A billion degrees outside and we’re back in Basingstoke. Markers shown in a blood test last week suggested that all was not well. A general decline in Brenda’s va-va-voom made us hop in the car for an accelerated follow up. As a result we are back in the clinic. A course of intravenous antibiotics has been started and its effect has produced a positive response.
With any luck Brenda will be home by early next week and our plans to visit Nova Scotia will remain intact. As ever, Brenda is looking a million dollars despite this blip.
We’ve been flying under the radar of late, concentrating on consolidating on positive improvement. Today the makeup came out for the first time. We have to pop back to Basingstoke next week for a day procedure and maybe an overnight stay but, otherwise things are looking up.
Many thanks for all the messages, calls, treats and visits.
We’ve been lying doggo this week. Brenda has not been up to speaking to people and/or looking at her phone. We neither of us had much to say, in truth. It has been a hard, hard stretch. Depressing, sad and at times quite dark. Some respite yesterday as Brenda spent much of the day sleeping. She is finally catching up on a string of tortuous, sleepless nights. Then, this morning I received a message saying ‘Bring my sunglasses.’ Hello, I thought, that sounds positive. Since then, they have been employed shading the bright lights and dizzying excitement of the clinic’s car park. It has been good to get outside and feel this pleasant March sun we’ve been enjoying. Fingers crossed for a good weekend and then, hopefully, we’ll be nearing the home straight next week.
Day four is often a ‘hump’ day in intensive care and so it has been. Having the safety net of the epidural removed has caused a certain amount of anxiety. The complex nature of the operation has resulted in a large wound and several smaller ones. Today Brenda is very aware of them and the fear of more pain as the pain meds are adjusted she finds frightening. She may be tough on the outside but, she is not on the inside. Panic on the dance floor might be something for the disco but, panic in the ICU is not what we want. We’ve had some tears but, the ICU staff has done their best to allay her fears about pain management going forward. We should be out of here tomorrow and back to our friends on the ward.
A big shout out to Brendan Moran and his team for patching up our very own Steve Austin/ Jaime Sommers…better than she was before, better, stronger, faster. Well, something like that.
It has been a big, complicated and ‘dangerous’ operation. Brendan, our surgeon, is always guarded. He isn’t the sort to say…it was tricky but, it was fine. He is more of a…it was very difficult, and we’re pleased with what we have been able to achieve…kinda guy.
I have a broad brush idea of what they have been able achieve and all seems positive. Brenda is her usual indomitable self giving me a gentle scolding on a myriad list of things whilst drifting in and out of Fetanyl-land.
As ever, I can’t thank everyone enough. One of the few perks of doing this for the fourth time is that we know our team of wonderful nurses. I’ve been texted through the night on Brenda’s return to consciousness.
Today is the first full day of Trend’s TPN (intravenous nutrition) training. For 5 hours today, he practiced washing his hands (like a surgeon), putting on sterile gloves, maintaining a sterile environment, setting the IV pump, and connecting and disconnecting my IV line. If that’s not Love, what is?
This is our new normal. I will need to be connected for 12 hours of TPN 5 nights a week as I am no longer able to take on nutrition through eating. Other than the connection and disconnection, it’s not a big deal. I will typically have it overnight and the IV bag and pump are in a backpack that I can carry around with me or put on the floor next to me. It will take some getting used to, but if it gives me the calories and nutrition I need, I will adjust. And, I have a lovely nurse to help me with it!
Hillary and I finally came home today after almost 6 weeks in the hospital. It’s been a long haul but the wonderful team of doctors and nurses at Basingstoke have done a good job of getting me back on my feet and building up my strength. I put on 10 kilos during my stay, thanks to intravenous nutrition (TPN). Tomorrow I will start having TPN at home. A nurse will come to train Trend and me so that we are able to do it ourselves. It means that each evening, I will have a 12-hour drip of all of the calories and nutrition that I need as I am not really able to eat anymore. My tummy has got to a point of being very big and uncomfortable which is normal for this disease.
As a result, I will be back at the Hampshire Clinic in two weeks’ time for another operation major like the previous three. Mr Moran will take out as many of the tumours as he can as well as all of the gel and part of my bowel. However, we are still waiting for the transplant, so if organs come up in the meantime, I will go straight to the transplant surgery. If not, this will give me some relief while I continue to wait. I am a difficult match for organs, so it will take some time.
I can’t really describe how I feel about the upcoming surgery. As I know what to expect, part of me is really dreading it. However, as I am very uncomfortable and it’s getting worse by the day, the other part of me is looking forward to the relief of having the tumours and gel taken out. It will be complicated, particularly as it’s my 4th and there will be a lot of scar tissue, but we really don’t have much choice. I’m lucky that I have such a good surgeon who will do the best he can do.
In the meantime, thank you for all of your kind messages and good wishes. I’m sorry if I don’t reply to all of them or if I’m not always up to a chat. I have good days and bad days and I have to just go with the flow.
We are still waiting for the various entities providing Brenda’s home nutrition (TPN) to come together. With no official word from anyone, this seems as distant a prospect as it did three weeks ago.
Today we arrived at the five weeks in Basingstoke landmark. It is a mark of the toll that this stay has taken, that those keeping us entertained appear to have completely ‘lost it’. (We love you Linsdells).
The one thing we know for sure is that Brenda will have an interim operation on the 14th March (not a transplant). We are hoping for a TPN miracle to get home for a few days before we are back here for that.
Brenda won't back down 