The journey home by car was tough and some 4 hours later I am finally back at home. Moving from a hospital bed to my own was difficult at first to adjust to and so was being on my own now. Mum was great and friends rallied round, but having to manage my recovery was my job now. For over two weeks I have had available to me 24/7, an excellent team of medical personnel, attending to all of my needs, but now its down to me, to get through this next stage.
One of the biggest challenges ahead in addition to the management of my stoma was the recovery path from surgery, both physically and mentally. The first week was a difficult and there were many sleepless nights due to pain/discomfortness. Some nights it was easier to sleep on the sofa, whilst some days I just did not feel like getting out of bed. I was tired not just physically but also mentally. Days were bearable but nights were tough and I had to use on occasion sleeping tablets to get some peace.
Prior to leaving hospital, I had a handful of staples removed to allow some excess liquid to be removed. This now left a semi open wound that needed to have its dressing changed every other day. My GP arranged for the services of the district nursing team to undertake this activity and lets say what a difference I found between private medical care and the NHS.
The nurses that visited me at home were great, however the management side of things was not the best and there were numerous occasions when appointments were missed and the excuse given that there was no diary entry for me, resulting in a nurse having to be sent out late at night. The whole experience brought on unnecessary levels of stress, which at a time when I was trying to recuperate, could have easily been avoided.
During the first week at home, my Stoma was causing me some issues in relation to skin irritation and also adhesiveness. I contacted Mr. Botterill my consultant in Leeds and he put in touch with the Stoma nursing team at Leeds General Infirmary. Therese and her team were amazing and after numerous visits to see them, they finally got me to a position where I had a stoma that fitted and barrier creams to address my skin irritation.
This was a huge relief for me and I was extremely happy now…….the stoma plays a huge part in ones life and having one that fits is just like having the correct sized washer on a tap. The wrong size cause leakages and on a number of occasions I had accidents, either from this or when the bag burst. At first it was so embarrassing and the washing machine was on overtime, but the embarrassment soon turned to laughter of “oops….I have just had a little accident”. One of the funniest occasions was when myself Gavin and Jason went to an Indian restaurant. We had just got past the starters when it happened. The staff were great and packed up our mains as a take away so that I could get home for a clean up.
The introduction of the stoma was life changing and maybe not too dissimilar to perhaps changing a babies nappy. On average the stoma had to be emptied 6 times a day and this also having to get up in the middle of the night and depending on one’s diet, this could increase by two fold. However a secret item to combat looseness is Marshmallows….I believe its the gelatin that helps to reduce the liquidity.
Mums take a baby changing bag for trips out….I had a Stoma bag containing several stoma’s, cloths, stoma removal spray, soma cleansers and little black bags for the disposal of used stomas. Ordering of supplies was seamless and was just a one-phone call away, with courier delivery within 48 hours.
One of the things that also came more into play now was my NHS medical card. Being a Cancer patient entitles me to free prescriptions for 5 years which is a god send for cancer patients as during the first 6 months post surgery, my illness could have cost well in excess of £100 per month for medical supplies.
