Already its the 26th of January. Not many days left and it will be February. For me January has mixed emotions. The 24th of the month is my beloved Mother’s birthday. She passed away in the August – the first birthday she wasn’t here for was her 80th. She was so looking forward to turning 80. My Mum loved life to the full and all of us that surrounded her. There is not a day that doesn’t go by that I don’t think about her. We share many conversations about Mum and many a time we talk as if she is in the next room and is going to walk in at any time. I guess I wish this to be true.
I have had Steve for company a few extra days this month. I’ve had a visit from my friend Louise, visit from Jennifer & Scott. Hazel has been down a couple of times. Both our sons, Tony and Stuart have visited and stayed for dinner. These visitors keep my spirits up, and turn my frown upside down, make me laugh and share stories. The clock hands appear to move even faster than normal when visitors come to Nisbet
Steve has taken me to visit my Dad on a few occasions this month. A couple of times I’ve seen my brother Brian and his wife Margaret at Dads. I’ve also met up with my brother Albert and niece Chiara and my sister Helen & nephew Brandon, and on the last visit to see my Dad I saw Lindsay, Stephen, Sophie, Louis & Patrick.
We have managed a couple of social outings – entertained by The Domestics at The Dalriada in Edinburgh and met up with Susan and Ian from Dumfies and Galloway for a couple of hours. We also met up with folks affected with NETS. The Ann Edgar Charitable Trust is a Scottish Charity – it offers NET Natter Meetings once a month – which has became fairly popular. The meeting on 10th January was busy and a few members were keen on the idea of helping out at a craft fair, raising awareness of NETS and carcinoid syndrome and funds for the charity. One of the members, Barbara, brought along a peg doll she made, we have since called her Ziggy Zebra. This inspired me to make a zebra fabric memory board.
I haven’t been feeling too grand the blasted peg is still leaking, and when I say leaking it’s a tad more than a dripping tap that’s for sure. It started to get bad nearly two weeks ago and get really painful again, my tummy is swollen like a football and the discharge a putrid offensive smell, resembling our septic tank. My nurse took one look at it and said get the doctor to look at this young lady. The GP saw me that day. She took a swab of the discharge and blood tests. It was a Friday – I felt awful. I had a quiet weekend at home. Monday morning at approximately 1130am the telephone rang, it was the GP, I have had the lab on the phone. She said. Both your swab and blood tests have shown you have an infection. I will write you a prescription for antibiotics and get it to the chemist for you for today. We had a discussion on the phone how I was feeling, etc.
One week later and the discharge is not any better. Infact I will go so far to say it looks worse and the pain at times is far more than sore or uncomfortable its aching and sometimes almost unbearable 😦 My nurse is in regularly to change my dressings and see how I am. How long the nurse is in to see me varies. It depends how I am both physically and mentally. All the nurses are always very thorough and look after you very well. On some days the nurse gives you the lift you need. This particular day she advised me to go back to the GP. Back down to the surgery for another appointment. Doctor agrees it looks worse that the last time she saw it. She thinks the best plan of action is another week of antibiotics in the hope it will lift the infection. Fingers crossed it does. If there is still smelly discharge once the antibiotics are finished – go down to the surgery and get it swabbed. I started the second week on Tuesday, today is Friday – I have had 2 of 4 doses today. No difference yet. Really hope it clears up over the weekend.
It was lanreotide week second week of January so on one of my nurse visits she gave me my lanreotide injection. This helps stop me shitting myself and cuts down the flushing on my face and neck. My next injection is due this coming Wednesday and the nurse I like doing the injection best is off on annual leave. I know I will be in very capable hands – but I cant help wondering who I will get. I can see it now – On that day – my treatment injection will be laid out ready for the nurse to administer. Bella will hear the car, think she knows who it is, wag her tail, run to the door, when she sees its someone else, she will run with her tail between her legs up the hall and onto my bed….
Despite this nasty recurrent infection its not all doom and gloom for the first month of 2016. Steve and I have booked a week in Ibiza in June, when my community dietican was here at the house for my 4 weekly home visit a few days ago we discussed how she can help with giving me a letter for the airline/travel company explaining the need for my pump, syringes, feed, etc. I will also get it translated into Spanish. She is easy to get on with, very friendly and makes me laugh.
We also have Lindsay and Stephens wedding to look forward to. This is a festival wedding – it is in June. The week after we come back from Ibiza.
Steve and I will both will be celebrating our 50th birthdays: Steve in June, Me in August. We are having a party for Steve. I like to go to a party -just don’t like to have a party for me. Its our 30th wedding anniversary in August.
Before all these wonderful things in the summer. I’ve got to rid this infection, hopefully the hole will close up round the peg site. I would love to get some more energy if possible. I have a hospital admission in March in Ninewells, Dundee for 5 days for my photosensitivity. Dundee is the only hospital in Scotland with a photobiology unit. I am also scheduled to see Professor Martyn Caplin at The Neuroendocrine Tumour Clinic at The Royal Free Hospital, London. in April.
This week coming is busy enough: nurse coming in to do my dressings on Monday, Wednesday nurse is coming do my dressings and administer my lantreotide injection. Steve has the eye pavilion hospital for a check up after his retina eye surgery. Thursday – I have an appointment with my endocrinologist, Professor Mark Strachan. Think I will have a rest on Friday.
Its been a mixed month. At times I have been feeling really rotten and no matter where I have been I could lie down on the floor and lie in the foetal position. There is nothing too much I can do about how I feel physically. All I can do is take it easy, rest up when my body tell me to. Mentally I try and keep myself upbeat and on top of things. What’s the best remedy if you feel low mentally?? For Me Keeping busy helps. Going to Nets Scotland AECT Net Natter Meeting and talking to others. Having a warm bath. My biggest love of all – taking photographs. Writing. Baking. I’m very fortunate, I find it easy enough to talk and say how I feel. Its natural for everyone to feel like the weight of the world is on their shoulders at some time, its how we deal with that weight that matters.