Author: brendawontbackdown

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.

I hadn’t counted on it raining when I embarked on this morning’s visit. Nor that my presence in the car park would require an ABP being issued to deal with the strange man hanging around the refuse disposal area. Oh for a simple Hazmat Suit. Despite these tribulations, I got to see and talk to Brenda through the window on the phone for half an hour. I was able to drop off some mail and I left her delighting at the news that our Ocado order had all gone wrong without her overseeing things.

No sooner had I arrived home than I received a message with the attached. Brenda being escorted from ICU to her room on the Ward. This seems to have happened in double-quick time. Although as yet she is still totally plumbed into everything and we are still at the baby steps stage.

Duff information central here. STOP PRESS Brenda’s stoma has not been moved. Somehow muggins here, picked up this snippet of information. When I first spoke to Brenda yesterday I passed on this information. Fuelled by Fentanyl, this sent Brenda into a vortex of confusion which at one stage had one of the nurses believing her stoma had swapped sides. Anyway, let’s strike this from the record for good and celebrate a bit of Brenda that is still intact.

Today Brenda sounded remarkably like herself and as you can see she is looking as good as anyone with something stuck up their nose can. She has spent five hours sitting up in a La Z Boy type chair which is a new and welcome addition to the ICU. I have ‘Facetimed’ her a couple of times and have, despite a couple of false starts, made an appointment for her to have her haircut on the 29th April as ordered. It seems Brenda has started working through her new ‘to do’ list already.

Otherwise there is little to report. This first stage is pretty much riding the wave of the extraordinary trauma such a big operation causes. I shall pop down to give her a wave through the window tomorrow and let’s keep our fingers crossed that her stay remains as uneventful as possible. Thanks to everyone for their heartfelt good wishes and for all the kind offers of help and menu planning. India is immersed in her IB and Teddy is back from University so we are pretty self contained.

Fantastic to see this smiling face this morning. Just 12 hours after her 9 (or so) hour procedure appeared in good spirits.

I’ve just spoken to Brenda’s mother in Canada to relay the following:

The surgery was as difficult as expected and they have removed as much of the tumour as they can. Brenda’s bowel has been untangled and her stoma moved to the other side of her tummy.

The cytoreductive surgery was followed by hyperthermic intraperitoneal chemotherapy, hot chemo in layman’s terms, a cocktail of two drugs.

Specimens have been taken for analysis with a view to future Immunotherapy.

She has not lost much blood and will be kept asleep until the morning. It has been a long trying day doing nothing so I cannot imagine the wear and tear on Brendan Moran and his team. My thank you to him seemed rather feeble but, what else do you say?

An indomintable, high stepping Brenda made her way to theatre this morning.

This song was introduced to me by Teddy during his 1 hour slot on Bristol University radio this week, and I’ve been listening to it ever since.  According to the dictionary on the Internet it’s an ‘informal North American expression’ meaning ‘force of character, determination, or nerve’.  That’s what I need at the moment, so ‘The Moxie’ it is.

I have been so busy over the past few weeks with work and my boards and various other things that I’ve been able to push tomorrow’s surgery to the back of my mind.  I’ve been upbeat and positive and full of bravado about my upcoming ‘tummy tuck’.  Last night, however, it all fell away as I was getting ready for bed.  The reality suddenly hit me and I felt scared, worried, and very tearful.  It took me by surprise, but it felt good to let it out.
Happily, waking up to the sunshine this morning, walking the dog with Trendy, and enjoying some of our freshly-baked, mother-daughter homemade sourdough made everything feel a bit better.  More tears were shed throughout the day, but I’m definitely feeling more hopeful than I was last night.

This afternoon, when Hillary and I checked into our VIP suite at the Hampshire Clinic, we were greeted by two old friends from my previous ops, and later I had a quick chat with my anaesthetist followed by a visit from Mr. Moran which kept me busy.  More of my former nurses have popped in to say hello and wish me well this evening, and I’ve been overwhelmed with all of the lovely messages, emails, calls and FaceTimes with friends and family.  I even received a link to a ‘Kudoboard’ with some brilliant silly videos, old photos and lovely messages from friends as well.
I couldn’t feel better supported or more loved going into this op, and I’ve got the A-Team doing the surgery, so I’m in as good a place as I can be.

Thank you to everyone who is following the blog and sending messages of support to me, Trend, Teddy, India and to my Mum as well.  And thank you to everyone who is remembering me in their prayers.  It means a lot to all of us.  I’m now handing over to Trend to keep the blog updated for the next few weeks while I work on my Moxie regeneration.