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.
As we trickle through the home nutrition set-up process Brenda is still at the clinic in Basingstoke. There has been a lot of tinkering under the bonnet, infection-fighting, tweaking levels of sodium, iron and this and that. Today she had a small blood transfusion so she should be bouncing off the walls just about now. She needs to have a Hickman line inserted next week and if all goes to plan we are hoping, with everything crossed, that we will get her home a week tomorrow.
Today we had a long chat with Brendan the surgeon and he has a short term plan to take the pressure of the wait for a transplant.
It has been a long haul this time and Brenda will have been in hospital for longer than any of her past operations. The dog is well and truly fed up with the regime and greets me every evening with a raised eyebrow, head propped on one paw, drumming the ground with the other.
10 days on and we are in a much better place than we were. To make sure we don’t find ourselves in this situation again Brenda is moving to Total Parenteral Nutrition (TPN). Setting up the TPN from home is proving a torturous and lengthy process and as a result, we are stranded in limbo at The Hampshire Clinic in Basingstoke. A Groundhog Day existence of me driving backwards and forwards to spend the day and Brenda wiling away the hours in between. Many thanks for all the emails, cards and messages and the Sandra Morning Coffee video which may go on to break the internet one day.
Neither of us has really felt up to a blog post as we’ve had a pretty gloomy few weeks. However, to keep friends ‘in the know’ here is an update. It has been increasingly apparent that Brenda has been on a downward spiral and that trying to keep her going at home was just not working. We appealed to our lifesaver, Mr Moran, and a day later Brenda was readmitted to the Hampshire Clinic for a cocktail of blood, vitamins and total parenteral nutrition. Hopefully, a few days of this TLC will redirect the direction of travel of the handbasket we find ourselves in. We both have an overwhelming sense of relief that people who understand her case are back on board. As a result, we both had an unbroken night’s sleep for the first time in months. I think that by early next week she should be more her old self and that more normal comms should be reestablished.
As the lyrics go, ‘a good heart these days is hard to find’ but hopefully a good bowel is a bit easier to locate. As of today, I am ‘active’ on the transplant list for a new bowel and abdominal wall.
I feel very fortunate to have been approved for this pioneering surgery. The transplant team at the Churchill Hospital in Oxford have been working with the colorectal surgeons from Basingstoke (led by my very own ‘Mr. Moran’) to do these transplants for a number of years. To date, they have done about 14 for pseudomyxoma patients. It’s not at all straightforward, each one is very different including the number of organs transplanted, and we aren’t expecting a cure but, it could provide a new lease on life. We have been warned of the many risks and of the reality of living with a transplant. We have been told that there is a chance that my quality of life may be worse rather than better. However, my disease is progressing and my kidney (I only have one) and bladder are already being compromised by tumours as are my legs, so I am pleased to have this option.
For those of you who are on social media, you will have seen that I was in hospital last week. The tumours in my abdomen have gone into overdrive of late compromising the function of my ‘waterworks’. Last week I had an operation to try to relieve the pain and constant discomfort that has become a part of my everyday life. If I’m off-camera on calls it is because I’m struggling to find a comfortable position to take them. It is difficult for me to sit upright, stand or walk for any length of time. I’m hoping that it will calm down in time and that I will get used to this new normal as it’s currently quite limiting. I’ve been housebound for the past couple of weeks other than my trips to the hospital. I am going to try some short excursions this weekend and see how I get on.
In the meantime, I have my mobile phone fully charged and at my side and my hospital bag is packed. When it happens, the surgery will take place at the Churchill Hospital in Oxford with both teams of surgeons, and I can expect to be in hospital for at least 6 weeks. We have no idea how long it will take for the right organs to become available. The average waiting time is 4 months, but it could be sooner, or it could take longer.
Until then, I am trying to carry on as usual as best I can. I’m still working, albeit on reduced hours, and I’m trying to stay busy but well-rested. We’ll keep you posted.
Not quite what we had in mind when we set off to Nova Scotia. Brenda has an infection, is being admitted to hospital and will require IV antibiotics. Hopefully, she will only be in for a couple of days. Thanks to Colleen for sorting out an emergency meeting with the amazing Dr Carman Giacomantonio.Continue reading “We’re all going on a Summer Holiday”