Three years since I have came home from hospital with my peg feed after my sepsis. It has been a learning curve of a journey with great deal of highs and lows. I’m very fortunate to have a fantastic support network; the lifesaving NHS staff, including hospital consultants/nurses/dieticians, GP surgery, home visit team, CENT team and my excellent regular community visits I could not do without from my district nurses; amongst other things they deal with my dressings, peg feed and administer my lanreotide, the emotional support they offer is invaluable.
One of the members of the CENT team comes to see me on a regular basis. I get weighed, we discuss how life has been for me. How I have been , what meds I’m on and what feeds are going down my peg. They are always on the end of the phone if I feel the need to talk in between visits or if I have a question/queerie/worry. A great friendly bunch.
Kat from the CENT team at Edinburgh’s Royal Infirmary came to see me on Monday. We had a good chat and discussed my feeding regime and the speed of the pump. I told her the great news that we managed a wee break to Ibiza. My son Stuart telephoned the airline and told them about my medical condition and that I needed the pump feed and 4 bottles of 500ml per day and 5 bottles of 300mls per day – working out to quite a weight. The airline agreed to give me free 30 kg baggage there and back. Certainly cannot complain about that. After our general discussions I stood on the scales. Not happy; either of us. I’m 3kg lighter than when I came home with the peg feed fitted 3 years ago. I could have cried. I could tell Kat knew I was disappointed, I couldn’t hide it. Kat mentioned how well the tpn worked when I was in hospital. I agreed, that was what saved me and put on the weight when I had my sepsis. She recommends that she writes to my consultant and let him know and suggest that I get a central line – picc or hickman and get home tpn as well as my peg. Got my cardiologist in December and see my consultant after the year; will discuss this weightloss and eating regime then.
For most people the 10th of the month won’t mean very much. But for us folks lucky enough to be involved with The Ann Edgar Charitable Trust (TAECT) up here in Edinburgh we have chosen to have our Net Natter get togethers on the 10th of the month. The meetings don’t only take place in Edinburgh, amongst other places folk get together in Aberdeen and Glasgow.
NET Natter Meetings are informal support meetings which offer an opportunity to meet with others in the (reasonably) local area who are affected by Neuroendocrine tumours and carcinoid syndrome – patients, carers, friends and family.
I’m particularly looking forward to going to this support group today. Since I haven’t seen most of my chums from the group since I organised the music event to raise money for the charity in November. Its these guys that understand how I feel at times, take time to listen. Don’t get me wrong not that other friends and family don’t offer love, support and give great advice at times , but the mutual understanding of fellow ‘netters’ is rather unique.
Since I have been involved with TAECT I’ve had a fairly bumpy ride; in and out of hospital. The usual scans and blood tests. Trips to The Royal Free Hospital in London. Nasal Gastric tube insertion. Gastrostomy tube insertion. Sepsis, with ten week stay in hospital. During all this, amongst other things, the guys I’ve met at the meetings have messaged and telephoned me to see how I am. Visited me at home. Visited me in hospital. Helped me organise the successful tea party. And much more…….
Since November our life has been pretty hectic. My hubby, Steve, who always supports me, is by my side regardless. Has had 5 operations on his eye to try save the sight. Steve has had a detached retina. It has been problematic and not gone the way it should. Here we are in April five operations later and hoping that he will only need to wait another 8 weeks and then get one more surgery.
Needless to say we have found life fairly difficult. After surgery Steve is restricted in driving, after one week as long as he doesn’t get double vision and he can pass the vision test he can drive. This helps a great deal, both physically and emotionally.
Tomorrow morning I have Evelyn my nurse coming to the house to change my dressings and service my peg feed. It will be so good to say to her that we have been to the Net Natter meeting.
I had an appointment at the Western General Hospital with a consultant I have never seen before. The Team she is with is The PACT Team. This is Patient Experience and Anticipatory Care Plan Team. The main purpose of the meeting was to discuss my health problems and for the consultant to take notes and later write up a care plan which can be accessed by A & E staff and out of ours doctors, to better understand my health problems and my preferences. Once the plan is written up a copy will be sent to my consultants, my GP and myself.
It was rather a daunting experience, chatting about any possible imminent admission to hospital. The consultant was lovely, and she explained everything. It gave me every opportunity to talk and ask questions. We discussed what brings me into hospital and what is best for me and what staff would benefit from knowing. She asked me some very personal questions and I gave her truthful answers. It was easy to chat to her, she was kind and caring. She turned the computer screen round so I could see what was type written about me. There it was in black and white: various medical conditions that affect every day life. Just for a moment it was once again like hitting that brick wall. I looked at the screen the words were a blur. Seconds later we were chatting…………
Do I think I will benefit from the care plan? Hell, Yes!! The Doc took note of all the problems; e.g. carcinoid syndrome, profound hypoglycaemia, labile blood pressure, gastrostomy feed tube (leaks), poor co-ordination, photosensitivity, hydrocortisone replacement therapy, lanreotide injections every 21 days etc. etc, etc. And she made a note of what staff need to have available for me. Fingers crossed Im not in anytime soon.
Eleven months ago I switched from nasogastric tube feeding to gastrostomy tube. After a lengthy stay and several other stays in hospital with complications, sepsis and months of continual leakage. It is apparent that the surrounding area is never going to totally heal. The health professionals have tried their best. I am lucky to have such a dedicated team. We have tried many different creams, ointments and dressings. My tummy at times resembles an active volcano and erupts a molten lava of gastric fluid leaving my skin red raw, blistered and very sore. After the trial and error of creams the best one and the one to stay is the cavilon lollipops. They act as a barrier, and its a wonderful life saver I can tell you. As for the dressings, well many have been tried and tested. At one point I looked like I had been shot. I was covered from my breasts to my waist. The nurse on the ward thought it best to keep it all sealed. This didn’t work, after several dressings later, we realised I am allergic to micropore, elastoplast, dressings, and good old fashioned crepe bandage. The dressing that worked was the foam dressing. A hole was cut in the dressing and it was wrapped round my peg. The only trouble with this is the amount I leak out. The dressing takes the leakage but after a time it starts to sit on the dressing and then build up on my tummy.
My nurse, Evelyn, that comes in and changes my dressing at home noticed this. Evelyn is a dog with a bone. One day she came in with a booklet and a different dressing.
Do you fancy giving this a go? She asked me. Can only give it a try was my answer.
So she sat me down and we went through the booklet together, she demonstrated how she was folding the dressing and how she was going to apply it. This dressing is designed to absorb the leakage. And guess what – it does it so well 🙂 I have even noticed a reduction in the odour. The combination of the barrier and the new dressings, my skin is much improved. Its far from perfect and it will always leak. But with the perseverance of Evelyn on the look out for a more suitable dressing life has become more bearable and a tad less painful. Cant see me shifting from the Keramax dressings in a hurry. And as for my nurse well she is a star.
Well today its my birthday. I am half a century – the big 50. Many folk hide their age, dread being fifty and pretend their younger than they are. Me, I’m happy to be here. I feel privileged to say I have hit such a milestone. My fortieth decade was a mixed one. There was many happy events, lots of love and laughter which keeps me going. However, I also had to face a few difficult life challenging times which were so difficult.
I had many occasions to have cause for celebration. Both my sons attended university in this decade furthered their education. Our delightful labradors, Buddy and Bella came into our lives; the unconditional love they give is amazing, I really can’t imagine my life without the hairy beasties. We delivered a litter of puppies from them, and have kept in touch with puppies and owners. Now made some lovely friends. Some wonderful children have been born in the last ten years who are really close to my heart. There have been a few very happy weddings. I have mad many new friends. Need I go on. Life is precious and for living, it is all too easy to get bogged down with our problems. On a personal level Steve and I are as much in love as we were when we were teenagers. I believe this is my weapon – Love.
The one thing I am certain is in the last ten years I felt loved. The first five years were very difficult, I suddenly lost 3 stone in weight, felt very ill, and no-one seemed to know why was wrong with me. It took a while to get my health situation sorted out, but with the love of Steve, the boys and my parents I felt secure. I’ve had a few hairy moments been in hospital with septicaemia for 7 weeks, and boy was that scary. Now got my gastrostomy tube fitted. Life isn’t always easy with a stoma. Ive been admitted with several infections. However, its much better than it was, I have a fantastic medical team and nurses that come to the house which is fantastic. And I’m still here to tell the tale and thats whats important.
The second half of my forties were slightly more challenging than the first emotionally. Amongst other things: A very close uncle died, my youngest son had extensive brain surgery, my Mum died, my eldest son had meningitis, hubby had eye surgery for detached retina. But you know what we got through it all. The boys are doing well. Steve still has problems, and only had surgery last week again, but the brave bugger is dealing with it the only way he knows – full of courage – like a lion. It will be three years on the 9th August that Mum passed. I miss her every day. We had one of those relationships that we spoke or text every day. Mum wouldn’t want me moping around. She was a great character, a beautiful woman that I looked up to and admired.
One day in the consulting room at the hospital my professor handed me a card. It was for the NET Tumour Support Group that I now meet regularly with. . We have all became great friends. Sadly, one of the friends that I was very fond of passed away last year. However, I would rather have spent time with her, laughed, cried, etc, even for one year and then felt the pain of her loss than not have met her at all. we all meet regularly every month and have a great time. Its not doom and gloom, we meet at each others house or in the pub. Partners, friends, carers go too. You can have a look at the charity’s website to see what work they do: www.taect.scot I’m looking forward to helping organise the tea party in Pencaitland in November for NET Cancer Day.
I’ve had cards delivered for my 50th birthday. Including cards from friends in the Net group which is lovely. One of my friends in the group, Barbara was very thoughtful, because my eating is restricted, she made me a flower birthday cake. I could have cried, its so beautiful.
Looking forward to spending my 50’s with Steve. Doing what I enjoy. Taking photos, writing, cuddling my labs, crafting, etc. My big aim is to get back into baking and cooking, just because I’m not eating as I did doesn’t mean I should stop what I love. I got a beautiful mixer last year and boy is it going to get its ass worked off now that I have got over that hurdle. Have a great weekend guys. After Ive finished my treatment today My hubby is taking me to The Edinburgh Festival tonight and tomorrow night. Tonight its Craig Hill, tomorrow its Nina Conti
You look great – that’s the words we all long to hear. We all want to look our best. Whether we are nipping to the supermarket, having a lazy day, or going out for dinner. The last thing I want is folk to be surprised that I look “normal”
So why is it that there are times when people say certain phrases to me that can set my tummy into turmoil and make me feel guilty for having an illness. These words are usually said in such an innocent manner and no malice is ever meant. Sometimes I can get upset by what has been said to me, regardless of how harmless the conversation is. The person paying the compliment is usually always blameless.
The conversations and body language that are directed to me are intended to be kind and gentle. A gentle hand stroking my arm and the words that first come out how are you keeping? One of the ladies in our support network group particularly doesn’t like this phrase. I have spoken to many people whilst I have been in hospital and yes they are affected by what’s said too. Certain words affect folks more than others, the word keeping was one that some found hard to deal with. I’m not quite sure why, as I say it’s always said with such niavity. Perhaps it’s because the word keeping is associated with custody and criminal. Many people with with chronic illnesses have life changing situations after their diagnosis and can often feel like a prisoner in their own home and need the help of others. Maybe this is a possibility why keeping is not liked by this person. I can’t go out on my own, and I’m very grateful for the help I get, not feeling sorry for myself – promise 😘.
Most of the time words said don’t bother me too much at all. I can put them in a box and breathe. What really drives me crazy is the tone that the conversation is spoken to me in. The very pitch can affect my mood, and hence a knock on affect on my health. Most days I will banter and have fun, if something is said in a teasing manner I will take it like water off a ducks back. However if I’m having a difficult day the slightest thing will reduce me to tears.
So why do we want to look good? – why not? I personally want to look like my old self. I want to be my husband’s wife 💕. My wonderful staff at Ninewells hospital in Dundee have specially manufactured coloured cream for my skin to put on every day. The transformation is fantastic. It covers every blemish, wrinkle, gives me a lovely colour. And it looks so natural. Once it’s on properly you wouldn’t know I had cream on. For me it takes a lot of work to look “normal” – I smear my entire body in several creams three times a day. Steve’s cousin Anna commented on how much work it was and how good the transformation the Dundee cream made – this actually made me feel good that she was so open.
The good thing about the chronic illness. It’s on the inside. We can cover it up. Put on the war paint and put on a smile 😀😀 it’s good to smile, it’s infectious. Smile and the world smiles with you. When you are all dressed and tried your hardest to look good, whether you are dressed to the nines or in a tracksuit, and have make up on or not. If I am happy I always look better. I know I am loved and this certainly makes me happy. It can be hard to look good for anyone at anytime but I will say my family and friends do make my life much better.
I love to buy and get treated to nice clothes and accessories. My favourites are Ragamuffin, Fatface, Michael kors, Pandora. My hubby, Steve is so good to me. Steve wants to treat me and make me feel good, he is the one that sees me feeling so rubbish at home. And puts up with my grumpy pants sulking moods 😂😂 – for my sake just as well he loves me.
I have had many suggestions for the name of my gastrostomy tube. I’m so grateful to everyone for all the effort that has been out in.
A fellow blogger, Elaine, has gave me a name that I’m rather struck on. The name Lavita, which means life. Rather apt. For me the tube gives me a better quality of life (when I don’t have sepsis, or any other infection that is). It provides me with my essential nutrients and vitamins – my daily steak and chips or fresh fruit salad if you get my meaning. For many people with a tube it is an essential lifeline and the only source of nourishment.