey A&E
We arrived at East Surrey A&E department at 3.30pm and gave in my fathers details to the receptionist. We informed her that the Doctors here were expecting him for urgent treatment. After about 40 minutes my father was assessed by a triage nurse and taken through to the main casualty waiting area. He was asked to sit down and wait to be seen.
After about another hour my father was taken into a cubicle and put on a trolley and had his heart monitored and more blood taken.
After another hour he was moved from one bay in casualty to another bay still on a trolley and still not given his URGENT infusion
Later still my father was moved to another trolley in another bay
Eventually 7 and a half hours after arriving in A&E my father was seen by a doctor. The doctor was very apologetic and kind to my father about the long wait. She told my father an infusion would be set up shortly for him to receive the magnesium
During this time my father was not offered any food and drink, which when you consider that he was admitted for a nutrition deficiency is a bit shocking. I rushed around the hospital at midnight looking for a vending machine that sold sandwiches and purchased them and a drink which he was grateful for
Then he at last received his infusion.
My father was admitted over night, they changed him to a bed but still in A&E.
The Next week
My father was kept in the short stay ward at East Surrey for 5 days and had 2 further infusions as his magnesium levels showed that he was not retaining the magnesium in his body. He felt much better after the infusions and was almost like his old self again.
In the same ward there was a patient suffering from dementia. This patient slept during the day and roamed the ward at night taking patients belongings. At one point he got into bed with another seriously ill patient. The family of the other patient complained that this was not safe but this remark was ignored.
Missed his appointment at Guildford
Unfortunately due to being at East Surrey hospital for 5 days my dad was unable to attend his appointment to have his kidneys checked to ensure he could go ahead with the chemotherapy. Another appointment was made for this check.
Kidneys ok….magnesiums not
My father arrived to start his chemotherapy at Guildford on Monday 27th June only to be told that his magnesium levels were too low to go ahead. His levels would need to be better before he could start it. He was told to come back the following Monday
I stopped this diary of his treatment at this stage. I wish I hadnt as looking back its amazing how far he has come and how things have moved on.
It is April 2007 and my father is still alive. He has a permanent catheter as the tumour is partialy blocking his uretha. There is talk of him having a procedure to relocate the catheter to his stomach but we have been advised this is likely to mean the cancer will spread to this area as well. The chemotherapy (oxiplatin) wasnt continued as my fathers kidneys didnt tolerate it very well and he has been on palative care for the past 2 years. My sister spoke last week to the urologist about why my father hadnt been given the procedure to relieve his bladder earlier and was told that they didnt expect my father to still be here....! My father had 12 months ago been requested to have a camera inserted in his bladder to see what was going on and help make him more comfortable. He had arrived at the hospital after a night of fasting and was gowned up when the consultant told him that they were not going to put him through this prodcedure....(my dad wishes they had then he may be able to go out and get on with the last few months of his life)
My father has retained his mental alertness and continues to play his role in the family. Unfortunately he has to play this role from his bedroom as he is uncomfortable to do anything other than lie down with his permamanent catheter in. My mother continues her role as primary carer
We recently upgraded his pain releif from paracetamol and codeine to oramorph. Before that my father was often wimpering in pain. The hospice eventualy let us have a prescription to help him through this painful bladder spasms.
My mother turns 70 on 1st June and we would love to do something for her... but unfortunately it seems inappropriate whilst my father is so ill. He wont allow anyone but my mother to tend to his needs..he is a very private man.
My mum is up 3-4 times a night changing his sheets, flushing his catheter or taking him to hospital when it gets blocked.
I will report more another day
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Latest reply: Apr 20, 2007
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cheerful pessimist
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