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”
Dancing with a group of girlfriends to ‘Groove is in the Heart’ a week ago served to re-fill my resilience tanks just as they were getting quite low. It’s been a challenging past few weeks as I have had one abscess after another open up along my wound (counting 4 in total now) due to an infection in my abdomen that was forcing its way out. The result is that I have 4 open holes in my abdomen that need to be covered by wound bags or neo-natal stoma bags, they are all close to each other and close to my main stoma, which is a challenge in terms of fit and therefore I’m experiencing a lot of leakage which is messy, awkward and inconvenient to say the least. The good news, according to my team at the Hampshire Clinic, is that the large deposit of infection/gel is completely independent of my digestive system and it’s not affecting me otherwise (no fever or illness) and therefore it’s not a worry. However, the growing disease in my tummy means that the wounds are unlikely to heal properly on their own. As a result, we travelled to Basingstoke yet again on Friday (we’ve been there a lot lately) and ‘Goz’ cut another hole lower down the scar line on my abdomen and inserted a drain which empties into a large bag strapped to my leg. I won’t pretend that it was a fun procedure, although Karen, one of my brilliant nurses, kept me occupied joking and chatting throughout. The hope is that this drain and gravity will encourage the fluid/gel to come out of one place and eventually I may have only one open wound to manage rather than five. What pushed me over the edge was Goz telling me that my plans for wild swimming are out of the question due to infection risks (as are baths). It’s not the end of the world, but I think it was the straw that broke the camel’s back. I spent Friday and Saturday feeling tearful, tender, sore and sorry for myself and have shed quite a few tears. Once again, thanks to my brilliant girlfriends who came round on Saturday to distract me and make me feel better, and my husband who somehow manages to make me still feel attractive in spite all of the bags on my tummy and drain strapped to my leg, I’m starting to get my mojo back.
So, once again, I am getting my head around a ‘new normal’. I don’t leave the house without a full change of clothes, set of different bags, adhesives, sterile wipes, scissors, etc., and I am learning to cope with managing all of this in a public loo if necessary. It’s not the end of the world – I’m still able to eat and drink normally and, with the right outfits, no one would know that I have all of these bags that need constant emptying and management. It’s just frustrating, tiring and annoying.
However, it was all put into perspective just over a week ago when I got the sad news that one of my PMP Survivor friends had lost her battle with the disease. She was such a bright light and wonderful supporter to all of us that it’s hard to imagine her not being there anymore. She was far too young and had far too much more to do to leave this world, but in the time that she was here, she made a huge impact on so many people. It is a reminder to me that while I can take a bit of time to feel sorry for myself with this latest development, get angry, be frustrated and sad, I then need to move on and make the most of my time and my health. I know that there will be more bumps in the road ahead which I’ll navigate when I come to them. In the meantime, I’m going to find more opportunities to dance to ‘Groove is in the Heart’ and lots of other great tunes.
I love Steve Winwood and “Roll With It” is just what I’ve had to do over the past couple of weeks and what I will keep doing. Despite having had 3 of these major operations or MOAS (Mother Of All Surgeries) in less than five years, I’m still having to remind myself that recovery is not a linear process. The past two weeks have been quite challenging, and I have sometimes felt like I was going in reverse rather than getting better. However, when I think about it, I realise that I am on less pain relief than I was when I first came home, I am doing much more, and all of my organs and scar tissue are still settling.
I continue to wake up most mornings feeling well-rested and full of energy, but that starts to wane by mid to late afternoon. I have a side-effect called Tenesmus which I won’t describe in detail, but it involves cramping in the pelvis and this is what kicks in each afternoon and runs through the evening until I take my pain meds at bedtime. As of today, I am cutting down on the doses of the pain meds and spreading them out from early afternoon until bedtime and so far, it seems to be working…
Last week I eased myself back into work on Tuesday with a focus on meetings in the morning when I feel well and offline work in the afternoon with a nap factored in as well. I was back at Basingstoke last week to see my consultant for my six-week check-in and he was pleased with how things are healing and also that my left leg is no longer swollen. He also reminded me that it’s early days and that I shouldn’t worry about still being on pain meds. Some patients are still in hospital at this stage, so he thought it was great that I managed to recover well enough to go home after two weeks.
Whilst the past couple of weeks have not been easy and a couple of days have been absolutely rock bottom, it’s not all been bad. I’m managing to do my physiotherapy most days and hope that I will eventually regain strength in my left leg, I am able to sit on my Peloton most days for 20-30 minutes and turn my legs at a basic resistance level, and when the weather has been warm and sunny, I’ve been out for some lovely local walks. I’ve even managed to have some of my afternoon naps with Bonzo in the garden in the sun.
I’m looking forward to getting out a bit more and also travelling up to London as restrictions ease a bit more in the coming weeks. I’ve been very nervous to leave the house, not because of Covid, but because of the tenusmus and discomfort. Now that I have worked out a solution with my pain meds, I may be a bit more mobile and I hope that the discomfort will ease as my insides start to heal. If not, I’m sure I will find a way to adapt to another ‘New Normal’. I was able to do so during my chemo, I did so after my ileostomy 17 months ago, and I will do so again. Like everyone else, I am keen to get back to socialising and to being out and doing things and generally making the most of my time while I can. As the blog says, “Brendawontbackdown”.
It was a very emotional homecoming yesterday – being able to physically hug Trend and the children and Bonzo was better than I could have imagined. I didn’t realise until I got home just how hard this last op and particularly the last week has been psychologically. The op was a partial success – they managed to fully remove the tumour under my stoma that was protruding from my abdomen and they have repaired the abdominal wall with mesh which will take a few months to fully bed down. The other tumour, however, in my lower left pelvis, could only be partially removed. Any further removal would have impacted my bladder and bowel and would have had a significant impact on my quality of life/ability to function. As a result, I still have some of the uncomfortable symptoms that I went in with, and I have a very swollen left leg due to tumours near the lymph nodes. It’s slowly coming down and I think with physio and gentle exercise it will eventually return to normal.
Despite these things, I’m physically much stronger than I was after the last op. I haven’t lost any weight and my surgeon continues to be impressed with my ability to heal and to bounce back. I also haven’t needed as much pain relief as I did with the previous ops.
Mentally, however, I think I’m a bit traumatised by the whole thing. It’s hard to explain, but part of it is of course the fact that I’ve been in the hospital for two weeks without Trend by my side every day as with the previous surgeries. The other part is knowing that this op was a temporary fix and that we have no idea how fast it will grow again – hopefully, we are talking about years, but we just don’t know. What we do know is that the next round is likely going to be harder, so I do need to build up my health and fitness and mental resilience again. The cliché of it being a marathon and not a sprint couldn’t be more true in this case, so I’m going to be very disciplined about building in sufficient recovery time to the ‘training plan’.
I’m also conscious that I don’t just write this blog for me but for others who are also going through cancer or other serious illnesses, so I think it’s important to talk about appearances versus reality. I am a very glass half full person, I go through life convinced that smiling and putting on a brave face will make things better, and I hate being weak or feeling vulnerable. As a result, I regularly have people say to me that they were surprised to hear I was unwell as I ‘looked great’ or that they assumed that I had been ‘cured’ or am in ‘remission’. The reality is that this disease is not going away and that no matter how great I may appear on the outside, and no matter how cheerful my disposition, I’m often struggling on the inside – I just hate to show it.
Finally, as I like to end these blogs on a positive note, I want to pay a huge tribute to the wonderful staff at the Hampshire Clinic who have looked after me so well over the past couple of weeks. I can’t say enough about the surgeons who operated on me so skilfully (they spent 5 hours just untangling my organs before they could start the procedure), the anaesthetist who kept me pain-free, and the others who all worked on the surgery. However, I am in awe of all of the nursing staff who looked after me 24/7 with such kindness, care and empathy. They bathed me and washed my hair when I was unable to do it for myself, held my hands when I took my first shaky steps from the bed to the chair, cleaned me up when I was sick, were so very very gentle in removing the tubes and drains and cannulas and also in taking endless amounts of blood, and they made me smile when I was in floods of tears. It wouldn’t be right to say that I was in hospital all on my own for those two weeks – I wasn’t. I had a group of amazing people looking after me and I am so very grateful to each and every one of them.
Difficult day today 3 drains removed from my abdomen, central line taken out, off intravenous feeding and off fentanyl and on to some v light v bland food.
Left leg still v swollen and heavy which is frustrating but should ease over time. Big binder to wear around my swollen midsection for the next three months is minor in the scheme of things but also frustrating.
Mentally one week in is always a difficult time – v tired and emotional from lack of sleep in the evenings, reduction of pain meds and reality of the uphill recover journey all kick in around the one week mark. On a positive note, however, I had a lovely visit through the window with Trendy and managed to make a number of people laugh as I took ‘Lucky Dog’ for a walk down the corridor this evening.
…well they sure as hell weren’t letting the Bonzo in much to his dismay. However, we both enjoyed our drive to Old Basing to wave and chat with Brenda through an upstairs window. Despite an uncomfortable night, Brenda looked good and one has to take stock and remember that today is still only day five post-op. It has also passed me by to a degree that she has had two large doses of chemo and this will need to percolate out of her. At the moment it manifests itself in taste. She has a dressing that has caused a blister and her swollen left leg is still being closely monitored. All these horrid things, she a trooper.
Following our visit, a physio session left her tired out and sensibly she went back to bed. We’ve spent an afternoon going back and forth in frustration as her cricket team failed to fire (I blame the SID for not somehow engineering that her husband and son are in the line up). Hopefully, her planned simultaneous online film viewing with Madelaine this evening will be an easier watch.
The clinic can be a bit of a wilderness at the weekend and Sunday will be a bit of a hump day. Meanwhile, we look forward to a successful Ocado delivery Brenda having wrested back the control of the ordering. Thank goodness she is still in control.