Another long day…and I got angry!

Not with the NHS I hasten to add. I really can’t fault the care I receive at UCLH. Ok it was another long day but the surroundings and the kind and considerate staff do all they can to make it as easy and as pleasant as possible.

Yesterday we had a real treat, an amazingly talented artist asked if he could sketch a portrait of us. Simon is collecting a group of portraits for an exhibition and we were only too happy to oblige. We had to sit very still for over an hour but he was lovely to talk to and it helped to pass the time. He will be sending us a signed print, and a good quality photo which I hope to add to this blog, with a link to his site and exhibition, in a few days time.

And now for the angry bit. First of all it takes a lot to make me angry, it is not something I feel very often, but yesterday I was mad! My mini iPad has developed a fault down the
left hand side, making it hard to use some of the keys. Those that know me well, know just how much I rely on my technology, especially as it does help to while away the hours whilst sitting in the hospital. So Colin called the leading store that never knowingly under sells, and is supposedly proud of its customer service. On the second phone call, after speaking to someone who said he could swap it for a samsung, he finally got hold of the warranty department and spoke at some length to a very charming guy. He took all the details from our receipt, could see on his computer screen, when and where we bought it, and that it was well within the two year warranty date. It was bought on December 13th 2012. He clearly stated that we had two options, 1) to have a courier deliver a new iPad and take the other away, or 2) drop in to a store of our convenience and they will exchange it for us there. Colin confirmed that this would be ok to do at the Welwyn store as this would be on our journey home yesterday. The guy on the phone checked they had some in store, confirmed that he had made a record of the conversation, and up to that point we felt very happy with the process.

On arriving at the said store at 7pm, the end of a long day, we were directed towards technical support services and that’s when the fun started. A less than polite customer services lady told us that she would have to send the iPad away to be examined by their technical team before a repair or refund could be established. This could take a couple of weeks. I was rather tearful by this point, and explained my particular situation, and how much I relayed on my iPad. We also said, that we had made this journey after the clear instructions, we had received over the phone. Not once did she show any concern or sympathy, or apologise for any inconvenience, but she did eventually disappear to speak to her manager. On her return she reported she had spoken to the warranty service who had indeed made a note of our phone call. She told us that they had given us the wrong information. The said store has a 28 day refund policy and the man on the phone must have got the date confused thinking we bought it on December 13th 2013, however we later worked out this too would have fallen outside the 28 days! Again no apology was offered, she just told us that this was a one off, but they would exchange it in store, however we would have to return the next day with all the accessories that came with the original iPad. This was followed up with her telling us twice more about their 28 day policy, suggesting we were lucky to get away with it, as if she was doing US a favour and WE were in the wrong. We have never come across such poor customer service and if I hadn’t felt so tired I would have gone straight upstairs to their complaints compartment and ask to speak to the general manager. Something I will be doing over the phone whilst Colin rushes down the motorway yet again, before our appointment with the psychologist at midday.

Rant over but I still feel pretty mad and disappointed by the whole experience. I suppose it’s only a small thing in the scheme of things, but anything that makes our lives even slightly easier makes a big difference at the moment.

Take care dear readers

Deborah x

A year on…

…almost to the day, here I am back in the red ‘Big Brother’ chair.

Jan 2013

Jan 2013

Jan 2014

Jan 2014

Maybe not looking quite so much like a grumpy teenager but more like a wiser old lady who knows what’s coming.

I can’t say that yesterday was one of my best days. We left the house extra early and arrived at the hospital by 7.30am so I was first in the queue to get my blood tests. It was then a wait until 11.30 for my appointment with the consultant. The bonus was that Colin was able to get on with some work during this time, as he wisely brought along his lap top.

The doctor was his usual professional and empathic self who, along with my lovely new research nurse Diane, carefully explained the procedures and reassured me, once again, that it was very unlikely that I would have a cardiac arrest during the administrating of the new drug.

The results from my recent MRI scan were clearly explained and it became clear why I was having such excruciating back pain. Apparently the myeloma is growing around the base of my spine, close to the spinal cord. It’s because of this, that during my physical examination the doctor casually told me he would have to put his finger up my backside! (Sorry for the detailed information, I hope this hasn’t put you off your breakfast). As tears rolled down my eyes, I thought could this really be happening to me and wondered how much worse it could get. Still on reflection it was only a short process to check for any nerve damage and I was able to grip his finger quite tightly so all was well there.
I asked for his reassurance that I wasn’t going to become paralysed and that I had a good chance of living many years yet and he smiled kindly, in a fingers crossed sort of way, and said we have a long way to go yet.

It was then a trip to the chief pharmacist, who printed out a complicated list of drugs and procedures. Some days I will be taking 46 in all, so I need to be on the ball. I have found a new phone app that plays a lovely little tune when the next dose is due.

This was followed up by a long wait on level 2, my Parallel Universe. It was comforting to see Familiar faces who remembered my name and welcomed me back like an old friend. My cannula was inserted by my favourite, and expert at finding a suitable vein, nursing assistant. Then it was another wait for the drugs to be made up to my particular specification. They have to take my height, weight and recent blood counts into consideration, it really is quite a science and once again I am so grateful for the NHS.

Eventually the time came and I was given a 15 min bone strengthener drug (Zometa), some IV steroids and an anti sickness drug, all followed up by 30 mins hydration before the new chemo drug. This required the nurse to stay by my side and watch out for any immediate adverse reactions. It was a great relief when it all went through very smoothly, so after another 30 mins of hydration, the cannula was removed and I was free to go.

Unfortunately we hit the rush hour but we were home safe and sound by 6.45pm.

Once home, it was very important for me to carefully unwrap and organise my drugs, as I knew I had to take the next chemo drug 30 minutes after another stronger anti sickness tablet, and on an empty stomach. Having eaten very little that day and with the tempting smells coming from the slow cooker I was in quite a hurry to get the next process over with.

Last nights medication included, 10 tablets of another (new to me) chemotherapy drug called Cyclophosphamide, 20 Dexamethasone (40mg of steroids) sleeping tablets, drugs to prevent stomach ulcers, others to protect your chest and kidneys and another to warn away viral infections, pain killers in various forms and most importantly a strong anti sickness tablet. This all requires carful monitoring, so Colin double checks everything. I don’t want a repeat of last years overdose!

Finally when we did get down to eat I didn’t feel hungry anymore so I just nibbled on one of the delicious biscuits mum had kindly left behind. This was party due to my fear of possibly being sick despite all the preventative medicine I had taken.

So yesterday was a pretty full on day. Today, however shouldn’t be quite so bad. We don’t need to be in London until midday and if we plan it well we may miss the rush hour in both directions.

Thank you for all your lovely comments via this blog and Facebook, it really did help knowing you were there, by my side.
Scores on the board
PH = 5
MH = 6

Deborah
image

PS. For anyone interested, the BrainBox is being put together in an easy, alternative format and will be available for pre-order very soon. For those of you who need to get invoices in before the end of March, or would like further information please contact us by email, or leave a note in the comment box.

I must admit today…

…I am feeling a little bit apprehensive. We are up early in order to try to leave just after 6am and not get caught up in too much rush hour traffic. Much of our time will be spent hanging around in the hospital, waiting for the blood tests results to come through before they can actually make up my medication. At 10’000 dollars per 28 day course, they have to make sure they get it right. The scary bit is, once it gets inside my body, we then just have to wait and see what happens. I will be carefully monitored so any adverse effects can be quickly addressed.

So today will be a long day, the first of six 28 day cycles of treatment.

It is a challenge to think of one thing to look forward to today, but it would be fair to say, getting back home again in one piece sounds attractive. And the one thing I appreciate today is having my husband by my side.

Please pray for me, or send me all your positive vibes.

Thank you

Deborah x

Scores on the board
Physical health = 5 due to back pain
Mental health = 8 due to anxiety

So here we go again

First of all I must thank all my friends and family for a great weekend. I was thoroughly spoilt with flowers, chocolates, fresh fruit and other lovely gifts.

For the last few days I have been experiencing very painful lower back pain so I have started back on Tramadol. This drug makes me feel rather dopey and my whole body itches which is a common side effect that will hopefully ease off soon.

This week is going to be pretty busy and I must admit I feel a little nervous about the journey ahead. Today I will have my 7th bone biopsy and find out some more about the times and plans for the chemo, which starts on Wednesday. Last night, I made the mistake of reading up more about the new drug. I suppose it is better to be well informed; I now realise why they need to observe me for some time after receiving the IV drug. The trial aims to see how effective and safe it is to take Carfilzomib (Kyprolis) in combination with cyclophosphamide and dexamethasone.

It would appear that my immune system will be compromised so please do not visit if you have any kind of infection.

On Friday I have an appointment with the pain nurse and psychologist. This should help me to cope with some of the physical and emotional side effects.

Wish me luck

Deborah x