MY EXPERIENCE OF THE VAMPIRE DARTS TEAM

Well what a week! I had the chemotherapy at the second attempt but it was still fun! Of course my veins don't ever want to co-operate. 4 attempts later and they did get some blood to test and I was left with 4 bruises on my left arm, one of which appears to travel down a vein leaving a nice elongated mark. Of course there was the essential urine test. The first being from the bag was too contaminated so this had to be taken from before the bag, as directly from the catheter as possible. A nurse was told to use a syringe on the valve, but I didn't realise it would leave a small hole in the valve. It wasn't until I stood up later that I noticed the damp patch [damp? It was more wet!], and, as is my want, I changed into my baggy, thin cotton trousers as soon as I returned home and so ended the day very soggily as well as bruised.
Fitting the cannula was awkward, and these were nurses who only did that all day, all week. A very tall surgical registrar wandered into the ward at that point and was instantly persuaded by the nursing staff to do the job, much blood everywhere later the cannula was fitted and taped into place.
The royal blue coloured infusion began. It probably took about two hours to drip into my vein [my watch needs a battery] then it was replaced by a bag of steroid solution so about 5 hours after I had first set out I was home and very tired. There were some people who had brought their partners but the said partners just sat patiently and read their newspaper. I couldn't help wondering just why they were there.
When I was finished infusing an appointment was made for 1 month later. Apparently the course consists of once a month for three months and then every three months until next April.
Luckily because the chemotherapy is only a weak solution the only side-effect, apart from the bruises, is bright green urine that fascinated me! I don't think people who haven't got a collection bag get the full effect of this colour change. They don't know what they are missing!
Unfortunately, my bladder spasm medication stopped working at the same time, I thought it just needed time to settle down but no, it got worse. The doctor has changed my medication and I hope it works because the local pharmacy that I use has changed their policy so do not deliver prescriptions unless requested by the doctor, [which it was] yet it still took 2 days to reach me!
So it is all quiet on the medical front at the moment until I go to see the vampire darts team in mid June. I am still falling to my right and waiting for the equipment and adaptations team to do the assessment with regard to the wheelchair etc, They gave me a date of July so I will have to see and miss all the decent weather,

BITS OF ME LOST IN TRANSIT

So I was having my low-dose chemotherapy this week was I? Anyone want to take bets on that happening? Of course I didn't! You all know by now that nothing in my life runs smoothly.
I set the alarm for 5 a.m to give myself plenty of time to get ready for the medicar/ambulance at 8 a.m. I even managed to put some make-up on even though I did make a few mistakes with the eye-liner but that has taught me to try applying the eye make-up first not last, doing it that way will make it easier to mop up my errors. I wasn't waiting too long for the medicar/ambulance either. 9 a.m saw me on the way with fully charged IPod and Nintendo, oh, and of course, the ever present family history magazine.
The ward I was taken to was a bay that had no beds but was full of armchairs with a nurses desk, there were three recliners that had already been taken and two 'old women' type in other words upright with wings. I was the only newbie so was placed in the seat nearest the desk and subsequently discovered that the upright chair did not stop me falling to the side.
Then began the pincushion time, I was asked which arm I wanted the blood taken from and after a discussion it was decided to use the left arm for the extraction of blood and the useless right one for the chemical infusion, plus the easy one, a urine test. The blood was sent to the lab, but nothing could be done until the results were returned. A while later, after two free coffees I learnt the infusion had to begin before noon and the lab had lost my blood plus results, a quite common occurrence apparently, so it was decided to take some more blood, this time from the back of my left hand and label this as urgent.
A doctor then appeared, asked me how I felt and did a check up, I told him that I had felt dizzy all weekend etc. and had dry cough, on this basis he decided that I most probably had an infection and so put the treatment back a week. I was told to come back next week and drink plenty of fluids between time. I knew the cough was because of de-hydration but he was the doc, well he had a security tag that said so.
This means two appointments at two hospitals in two days next week, although I haven't yet received a letter with the revised attendance date so I do hope transport has been arranged, I will ring them on the Monday if still no letter arrives.
The Wednesday appointment, at the other local hospital is for the bone density scan which probably will be affected by the chemotherapy especially being the following day, yet more problems and delays.
Why am I fretting about the whole situation when I know that all the chemotherapy can do is stop me getting worse? Even at this level of disability I know that I need a wheelchair and stair lift etc., and all I can do is to wait.
And there, friends, I will leave you. Join me again after the second attempt.

FLOPPY ISNT ALWAYS A RABBIT

The Occupational Therapist came again. I can't remember if I mentioned last time, but I don't like her. She has no empathy and therefore thinks everyone has her beliefs and her finances. Maybe I didn't make myself clear enough last time but she brought me different sized handles to try for using cutlery, it isn't everyday cutlery that is a problem, the problem is turning my right wrist towards my mouth. She also told me about 6 times if I buy the size of handle she thought most appropriate not to put them in the dishwasher! If I could afford 1 where would I put it? The OT presumed I had got a dishwasher and when I said I hadn't got one, she just said a deflated oh. Another case of non-empathy I thought to myself, but she has arranged for a physio to see me so they can sort out the wheelchair, let's hope the physio listens more to me and what I am saying, not how what I am saying relates to their circumstances
Even though there were personal differences, the OT did focus my mind, the last visit made me realise that the present level of disability was permanent and this visit made me look at what I need. So a fold down table for me to eat my meals from instead of a tray on my knee and use the lap top on has been ordered and should be here this week, also we have bought a tumble drier [thank you Irish Lottery] because I can't get outside, the only problem being space so we have had to put it in the porch.

I have received a date at the beginning of next week to have the low dosage chemotherapy. The only downside is that I now realise it will not not make me feel better just hopefully prevent me getting worse. I then have to have a bone density scan in a few weeks but hopefully that doesn't involve needles of any sort.

The district nurse has been twice this week to change my catheter but the chemist has not sent the new catheter and associated items. That is not surprising since the local pharmacy has changed hands from a small private concern to a large chain. The chain has supermarkets which seem to only sell brand names and if you mention an item or special offer that has been advertised the answer is always 'this branch doesn't stock that item'.

So getting a prescription delivered is a pipe dream. I complained last week about non-delivery of medication and the necessity of certain medicines when I was told I should order the repeat prescription by phone, not online. Why have an online service? I have sent an email to the people who maintain the site, so I will see what their response is. There is the choice of GP surgery or chemist so all the site needs is another choice of delivery putting on the site. We shall see!

Anyway back to the nurse, she may come again today with all the bits and pieces, if the chemist still won't play she will try again tomorrow.

As to the future, when my mother does go into the care home, we will have all her furniture to dispose of. One item of which is an electric rise and recline chair, and, as I have difficulty sitting upright, it might be useful to have it re-covered in a different colour so it matches my living room, which is NOT BROWN. We have had no indication of when the move might be.

The nurse eventually was able to collect the things she needed a week later then she originally intended and so was able to make the change albeit a week late!

I am really fed up of gradually falling to my right hand side when I'm sat and it takes a lot of tiring effort to stay upright even though I now have the table I mentioned before.

Tomorrow I go for the chemotherapy, apparently I will be there about 5 hours, but why do people [my daughter and Alan] think someone should be with me? I am taking my Ipod that I am charging up now and my nintendo which will be charged up as soon as I find the charger!

So more on the hospital day and being a pincushion on the next update.

FOOD FOR THOUGHT

The MS Occupational Therapist came out to see me last week and the only positive sounding thing was amazement at me not having a wheelchair. An option that I have now come to see as my life-saver. The only problem is of what sort, I cannot wheel myself due to lack of strength, and my carer isn't allowed to push because he has just had a heart attack. I know that I can have one on long term loan from the Health Authority [a wheelchair not a carer] but do they only supply the sort I can't use? What would be ideal is a powerchair, even though they do look like a Robot without the tracks, the seat turns 180 degrees so no more 3 [30] point turns and with a joystick control, I would not not have to grip the handlebars and hold in a lever to move. I know what I want but I would also like to know how to afford one. They range from 3 to 6 thousand pounds.

My main concern is the concrete steps and me somehow being able to get outside! The OT is putting the wheels in motion for me to have a stair lift but that is inside, the Housing Authority may think that it isn't viable to install a ramp system and recommend I move to a level access accommodation, either a 1 bedroom flat or a 1 bed bungalow. Moving in itself wouldn't be objectionable to me because there is no community spirit in this neighbourhood but its the thought of leaving behind the garden; and the décor inside the house which I have spent at lot of money on bringing it up to a decent standard. This house had been totally neglected for about 50 years prior to me moving in, all the hard work and costs involved I would be reluctant to walk away from. [OK ride away from]

I'm sure the OT was trying to help when she started pointing out features on the laptop that she had decided would be useful to me. I was very restrained and didn't ask her if she often told her granny how to suck eggs. I keep smiling to myself about the restraint I used.

Anyway the OT is calling again next week so I shall see what is happening. She asked me to consider moving, and I have considered it but need more information, and to be told of all my options, to come to a decision.

I have, however, realised that all the things I have read and been told all amount to the same thing, I will not improve, treatment stops me getting worse, but there is no cure only treatment to make it stand still. Why had it taken me so long to put all the pieces of information together? Probably because despite the consultant showing me a brain he insists is mine on MRI scans, in reality mine has long since left the planet, as anyone who has known me a while will agree.

This is only a short piece because I feel so weak and tired at the moment.

So see you all later.