h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

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

My father was just the same (a private man) but for the final two weeks of his cancer he was in the Hospice to give my mother a break. She is 87. It's 5 months today since he lost his valient fight and I veer between relief that he's no longer in pain and my mother can relax now and enjoy the time she has left, and missing him so much it breaks my heart.

I wish you strength to endure the coming pain.

Thank you for your post Galaxy Babe

I read your journal recently about the Colonoscopy procedure. It was an eye opener and very informative.

I must confess it was very therapeutic making a log of my fathers illness and proved helpful on the numerous occassions when the hospital have mislayed his notes. He is in no ways an isolated case (unfortunately)

I have mixed feelings about the future. In one way I think positively that once he is no longer suffering my mother can reclaim her own life again, but he was/is such a large part of her life I think she will find it very hard. In another way, because he was diagnosed with agressive cancer so long ago I almost dont beleive he will ever leave us.. After the first diagnosis we all helped him in his fight against it, Researching alternative treatments, even buying a juicer to make special vitamin veg and fruit juices to help him recover from the chemo etc and then when we received the poor prognosis, it was too late for further treatment we all resigned ourselves to the fact my dear father would not have long left with us...but as the weeks turned into months, turned into years I find myself beleiving the consultant may just have got it wrong and he isnt dying after all.... Silly I know but its hard to prepare yourself constantly when the person you love is so mentaly able..

Love to you and yours Galaxy
xxxx

I don't really know what to say.
I wish you all the best

Thank you RT_JFC


I am pleased my journal on the Coloscopy helped you. What I did was experience it, write about it, then prepared an entry for the EG (as impersonal as possible, out of respect for all the other people who would be reading it)

It's now edited: A19645220

I've also had a barium enema which I am still getting around to writing up!

Please forgive me if I tell you your articles in Peer Review aren't suitable for the Edited Guide as they are, I would advise you to withdraw them because the comments you might get would upset you,

The <./>writing-guidelines</.> must be followed for entries destined for the Edited Guide. Your entry on your father would be acceptable for <./>thepost</.> which mine was: A20980956
If you withdraw it from Peer Review I will show you how to submit it to The Post.

If you would like some help putting together an article on bowel cancer, I would be pleased to help you

Annie/GB

Hi Annie

How do I withdraw it from peer review please

thank you for taking the time to help me

Jennyx

Click on the Peer Review banner at the top of this page. Scroll down and you will see all the entries in Peer Review. Your two entries have an "x" beside them (or a "remove from PR button depending on which skin you're in). Follow the removal process.

I have to go offline now but I will look here next time I log in to see if you require any more assistance.

keep your chin up

Well I have deleted it, or so it seems...but there were 2 identical entrys and it wouldnt let me delete one of them. It told me it had gone for review and not possible to edit or delete!!

I will be online later

Thanks again

xx

How strange. I can get them removed via the Scouts group if you like

Would you like to submit your father's story to The Post, and how do you feel about co-authoring an entry with me on Bowel Cancer?

Hi Ann

Sorry for the delay in replying. I dont have online access at weekends.

I would be honoured to co-author a piece on bowel cancer with you.

Thanks again for all your help

Jennyx

My father sadly passed away on 2nd December 2007 in our local hospice

He is now out of pain