LIVING WITH PANCREATIC CANCER - THE BOOK

My entry last year after my dear friend passed away I thought would be my last, but I have just written a book, using this blog diary. Reading it back a year later I was able to trigger memories and incidence not previously recorded. I'm hoping that by telling my story it might help others going through similar circumstances, in caring for someone with a terminal illness.

If you would like to purchase the book copy and past this link, I hope you will find it useful. https://www.createspace.com/4299892. This book can also be purchased on Amazon.

IT'S ALL OVER NOW

After my friend had been sedated she remained very peaceful. I had a visit from the Hospice nurses on 13 th November, with a view to helping me wash and change  her. 

Whilst they were here my friend's breathing pattern changed and it was assumed that the end was very near as no pulse could be felt in any of her limbs. This was around 1 pm. The nurses kindly offered to stay with me which I accepted, not really wishing to be alone.

But my friend had her own ideas on the appropriate time to go. After an hour and no change, the nurses had to go as they had other patients to see.

So there I am on my own not knowing when the end would come. I kept popping in and out and telling my friend that it was all right to go, that myself and our two dogs would be fine and to stop fighting the inevitable. This went on for another 2 hours.

I'd just popped out for a couple of minutes and when I came back she had passed. It was 4 pm.

I lit a candle and burnt some incense sticks and put on a Music for Healing CD and asked Great Spirit to help my friend over to the other side.

I then phoned the surgery and waited for the doctor to come and confirm death. I then phoned the undertaker.

At 6 pm on Tuesday 13 th November my friend left her home for the last time. But she did get her last wish which was to die in her own bed at home.

I hope my diary of events has helped some of you out there going through similar circumstances. And for those of you who are just reading this out of curiosity I hope you have found it interesting.

This is my last entry.

Love and light  to you All

MY CRISIS POINT

The 1oth and 11th of November were my crisis point. My friend took a dramatic turn for the worse. Although only managing to pee once in 24 hours, she became incontinent with her bowels and at the same time seemed to become confused with similar symptoms to Alzheimer's Disease.

I must admit that this was my breaking point. With an un-co-operative, body that needed cleaning and changing after opening her bowels, I admit I struggled and of course it always happens at weekends.

By Monday morning I was a sobbing wreck and knew I needed help. After a few phone calls, the troops arrived doctors, nurses I had them all.

My friend was fitted with a catheter and a syringe pump, making life a whole lot easier.

Monday night into Tuesday morning  was a restless night with my friend grunting very loudly obviously in a state of distress, so today the nurses returned to administer a sedative which had the desired effect and has calmed her.

WHAT NO-ONE TELLS YOU ABOUT PANCREATIC CANCER

It is the 11th November, Remembrance Sunday. My friend continues the downward spiral. What they don't tell you, (by they I mean the medical profession) is exactly what lies ahead for the dying Pancreatic Cancer patient.

I suppose I understand why they don't tell the patient, but I do think they should explain to the carer or family what to expect. I have managed to confirm some stuff on the Internet, but the reality of living through this, is something quite different.

So what should you expect as the carer or family? I will be very explicit. 

• Your loved one will stop eating, they will still drink, but very small amounts, but this will eventually stop. 

• They will have a struggle to pass urine, until they will only manage 1 wee a day with up to (so far in my case) 32 hours between wees. 

• Their speech will become often slurred and unintelligible. 

• They present similar symptoms to Alzheimer's Disease, they become confused and in my case keep calling out for their 'Mummy', who passed away some 40 years ago.

• They become agitated and frustrated because they can not make themselves understood.

• They will become incontinent, in my case the bowels and not realise that they want to go to the toilet.

• The eyes become distant and manifest an appearance of fear.

• They can no longer support themselves at all as they are so weak, because they are skin and bone and no longer have the muscles to support them.

• They become almost a stranger to you as they are no longer the person they were.

Coping with this stage of the illness  for me is by far the worst part. I wish someone had warned me. I do not know how anyone can still survive when every bone in their body is exposed through a thin layer of skin and their internal organs are obviously not functioning properly, if at all.

Please may this all end soon for my friends sake. If she could really understand what is happening to her, she would be appalled.

NEARING THE END

Today 8th November we had an unexpected visit from the District nurse. She came to take my friends blood pressure and whilst she was here I filled her in on what had been happening and the continued deterioration.

She has arranged for some Morphine to ease pain during the night and is going to arrange for a Doctor to call other wise when the time comes my friend will have to have a post mortem. 

Apparently even though she is under the hospital doctor, she still needs to be seen by the G.P. which so far hasn't happened. This has all come about since the Harold Shipman case. Whilst writing this the phone has just rung to confirm the G.P will visit next Friday 16th November. I hope that won't be too late.

I took the time to speak to the nurse out of my friends earshot and asked her what she thought of the situation. She confirmed what I already knew anyway, that this is the beginning of the end.

I hope for my friends sake that it isn't a long drawn out affair and that end is quick and peaceful. 

THE DETERIORATION WORSENS

It is now 3rd November and my friend is deteriorating further. The only time she spends out of bed now is to go to the toilet and for me to help her wash and change her pyjamas. I'm now getting up with her two or three times during the night when she needs to go to the toilet.

She has the permanent shakes, a bit like the DT's , but I guess that is lack of sustenance. She is now eating even less, as if that were possible, as every time she puts things in her mouth she retches. 

I'm becoming increasingly concerned about the retching as she even does this when taking her tablets and drinking. She wants to die at home, but if this continues to the point where she is unable to take her tablets for the pain etc, and is no longer able to take on fluids, then I'm unsure whether this will be possible.

The painkillers still only take the edge off her pain, so she has constant discomfort. I'm sure she has given up, because even when I try to encourage her and  keep her positive, she becomes very agitated and asks me to leave her alone.

The road does get harder and I'm sure it will become harder still. Great Spirit thank you for continuing to help me through it.

THE DETERIORATION

It is now 28th October. My friend at last conceded and let the district nurse and case supervisor visit last Monday 22nd October. They recommended a change in medication, to an opiate based drug but my friend refused. 

So a compromise was made and she is now on a long acting stronger version of Tramadol, (the medication she was already on) which is to be taken twice a day, but can be topped up by taking the lower dose Tramadol. This seems to be working some of the time, but my friend still has periods of pain.

The biggest problem we are facing is the rapid deterioration. Up until a few days ago my friend could still manage to get herself to the toilet unaided, even during the night and could still manage to have a shower or bath under supervision. 

This has now changed, I have to take my friend to the toilet day and night and help her to wipe herself. I am washing her and she is spending most of her time in bed. She is eating very little even with taking tablets to improve her appetite. 

I know things are going to be increasingly difficult from now on and I still hope there is an end in sight. Great Spirit help me through each day.


The Stages of Mesothelioma

THE PAIN CONTINUES

Nothing has much changed since my last post and it is now 15th October. My friend continues to be in pain. Some days she manages to get up for a while others, apart from a shower or bath are spent in bed.

We never did get in touch with the MacMillan specialist nurse as my friend is so frightened of being hospitalised that she would rather put up with the pain.

I have tried reasoning, with a view to the fact that the hospital may be able to provide her with better pain management, but she will have none of it.

It is very difficult to sit by and watch when all I want to do is get her some help. I am a Spiritual Healer and Reiki Practitioner, but even this is of no use as my friend does not believe in it. Because of this I am unable to give her a hands on healing. I do send her distant healing daily, but I think she blocks it. Some people do this and she is one of them.

So our lives go on. I am getting increasingly tired and feel very guilty as I just want it all to end, which is effectively  wishing my friend dead, which is awful. GREAT SPIRIT FORGIVE ME.

INCREASED PAIN

Since the meeting with the Oncologist my friend has been in increasing amounts of pain. We are unsure as to the exact cause as the pain seems to be in her bones, back, ribs and arms, but not her legs as yet.

The pain makes movement difficult and apart from getting up to wash, my friend has spent today 30th September in bed. The pain killers she has been prescribed don't seem to have much effect and basically she is extremely miserable.

Tomorrow I think we will be in touch with the Macmillan specialist nurse to see if we can do anything, otherwise this next stage is going to be a long and difficult time.

THE APPOINTMENT WITH THE ONCOLOGIST

The meeting with the Oncologist went well. The chemotherapy has shrunk the tumour, which in itself is great news,  but the consultant did point out that this didn't mean that my friend was getting better, just that it had given her a little more time.

It was decided that the chemotherapy should be stopped for 6 weeks to see if my friend's general health and tiredness would improve. The next appointment is on 7th November, when it will be decided what should happen next.

In the meantime my friend is not in good health. She is now suffering from pain in her back in the ribcage area. The consultant checked the CT scan again to see whether he could find a cause for this but could find nothing. It has been put down to a pulled muscle but I am not convinced.

So all we can do is continue as we are taking each day as it comes, going out when we can and staying in when my friend feels to ill.

THE CT SCAN

The 19th September has come and gone. I took my friend for her CT scan. We had to arrive an hour earlier than the appointment time of 12.15. This was so that my friend could drink 2 litres of a clear liquid over the period of one hour. The liquid smelt like aniseed but tasted vile.  

About ten minutes before she had to go in for the scan she was fitted with a cannula so that a dye could be injected. After waiting an hour longer than expected so it was now 1.15pm the scan itself took place. The scan takes about 15 minutes after a 2 hour wait.

Now all we have to do is wait for the results when we see the Oncologist on 26th September.

Overall my friend is not too good at all. Still very tired and now suffering pain in the left side of her chest. We think she may have cracked a rib as she has lost so much weight it would be easy to do.

We are still taking each day as it comes, tomorrow is another day. 

OUT OF OUR HANDS

My friend had been poorly all week.  We went for the Chemotherapy session on 7th September but having waited for an hour to be seen, we were told that the HB levels were too low for Chemo. 

After some discussion with the Macmillan specialist nurse it was decided to discontinue the Chemotherapy sessions as there were only 2 more.

My friend has improved over this past week, but is by no means well. Her CT scan has been brought forward to 19th September and she is seeing the Oncologist on 26th September so we will find out more then.

What happens from here is any-ones guess, but we will keep plodding along.

BACK TO THE CHEMOTHERAPY

Well my friend went for her chemotherapy session on Friday 31st August. The results of her blood test this week were positive in that all the levels had gone back up, so for now at least there is  no need for a blood transfusion.

Unfortunately my friend hasn't felt so good since Friday, which is such a shame as she was doing so well. One of her biggest problems is having to keep opening her bowels. Although having avoided the curse of diarrhoea, the frequency of bowel movement is quite something, even in the early hours of the morning, she is woken with the need for the loo.

My friend has decided that at the end of this 3 week period of chemotherapy, she is going to wait until after the scan and seeing the Oncologist, before deciding whether to continue with the Chemotherapy, assuming she is  given the option. 

She is tired of the discomfort, the travelling, having needles poked into her and the concern that soon they will be unable to find a suitable vein. Each week it becomes increasingly difficult to find a suitable vein for the needle.

Still tomorrow is another day and everything could change.

A WEEK OFF

We saw the specialist nurse, but she didn't weigh my friend so we don't know whether she has put on any weight and she is too concerned to try the scales at home. There was one concern as she may have to have a blood transfusion due to her blood count being low, but we are waiting until the next blood test 30th August in the hope that this won't be necessary.

My friend was put back on the steroids that help her to eat, because as soon as she stopped taking them her appetite started to fade. Now she is back eating fairly well, but not such large portions.

This week 24th August she has had a week off from chemotherapy, much to her delight, but unfortunately she is back next week and then another two weeks of chemotherapy before  a C.T. scan. The scan will show whether the chemo has had any effect. If it has then the chemo will probably continue. If there hasn't been a change or the cancer has got worse then my friend has said that she will not continue.

Today 26th August, my friend has felt quite good and managed to do more than she has for some time. Only little things, but things non the less.

Looking back over the past few months we are in a better place now than we were, but we still take each day as it comes as tomorrow could be very different.

A LITTLE MORE IMPROVEMENT

Another two weeks down the line and another two chemotherapy sessions behind us. Since seeing the specialist nurse two weeks ago my friend has improved still further on the eating front.

Now fancying all sorts of things,(some of which in the past she has hated and wouldn't even try), she is now eating close to normal size portions of food and has been  for about 10 days. 

Unfortunately there doesn't seem to be much improvement in her weight and she still looks painfully thin, however she is seeing the specialist nurse again next Friday 17th August and she will be weighed again, so we will see.

Still gets very tired and even with food still can not do very much. What little she does manage quickly exhausts her and she has to sit down. She is in bed by 6 pm and doesn't normally get up until 10am the following day.

Still we mustn't grumble, we are better off now than we were a month ago!

AT LAST A LITTLE IMPROVEMENT

The chemotherapy session took place on Friday 27th July. We had to wait for ages before the treatment began because earlier in the day the computers had crashed and put everything behind as blood results etc. couldn't be accessed.

Now normally my friend feels terrible for the first few days, but not this week. What's more she is beginning to fancy food. Some of it is a little strange but no matter, she is eating more than she has eaten for weeks. Still not normal size portions but it is normal food. 

So far she has fancied fish finger sandwiches, pate on oatmeal biscuits, poached egg on toast, chicken and roast potatoes, ham, new potatoes and beetroot. We are only talking about a portion that fits onto a tea plate, but it is better than a mouse or a cup of noodle soup.

Also yesterday 30th July, we managed a trip to the supermarket. I pushed her in her wheelchair and she took control of the basket. A triumph.

Today 31st July my friend is having a bit of a setback as she has a lot of pain, but hopefully this will pass now she has taken some medication.

It's not over yet, we will keep fighting all the way.

20TH JULY CHEMOTHERAPY CANCELLED

Unfortunately my friend's forth session of chemotherapy didn't take place on 20th July. This was due to a low blood count from the blood sample taken on 19th July. In some ways this turned out to be a good thing as it gave her body a rest and time to adjust.


On 24th July we attended a clinic where my friend was weighed. She had lost another 6.6kg roughly 12lb. No wonder she has been looking so thin. However she was put on some more medication and put back on some medication she had taken before all this happened for 'reflux'. The combination of medication and a break in treatment seems to have improved things a little.


Lets hope the next chemotherapy session takes place.

CHEMOTHERAPY UPDATE

My friend is still going for her weekly chemotherapy. This Friday 20th July will be her forth session. She still feels nauseous, this now continues on and off throughout the week. She remains very weak and is spending even more time in bed now.


I can't see that the Chemotherapy is achieving anything. I just see my friend getting thinner and thinner, eating less and less and becoming weaker and weaker. I can't see how it is or how it will improve her quality of life. But then who am I? I'm not a doctor. I just see my friend getting worse and wonder if she would have been any different or better had she not have agreed to the Chemotherapy.


It was her decision to try the Chemotherapy and it will be her decision to stop it. Whatever she decides and how ever long she has on this earth plain, I will stand by her.

TWO WEEKS INTO CHEMOTHERAPY

My friend is now into her second week of chemotherapy. The side effects haven't been as bad as we probably anticipated. She feels very nauseous for the first couple of days, but has not been physically sick and the other good thing is that she hasn't had the other adverse effect of the runs. If anything she is constipated and has to take some medicine every couple of days to alleviate the problem.


I am now giving the daily 'Clexane' injections for thinning the blood, so that means no more waiting for the district nurse to arrive. We do still have to wait on Thursdays for a nurse to come and take blood ready for the Chemo on Friday, but that isn't too bad.


In general my friend is still not eating very well. The energy drinks and puddings she has been prescribed are horrible and she won't drink or eat them. It is very difficult finding something to stimulate her taste buds as she says that everything she eats or drinks tastes horrible.


The other problem is that she has no energy, which is not surprising. She is also very tired and now spends quite some time in bed.


Still we mustn't crumble. We are still ploughing on and taking each day, if not each moment as it comes. Watch out for my next update.

CHEMOTHERAPY

My friend began her chemotherapy treatment on Friday 29th June. The treatment itself takes about half and hour, but there are certain procedures that need to be carried out before and after the chemotherapy itself so the whole process takes about an hour.


My friend had to take various tablets on the day to stop any sickness and is on a daily injection of 'Clexane' a blood thinning drug, as the chemotherapy treatment can cause blood clots. So what you gain can have a negative side.


At present the injection is carried out by the District nurse, but I am in the throws of learning how to give the injection. I must confess I was a little apprehensive, but carried out my first one today, Sunday 1st July under the supervision of the nurse. Hopefully in a couple of days I will be OK to be left to continue. The drug can be self administered but my friend doesn't feel she can do this herself.


So that's where we are at the moment. For the next 7 weeks my friend will be going once a week for treatment. Then there is a week break and the treatment then re-starts but not as often. Still not sure at the moment how often these treatments will be.


Will keep you updated as things evolve.