Health update – more frustrations!
On Sunday I had my CT scan in Exeter as arranged. When I had my first scan there, back in the summer of 2019, Mr. Daniels, the consultant, had said that he wanted me lying on my stomach for it, and when I arrived, there was nothing on the instructions to that effect, and I had to stand my ground and insist that this is what he had said, and eventually the woman phoned for instructions, and I was told to lie on my stomach and it was done as he wanted. This time, bearing in mind what had happened before, I thought it wise to find out in advance which way up he wanted me, so when I made the appointment with the Medical Imaging department, I asked about it, and they said they had no access to the computer records on that score, and they had no specific instructions beyond that it was a scan of my abdomen and pelvis. They suggested I phoned the consltant to find out. I duly phoned Mr. Daniels’ secretary, and she said to phone the Medical Imaging department, which I said I had done and they had send me to her. Pillar to post, pillar to post… She said she had no access to my computer records or my notes, and would ask him and get back to me. She did so, and said that this time, he wanted me on my side.
I duly arrived for the scan, and – you’ve guessed it – no specific instructions about my position! As it was after 6 p.m. on a Sunday evening and the consultants and their secretaries would have been at home, there was nobody to phone. They said they had no access to the computer records or my notes either. Since there was nobody to contact in order to confirm what I had said, they had no authority to scan me on my side just on my say-so, and I had to agree to have it in the usual position, on my back. I told them that I hoped that this did not mean I would have to make another trip all the way from Torquay in order to have it done correctly.
Normally I have bloods taken, or cannulae inserted, into the vein in my right elbow, as it is nice and prominent and usually doesn’t pose any problems. However, on this occasion she made two attempts to insert the needle there, which caused me a great deal of pain, and with no success. She then proceeded to insert it just above my wrist, and the pain was so bad that it literally reduced me to tears.
The whole experience was therefore not a pleasant one, and I just hope it doesn’t have to be repeated.
So much for their new “state of the art” computer system – that nobody seems to be able to access. There is NO communication between the different departments. I am really fed up with RD&E and their inefficiency. My hubby said I should make a list of all the things they have got wrong since I was first referred three years ago. It seems that every encounter I have with them, they get something wrong.
I received a copy of the letter sent by Mr. Daniels to the GP after my recent appointment with him, in which he stated that he proposed performing a parastomal hernia repair with mesh. This is NOT what he said he proposed doing when I saw him back in 2020, several months after my last CT scan (because they lost me in their system), when he said that because I had lost weight, there was excess skin on my abdomen, making the area floppy and unstable. What he intending doing was a tummy tuck to tighten everything up and give a nice firm base for the stoma. This is certainly what I want to happen; if he is only going to do a basic repair with mesh, there is little point in my being referred to Exeter at all, because Mr. Pullan at Torbay had already done this repair in 2018, which failed due to a major post-operative infection, and he said that there was a limit to how many times this could be done as each time it weakened the area further. This is another item to add to the list of questions which I hope I shall have the opportunity to put to Mr. Daniels before he does the operation. I really want a face-to-face appointment with him before he goes ahead.
I am waiting for the pre-assessment appointment which I have told will be by phone, as I had bloods taken and an ECG done when I saw Mr. Daniels. He said this would save me having to make too many trips to Exeter. However, I hope I shall be able to arrange a face-to-face appointment for this as well, as I have several points that need to be addressed. I have a copy letter from the anaesthetist to the GP, after the pre-assessment before my operation in 2018, and that letter sets out all the special requirements that I have, which need to be put in place for my post-op stay in hospital. Since that time, nothing has changed, so I want to be sure that they are all in place this time as well. One of these involves the problems I have every time I am in hospital with cannulae tissuing over after being in situ for a short while, rendering them useless. This is the result of damage to my veins caused by my chemotherapy in 2015. What they have done in the past is to insert a PICC line through which they can take bloods and administer medication. I am aware that this is a more risky procedure than the insertion of a cannula, and it does cause more work on the ward because it requires special qualifications to deal with it, and the setting up of a sterile field, but for me in the long run, this is far preferable to the constant renewing of cannulae and trying to find suitable sites, which involves me in a great deal of pain and stress.
I also require an airflow mattress, and possibly foot pumps to help prevent DVTs, and it has to be made clear to the nursing staff on the ward that it is not easy for me to sit out of bed for the normal required time each day because of the fatigue caused by my ME.
If the anaesthetist conducting my upcoming pre-assessment has access to this letter, written by one professional to another, rather than just taking my word for it, I think this will prove a more successful method of ensuring that I get the post-operative care that I require. I really do not want to have to go through the whole thing yet again, and have to make my case again for these extra requirements – it feels as if I am fighting a battle each time, and I know from experience how it has been in the past, and how these additional considerations really help me.
Of course, knowing RD&E’s appalling record for non-communication between departments, it is likely that anything the anaesthetist says may not get passed on to where it needs to go.
I said to my hubby on Sunday night that I think we’ve been really spoilt with Torbay Hospital. You hear horror stories constantly of things going wrong in NHS hospitals, but Torbay have been consistently brilliant throughout my entire experience with them, through a heart attack, two separate cancers, and several major operations, chemo and radiotherapy. They were also absolutely first class in the end-of-life care they provided for my dad, and in caring for my mum on her various stays in hospital towards the end of her life. Torbay Hospital is exceptional and it is not surprising that they have been winner of the Hospital of the Year award, and I believe we really fell on our feet, moving into their catchment area back in 2013, and living only 10-15 minutes away.
RD&E does not achieve this high standard, in my opinion. Every encounter I have had with them seems to have involved some kind of problem with them getting things wrong. I am seriously concerned that when the time comes, I may not get my tummy tuck/parastomal hernia repair at all, but they may cut off my leg instead.
Kitties
Here are the most recent photos of our little ladies.
Ruby being comfortable on my neck pillow.
Ruby using Lily as a pillow. Lily is so incredibly soft, that I don’t blame her!
Last week, I noticed that the cord to raise and lower my overhead airer in the utility room was becoming badly frayed, so my hubby bought a new washing line in order to replace it. It is one of those old-fashioned airers with wooden slats fitted into cast iron ends, which is raised and lowered with pulleys. After my first abdominal surgery when I was not allowed to lift anything or put any strain on my tummy muscles, my hubby and a neighbour got together to rig up an electric motor to raise and lower the airer, which has a control panel on a cable, as on a recliner chair. It works a treat. However, the cord has to pass through a metal ring screwed to the wall, and this causes friction every time the airer is used, so there is wear and tear and the cord needs to be replaced periodically.
This time my hubby used the old cord as a template for the new one so that he could arrange the knots etc. in exactly the same places, so that when he assembled it again, the airer would work as before, and would remain level. He brought the cords into the sitting room and settled down to work on it……
…..with help from two little assistants who were only too delighted to get involved!
Spring – my favourite time of year!
I love the early spring. We had to drive over to Ivybridge for the dentist this afternoon, and I noticed that gorgeous pale green bloom on all the bare trees, as their little buds are starting to ripen, ready to open with this year’s new leaves.
The first snowdrops I have seen:
and there are catkins everywhere on the hazel trees.
I saw a little bed of purple and yellow crocuses as we drove along, but was unable to photograph them. They are also favourite harbingers of spring, as are the pussy willows, which I adore.
It will not be long before the rest of our daffodils are out in the garden – lots of nice fat buds coming – and a bit later, our primrose bank will bloom in all its glory.
Absolutely my favourite time of the year.
