And so back to Dorset

 

This weekend has been a very hectic one. It is university time once again and so like many other parents this weekend, it was time to do some serious car packing and drive off to university with everything but a kitchen sink in tow. This time we were a bit more experienced at it, as it's Rose's second year, but this time she is renting a house rather than staying in the university's own accommodation, so we needed to think of packing a few different things than last year. Having just managed to squeeze everything in the car, we set off with some trepidation back to Dorset.

Poole Harbour

Wimborne Minster

I say 'with some trepidation' as a few days beforehand we had been phoned up by the letting agency to say the house owner was in the middle of building an extension and Rose's house wasn't finished, so we were a little worried about what to expect once we got there. 

We managed to get about half way to Dorset, when I suddenly realised in all the whirl that I had forgotten my spare medical pump for my intravenous medication. Now, this I know I cannot manage without, I get serious symptoms should I have to have my medication interrupted for any more than a few minutes now, so it isn't possible to reuse the pump already in use, as it would mean interrupting the flow for too long while it rewinds itself ready to use and to do this for each medication change for the few days we were going to be away is far too risky. So we had to do a u- turn and go back home to get it. Several hours later than planned and cursing myself and my IV drugs we managed to arrive safely in Dorset. 

Kingston Lacy

I haven't ever forgotten my pump before, but there is so much to organise and remember when you are travelling and you need to take a serious amount of medication with you, and it can be even more difficult if you aren't feeling too good, which I hadn't been that morning. In fact I haven't really been at my best for the last week or two and I had been considering whether or not I should even be going, but I felt determined I would whatever. Since I've been ill, doing things and sharing things with my family has become more important than ever and I really wanted to see Rose's new house and be there to help her move in. For me it would be yet another milestone I have managed to achieve, so there was no stopping me really. 

I always say to myself, 'what is the worst that can happen?' Well I could end up in bed for the few days whilst we were away or I could end up in A & E; both have happened to me before while we have been away from home and although unpleasant,  I still managed to live to tell the tale! I had had similar happen last week with feeling very unwell before we went into London to watch Rose's marathon, we ended up risking travelling in with me not feeling very well six or seven hours later than planned and I had to tell my girls to travel in without me and we followed later. The weekend turned out well in the end and we had a great time, so inspired by this I felt I really wanted to try and get down to Bournemouth. Sometimes it would be easy just not to bother, but the rewards when you do try and then it all works out are so much higher, you appreciate every little minute you experience and if it doesn't work out, then it doesn't work out and you just have to try again the next time.

Once in Bournemouth we managed to get Rose all moved in and settled. The building works aren't really affecting them too much and the house is spacious, in excellent order and at the moment very clean. Rose is sharing with a few boys as well as one of her best friends and they all helped bring her stuff in, which was good for Rob after his extra long journey. We spent a very wet Sunday shopping in the Range with a big trolley load of bits and pieces she needed and then went back to her house and completed all those finishing touches. Her room looked cosy and just how she had planned it. Her room mates are a great crowd this year and we left one very happy girl, who after having a difficult year last year, was thrilled to be in such lovely digs and with lovely people. 

We enjoyed a days rest on Monday, where we drove around Poole Harbour, visited Wimborne Minster, a lovely market town  and Kingston Lacy, a National Trust house and garden. A few more places on my 'Dorset' list have now been ticked off. We hadn't had room in the car for the wheelchair this time, but luckily being a disabled friendly National Trust place, we were able to borrow a wheelchair at Kingston Lacy so I got to see a lot more of it than I might have, which was great. And there are some bonuses to rising at 6am to make up medication, we were rewarded every day with a gorgeous sunrise over Sandbanks, where we were staying for the weekend. I will add we were just in a small self catering apartment not one of the luxury mansions you see on the television! 

Sunset over Sandbanks

All in all, it all turned out to be another good trip, we popped in to say our goodbyes to Rose and left her as happy as Larry and I left Dorset one very happy mum having achieved another milestone in our family life and knowing she was so happy and settled. Of course I am never going to hear the end of the 'forgetting of my pump incident', but I will just have to live with that one!

All Things Medical

We had a hectic weekend taking Rose and her friend Emma and one very loaded up car back to Bournemouth after their reading week at home. It was great to have Rose back and spend lots of time with her.

Lymington Marina

Always eager to explore a new place or two, on the way back we decided to travel through the New Forest. It was perishing cold all weekend, but we drove along the coast and managed to visit Lymington, which is a picturesque and busy sailing town and ferry port. It has a pretty cobbled street, which leads to the marina and a busy high street with Victorian and Georgian buildings some interesting shops, market and cafes. The good thing about visiting at this time of year is that parking is easy and everything is quieter, so everything feels much more manageable than it is when you have to push your way through crowds and hoards of holiday makers.

Coastal drive

Lyndhurst

We then drove through the New Forest, a scenic drive where there is lots of heathland, woodland and wild ponies and visited Lyndhurst, which is known as the capital of the New Forest being a travelling route between the South Coast and Southampton. This is also an historical market town with a narrow high street, Victorian and Edwardian architecture and plenty of shops and cafes. It also has an interesting museum and a church dating from 1860, which are both worth a look.  

Lymington

Exploring new places always helps to keep us busy and take our minds of transplant and the endless waiting. I bought a guide to the New Forest and East Dorset as we will be coming and going to and from this area quite a lot over the next year or two while Rose is at university and I intend to do a lot of exploring and sightseeing!

www.thenewforest.co.uk/

Walled garden, Chewton Glen  

After that busy weekend, it was back to all things medical - there is never much escape, it's like managing a full time job-  it all started with a visit to the warfarin clinic on Tuesday. This time I had hoped to be stable like I have been for the last few weeks and was hoping to get a months reprieve from the clinic, but no such luck, my INR blood test was a little on the high side this week, so I have to go back in two weeks time.

On Wednesday Papworth phoned and gave me a date in March for going back in hospital, I seem to be on the phone to them every few days at the moment with one thing or another and between the the two teams.

I also had to spend a bit of time chasing up the Lister Hospital about the scan I need for my ear, so far they have ignored and failed to respond to the two letters Papworth Hospital have sent them and my first phone call chasing them up. In the end I found out they were simply just ignoring them until I had had my next appointment with the consultant. Now I had specifically been told to cancel this, as I couldn't get my scan in time for it and had rearranged it for April so they could manage to sort the scan out before I went back. So you can imagine my frustration. They have now agreed to do a CT scan instead, which I'm very relieved and pleased about and they have promised it will be done before I am admitted back into Papworth in March. So fingers crossed that that will be sorted out very soon.

Wednesday was also the day I decided that once and for all I need to try and sort out the mess that eczema is causing all over my arms, legs, hands, ears and back, there is not much of me left that is normal nowadays! After talking at length with my PH consultant last week, it was decided that the Epoprostenol is not the cause, but the flushing it causes is really exacerbating it and the diuretics I need are adding to the problem of drying my skin. My many allergies to one thing or another are probably what triggered it, but the drugs I have to have are preventing me getting rid of it so easily and now it is becoming unbearably itchy and sore. So I've another appointment at the doctors to make and in the meantime I'm going to have to spend time religiously creaming my arms, legs and back every day at least three times a day, to try and help things and keep it at bay, just adding to the long list of medical requirements and routines of each day. I don't think I will be able to do much about this problem, as I cannot come off any of these drugs until I get my transplant, so I hope I can just keep it at bay.  

The spare yellow sharp bins make good storage boxes!

Typical months delivery

Thursday saw what we now call 'the drug run' in our house, when I have a months supply of drugs and equipment delivered to make up and maintain my intravenous drug Epoprostrenol. Obviously someone needs to be in the house when it is delivered and there are always quite a few box loads of the stuff and we have had to find storage space for it all. It always takes a while to make a list up of what I actually need for the month, which I have to tell BUPA the week before, in fact my very organised husband does a spreadsheet there is so much stuff! I always get a phone call from a dedicated person at BUPA to ask what I will need for the coming month a week before delivery. Then it arrives in box loads and all needs unpacking, checking carefully that all is correct and then sorting and storing.   

Each month I also have several different tablets to help my condition too, I usually have to take 12 tablets or so a day so I'm positively rattling around, as well as having an intravenous drug whirring round all my blood vessels. The medication includes blood thinners, various diuretics, anti sickness and diarrhoea drugs and these I get on repeat prescription from the doctor and local pharmacist and I have a yearly prescription card, which means I just have to pay £100 a year or so for them, rather than the £50 plus it would cost each month if I paid for them monthly. Friday was time to collect my monthly prescription drugs, where I am almost on first name terms with the pharmacist and staff in the shop. They will get a shock in there one day when I walk in with a new prescription for a whole new set of drugs when I get my transplant.

I suppose you could call me a firm, well seasoned and hardened drug addict now!

We were recently in the local Stevenage Comet newspaper and I couldn't get an online link to our piece so here's a piccy.

We also managed to be in the Welwyn Hatfield Times again this week, as they did a follow up article about the record number of people who had signed up to become organ donors since the ITV 'From the Heart' week. It was great to just keep the story going and hopefully may prompt a few more people to sign up to be organ donors.

http://www.whtimes.co.uk/news/knebworth_mum_s_delight_as_nearly_150_000_join_transplant_register_1_1953440

We also got a lovely card from NHSBT, thanking us for playing a part in their campaign that week, which was a really nice touch.

It is now 528 days that I have been waiting for my transplant, the last 28 days have been hectic, but during that last month of February 84 people will have died while waiting for their transplant and while I have been waiting 1584 will have lost their lives. So if you haven't already, please use the link below and sign up.

If you want to sign up to the organ donor register click on: www.nhsbt.nhs.uk/

You can help us get the Government looking at organ donation by signing the epetition: http://epetitions.direct.gov.uk/petitions/38220