A different opinion

[rosebine]

I was due to start a second cycle of chemo next week. Large tumours no surgery

possible I was told after first lot. New consultant is now going to investigate whether I can have surgery! Not sure how I feel about this, as it would be a very very big op in my case, with not all removed. I live on my own with no relatives and two dogs, Ive been totally independent since my OH died. Lying awake at night worrying if I will accept surgery if its offered. Would not cure the cancer just maybe give me a bit more time. I sort of wish this hadnt been broached now!

[Katmal-UK]

Hi I can understand your quandary. When have you to meet with you Oncologist again? Best advice I can give at this stage is to write down all the questions you can think of so that you can make an informed decision. Do you have anyone who can attend your appointment with you? Big hug, Kathy xx

[rosebine in reply to Katmal-UK]

It will likely be a phone consult again, but even if face to face cant take anyone with me due to Covid!

[Katmal-UK in reply to rosebine]

I did wonder about that. Id definitely have a list of questions x

[Lindaura]

Dear Rose,

First: surgery... when I became ill, I was in such bad shape, that although mid Chemo surgery offered the best outcome, no one thought I would be strong enough to have it.

Turned out that once I was stabilised in hospital with IV fluids and vitamins, I responded really well to the Chemo and my cancer was so destroyer, that it was a much simpler debulking operation.

4 chemos/Surgery/2 Chemos and I tested as NED - no evidence of disease!

So, yes, go for surgery.

Next: Friends and Family. You need them. Reach out. They will surprise you.

I am from the USA. I was living with my husband and the rest of my large family was in Los Angeles and San Francisco.

When I became suddenly so ill, my daughter moved back home to help out, my 70 year old sister flew over from LA and helped me through the first 2 months of Chemo.

All our neighbours chipped in to help my husband. One neighbour offered and came through, with making dinners for our family once each week. I could never eat these dinners, but my family loved them, and there was always enough for two dinners!

I did shut out my closest friends while I was so sick, but after I was better- after my operation, I let them back into my life, and they were all so sweet and concerned, I regretted not letting them in sooner.

So: please reach out to friends and family. If you really have no one, reach out to MacMillan Cancer Charity, they are extremely helpful.

My best wishes to you.

Kind regards,

Laura

[bamboo89]

I had the full debulking surgery in January 2018 and I live alone. I got out of hospital 9 days later on a Friday, and my sister came to stay with me that day and stayed the weekend. I'd already spoken to a local Care agency prior to surgery, but obviously couldn't finalise the details because I didn't know when I'd be out of hospital, so my sister staying that weekend and not leaving till the Monday lunchtime gave me time to finalise a carer to come in in the mornings to help me shower and get dressed, run the hoover over, maybe bring a bit of shopping or whatever, just for an hour each day. I do recall they couldn't send a carer early because of the short notice, but I was able to have one around 10.30, 11, and that was fine. I needed that for about 7 days, after that I managed, but not being able to drive was a little more difficult. I ended up paying a cab to take me to my GP surgery to get my staples removed, and a cab back home again. If they are going to use staples for you, you might want to ask/find out who will be prepared to remove them later on, especially if your doctor isn't functioning normally right now because of Covid.

Obviously, Covid is a big factor right now - its whether you can find someone to stay with you for a couple of days and/or get a carer to come in... I don't think I'd have managed without my sister or a carer, I had to shower daily to keep the wound clean and I couldn't reach below my knees to wash and dry myself until about 9 days later. I could cook and wash up, but couldn't lift a full kettle - I was able to go up and down the 3 flights of stairs outside my flat, carefully,in fact I was told to do that at least daily after surgery by the surgeon, whether I needed to or not, so its not like you can't do anything at all. I slept a lot too and used online grocery shopping to get food delivered - that could be an issue right now, if you don't have a regular online grocery supplier,because of Covid and the difficulty with getting delivery slots. Otherwise, Oakhouse Foods or Wiltshire Farm Foods deliver frozen ready meals weekly and all you have to do is heat those up, usually in the microwave, sometimes the oven.

If you have a local palliative care team attached to a hospice, ask your GP if you can sign up with them - they will provide support and assistance after you come out of hospital, they are quite helpful, but check if they are allowed to do that with Covid going on. Don't be put off by the terms 'hospice' and 'palliative' - it doesn't mean your demise is imminent!

Really, you will need to get organised beforehand; you will need a little assistance, and finding out if that's possible prior to surgery is important, but otherwise, the surgery is doable if you live alone without lots of family, friends and neighbours nearby, and I didn't find it too difficult after I got home.

You've obviously been having chemo, so seems like you can manage that on your own (as I have, although my palliative care nurse did come out on two occasions to make sure I was alright) hopefully you can put things in place to get you through the 10 days after surgery too.

Good luck

Miriam

[Mumsie13]

Hi. I was in a similar quandary to you a month or so ago. Literally six days before I was due to start chemo my gynaecologist made an appointment to discuss surgery which I had been told was not an option. He proposed ultra radical surgery and, I remember this very clearly, he said they would only do the operation if the intention was to take away every bit of cancer they could find away. If they had to leave anything behind it would be of no benefit to me in terms of adding to life expectancy. He gave me lots of facts and figures from a desktop study which really weren't relative me and, because of serious post op complications from two years ago and too many 'what ifs', I decided the risks far outweighed rather doubtful benefits. I'm now coming up to my second session of chemo. I am not trying to be alarmist, there is some good advice in these replies, I am just giving you the benefit of my experience and perhaps some questions to raise some of which I think you may have already worked out. We are all different and I'm sure you will decide what is best for you with more info. Whatever you decide I hope the outcome is what you wish. 🤗 Jackie

[rosebine]

Thanks for your replies, very helpful. Mumsie13, I think they will decide surgery not viable again as before I think there was some on my diaphragm and whether this was not

accessible I dont know, first 6 cycles of chemo didnt shift it. I worried because of the size of the tumours and how huge my stomach is now, when the chemo stops working will everything inside be squashed together ! Got very distressed seeing a lady in the Ct scan room with an absolutely huge abdomen although she was a tiny woman, cant get that out of my head. Sorry probably TMI for here

[rosebine]

|Meant to say, had one lot of 6 chemo , get confused with cycles and rounds, second lot of 6 proposed !

[Irisisme]

Hi Rosebine,

I had a melon too! Although they never told whether it was a honeydew or a watermelon!

That was in 2016 and I’m still here and leading a relatively normal life, so don’t give up yet,please🙏

I also had lesions on the diaphragm and liver and spleen - in fact everywhere but my bladder and kidneys. They took 8+ litres of fluid from my abdomen initially- plus more later and some from my chest.

At first they didn’t think surgery would be a viable option For me either but I had Neo-adjuvant chemo and it reduced the lesions enough for a specialist surgeon to take on the job. It is sometimes a matter of finding a surgeon who is good enough and brave enough to take on the task. Optimum debulking is removing all lesions bigger than 2 mm NOT every bit of cancer inside you!

My surgery took many hours (7, I think) but most lesions were removed. My entire bowel was “like sandpaper” when it ought to be smooth - that was due to tiny cancer seeds which were all through my abdomen. They were left in and I am considered “palliative only”. Well, that was in January 2017 and I am currently enjoying the sunshine in Spain and having a great time. Yes, I still have some health issues and have to be back in the UK for more tests in December, but considering that in 2016/17 I was planning my funeral I have learnt that life can be amazing, surprising and just absolutely WONDERFUL 😁 even if those seeds ARE still inside me!

You can read my story in my profile. I just wonder why there isn’t more that can be done for you. Please don’t give up n yourself and do demand the very best of treatments, and if you aren’t getting that now, do seek a second opinion.

I send virtual hugs and the very best of luck 🍀🍀🍀

Iris 🤗🤗

[Irisisme]

Ps Rosebine - your local Hospice may be a life-line if you have care issues ❤️