Sept 9th 2011
The operation went well yesterday I think. An excellent surgeon Mr. Baker, performed a Splanchnicectomy. From there on things went downhill. They discharged Julia at about 1.30pm and her sister and husband brought her home. As she came in you could see she was unwell and I put her straight to bed. Neither her sister nor John her brother in law were happy at the discharge and neither was I when I learned she had been sick throughout the night and morning and had no bowel control. This was soon proved at home too and Julia was in real distress.
By 6.oopm we had got an ambulance and rushed her to the A& E dept of our own Local hospital where they did everything they could to make her comfortable, find out what was wrong and get her a bed. The latter didn’t happen until 11.00pm when she was admitted to the Acute Medical Ward. Some three days later there has been much illness, no eating or drinking and Julia has been on continuous drips until we find out she’s got gastro enteritis.
I’m VERY unhappy that someone on chemotherapy wasn’t isolated after the op to prevent being open to infection and VERY unhappy that an uncaring staff could discharge someone so obviously ill.
Sept 12th 2011
Julia seemed to have turned a little corner today and was a bit brighter. I’m relieved but this will not end here.
I heard from Julia that on the morning of the 9th she was brought some cereal. She wasn’t able to eat any and found that she wasn’t able to swallow the milk. It seems some members of staff found that quite funny. So they ridiculed someone who was sick and suffering and who was becoming dehydrated.The dehydration was very bad by the time we reached the local hospital that evening and there were multiple drips used to help her overcome this until today (Monday).
Sept 13th 2011
Whatever corner we turned yesterday led back to where we were before. Julia is skin and bones at the moment , she’s lost so much weight that she could ill afford to lose. The strain of the sickness and diarrhoea has left her in pain, weak and feeling so defeated that she is saying ” Enough. I give in.” Still unable to eat and drink her mood has become very low and it’s very hard to jolly her out of it or talk her out of it seriously. If only this was over I feel sure she’d be able to get back to the chemotherapy with a degree of acceptance and a determination to win. The nurses on duty on THAT ward on THAT day have no idea what they’ve done. I’m told today there was another cancer patient there also and when one member of staff arrived coughing and sneezing Julia mentioned quietly that she was meant to avoid infections the other woman agreed saying they were at risk because of the chemo. The ‘Nurse’s’ response was to snap and say ” What do you want me to do, go home? Who’d look after you then?” Which is not the attitude I expect from nurses as I don’t expect laughter when a patient complains of being unable to swallow. If a Nurse is so jaded with her job that this is her only reaction then she shouldn’t be in that job any longer. If more than one on duty feels that way then I would expect the health authority to replace them after reprimanding them. The staff on duty the day before were so different from that. I’m determined that this will not be dropped. I have written my complaint and expect the staff on duty that day to be reprimanded and I want an explanation of Julia’s early and cruel discharge that’s made her and all members of the family suffer like this. I suggest anyone who has suffered anything like this at all should not only complain and seek redress of some kind but make sure the local press hear of it as mine will soon.
Sept 19th 2011
Julia is finally home. She’s very weak and her muscle tone has all but gone as she had no spare fat to cope with the ravages of this illness. Now it’s time to start building her up again so we can get back to fighting the cancer. She’s missed two chemotherapy sessions so far and will no doubt miss next weeks too. That scares me as I have no idea if the tumour might have started growing again without the chemotherapy to stop it. We’re in unknown territory now.
Sept 23rd 2011
For the first time since the operation Julia has got dressed. She’s eaten some breakfast and also some of a late lunch. It’s real progress though I realise there’s a long way to go. Next week we see the oncologist and I’m hoping he’ll restart the chemo the following week. We have to build her up to fight and get her exercising. Though I’m grateful to the surgeon for the job he did I’m sorry that the hospital could not exercise more care and send her home well instead of in the state they did. Thank The Lord for the competence of the local hospital.
Sept 26th 2011
Visit from our daughter and her boyfriend yesterday couldn’t enthuse Julia. They came to help rearrange her bedroom and make more space. I’d hoped she would direct operations but it was too much effort for her. But, she did have a private word with Yvonne’s boyfriend Ugo and unusually for her joined him in prayer. This lasted quite a while giving Yvonne and I chance to see how we feel things are going and what to expect.
What a sea change today. Julia woke up when I took her a cup of tea at 8.15 am. She was bright, breezy and much more positive. After washing and dressing without prompting she suggested a walk to the corner shop together. Though her legs were a little wobbly on the return journey it was fantastic that she’s made such an effort. And people were glad to see her which must have helped her confidence. She was happy and smiling all day and stayed out of bed until almost 9.00pm which has been unheard of recently as she’s preferred bed to being in the lounge…despite the fact that I’ve showered this month. I have to hope this lasts as we’re due to see the oncologist on Thursday and I want her back on chemo as soon as possible. The odds are short with pancreatic cancer and I want all the help we can get. I despise the other hospital for causing this delay in treatment and leaving her so weak. I won’t let this drop.
October 11th 2011.
I wrote my letter of complaint in late September and received an acknowledgement of receipt when I complained that they had not done so within the two days they specify for same. I was reminded hat they could take up to 40 days to investigate. As the complaints team are at the same hospital I’m amazed. All they have to do is walk downstairs, verify Julia was on the ward when I say she was and look at her notes which must have recorded her condition? So we are on 11th October now with no further response and I shall wait the prescribed time before writing again. I’m no fan of the compensation culture but this has made me wonder whether something of that ilk isn’t called for to make the hoospital ensure their staff don’t allow anything similar to happen to vulnerable patients in the future. If a charity has to get a nice donation from this so be it.
Anyway, Julia restarted the full course of chemotherapy again yesterday . I was worried for a while as her while cell count was high from bloodtests last Thursday and higher again from bloodtests yesterday, then they mentioned that her steroids could be causing that. She has a great drug too called Creon which is an enzyme, replacing the one the cancer has dislodged, it helps her digest food which means she actually gets hungry again now and can eat. We’ve regained the weight lost since the gastro-enteritis and a little more to boot. Of course I’m bankrupt now as she’s eating every ice cream in the County.
One funny thing yesterday, Julia was going to lie on a bed for the treatment which can take up to 4 hours. The aide who took us started to lower the bed for her to get on. I saw some movement but after a couple of seconds I noticed the lower end wasn’t going down. There was an over-bed table jammed under a metal brace which holds hand disinfectant keeping th bed up, and instead of it going down the legs were coming up. The jammed table was starting to bow a bit so I took a step forward and pulled the table free. The result was the bed slammed to the floor startling everyone in the ward, including the aide who I’d not told to stop using the bed remote , and the table shot free sending the metal struts straight into my shins. I promise I did not swear (out loud). But I wanted to ask if there was another spare bed for a while.
Since the discovery of Julia’s pancreatic cancer life has been a series of ups and downs. The previous ‘up’ was coming through a splanchnicectomy to cut some nerves and rid her of pain. The ‘down’ was the illness she suffered after being discharged the day after the operation by one hospital and being admitted to another as an emergency. We we’re very close to losing her at that time.
The next ‘down’ was the prognosis by the oncologist and though Julia was free of pain she was still in some discomfort and had little appetite. Then through some superb detective work by my daughter the oncologist prescribed what I can only call a miracle drug called Creon. This provided her with the enzymes to digest her food that the cancer had removed. From being bad one day she went to glowing the very next day. Her appetite has increased, she’s put on more weight and she’s slowly bankrupting me with buying ice cream. There is now a huge shortage of ice cream throughout North Wales and it’s all down to her and I love it.
I’m so grateful for all the positive thoughts from friends and strangers alike. When people can work together like this it shows there’s hope for the world after all.
4th November 2011
Finally today I have received a letter from the Chief Exec of the Betsi Cadwaladr University Health Board regarding my complaint over Julia’s treatment.
Julia has received an unreserved apology for the unsatisfactory treatment and the stress and anxiety to us both following her treatment at the WREXHAM MAELOR Hospital in Wrexham. It looks as though attention has been paid to most of the points I raised like a separate room for Cancer patients to recover in if they have reduced immunity due to chemotherapy. But the fact that they feel Julia was well enough to be discharged because no concerns were raised about the diarhhoea and nausea incenses me. That just means that a member of staff didn’t write notes on what was seen to happen. A member of the palliative care team was aware of the nausea and decided to change her medication to off set this, it didn’t work but was at least an attempt and was recognition that she was suffering . As I was aware of her condition and the fact that she was very dehydrated when she arrived home, you would expect the professionals who were monitoring here to notice too.
Julia being a more forgiving soul than me has accepted the apology but I decided that such treatment in my eyes warranted the hospital being named. This was Lister Ward at the Wrexham Maelor Hospital. For the sake of any other patients being admitted with a low immunity from chemotherapy I hope things improve. I have been made aware that the ward sister hs spoken to the members of staff on duty that morning and impressed upon then the need to provide full and proper care and also to give respect to the patient rather than laughter at an inability to swallow. I’m grateful for this.