how, what, when, why?

Hi Dreamer, welcome to the group! I was diagnosed this time last year, and had my hysterectomy in January 22. I can definitely relate to the sensations of the mind whirling around and finding it hard to latch onto anything, struggling to absorb things and to let them settle, and feeling overwhelmed. I’m sure too there’s an element of shock and its after effects as it can seem so sudden, and also a bit unreal as many of us have virtually no symptoms and don’t feel or look unwell. You hit the nail on the head when you get home mentioned control - I heard or read it somewhere that anxiety comes not from the thing we’re worrying about, but from not feeling in control, so it can help us to learn to just let go and go with it. I found it helpful to try and learn to focus on what each day brought, on the here and now rather than tomorrow or the next day etc. 

What eye op are you due to have? Also when was your MRI? I got my staging MRI results only three days afterwards as they happened to be back on the day my MDT met, but I think most women usually have to wait a bit longer. My pre-assessment for my hysterectomy happened 3 weeks later, and then my hysterectomy 5 weeks after that.

Thanks for your response MarmiteFan59. I think there is an element of shock which I am only just adjusting to. I thought I was ok (ish) immediately after the diagnosis but think I delayed a lot of the emotional aspect by throwing myself into a whirlwind of activity of getting more information, organising someone to feed the cat while I am in hospital, getting food deliveries sorted (as I can't drive at the moment)etc. plus I had the pre-op for my eye surgery 2 days before being given the diagnosis. At that point I still intended to  have the eye surgery  - a vitrectomy which is done as a day patient - but the recovery from that involves having to position your head in such a way that you are pretty much immobile for 14 days. I realised that I would just spend that time thinking about the cancer and the forthcoming hysterectomy and probably getting in a state about it, so decided to postpone the eye thing until Spring. I can still read/watch tv etc. and get out and about (myasthenia fatigue allowing) so I can at least distract myself a bit. I had my MRI last Saturday (29th) but had had a contrast CT scan just 2 weeks before that and the hysteroscopy on the 14th October. I keep saying that I should get a loyalty card for the hospital as I seem to have had one scan after another since February 22, and each one seems to flag up something else - all seemingly unrelated - so as much as I am a huge supporter of the NHS (and my daughter is a senior nurse) and extremely grateful for it, I am also feeling rather worn down by it all. Even yesterday I had notification from the GP that my cholesterol is high (after routine blood test) and I just thought "what now?". When I am feeling calm I can be quite rational about it all and even happy that things have been found. If it hadn't been for the myasthenia diagnosis which meant I had a chest scan to check the thymus gland, which was fine but showed up a very small nodule in my lung (and which the chest doctors are monitoring but are not too concerned with) and then led to a chest/abdomen/pelvis scan, which led to a PET scan which found the uterine cancer then none of these things would have been discovered until much later - so I tell myself that it's all good. It's just those times when I am tired (but can't sleep) that the old brain goes into overdrive. I have always been a very independent person and until I took early retirement some years ago worked in a very mentally demanding job, and part of my nature is that I tend to be very organised and quite busy, but I am also a very private person. Lately I feel as if my whole life is being "picked over" by various health professionals and even though it is for my benefit, part of me wants to run away and hide. I know I am being a bit over-dramatic and I also know that I will cope with whatever has to happen but at the same time I also think it's important to acknowledge that sometimes it just feels hard to stay positive. I think I will feel better once I have a date scheduled for the op.

Hi again dreamer, bless you, I do feel for you as I also don’t like the feeling of having my health discussed and scrutinised and being talked about by other people. I’m also not that keen on other people generally lol. Also I’ll tell you here and now that it’s okay not to feel positive all the time and also that putting ourselves under pressure to be positive is not a helpful thing. I totally get the planning and busy-ness thing as a way of accepting what’s happening and coping, and so I thought I’d share a link for you here re what to pack in your overnight bag for your hysterectomy. I found getting ready for that really helpful and comforting. The thread was started by MrsBJH and has been added to by others. For me the most important things were my own pillow, squash and snacks, but it will vary from person to person. 
https://community.macmillan.org.uk/cancer_types/womb-cancer-forum/f/general/217904/what-to-take-in-my-overnight-bag

Thanks again, MarmiteFan59. I'm not much of a people person either!

I have been listing stuff to take into hospital - hoping to be in and out quite quickly but obviously it can't be predicted. How were you after your surgery? Although my daughter will take time off to help me out, she won't be able to be with me all day and night (apart from the first night she said she will stay) as she doesn't live that close by and has her own commitments. I was thinking of getting a care agency to come in for a week or two, say once or twice a day, just to keep on top of housework and make sure I have food prepared. Also to have someone in the house whilst I take a shower, although I won't want help with actual showering (I hope). Again, I know it can't be predicted how my recovery will go and maybe I am being over-cautious but having no experience of this type of surgery I don't know what to expect. I have heard varying stories from friends ranging from - "Oh, you won't even be able to lift a kettle for weeks". to "There's nothing to it, I was out shopping a week later". I did speak to the Macmillan nurse yesterday and she was very helpful about some of my worries, and briefly explained the findings of the MRI, which all seem quite positive although as well as the cancer I have several large fibroids. I think she said 2 were around 5-6 cms plus some other sizeable ones, but when I put the phone down I wondered if she had said millimeters as that seems really large to me! Probably shows how much I know about my own body! She also said that there was, at this stage, no indication that it had gone beyond the uterus. Apparently the MDT will discuss on Tuesday and she will ring me with the outcome of that, and hopefully a potential surgery date.

I do feel a bit better having had that discussion with her, plus finding this web-site, and also for just admitting that I am finding it all a bit scary. I also got a big grocery delivery - stocking up on some freezer meals and tea-bags, etc. in readiness - and I still haven't been able to fit everything into cupboards. I only have a 2 bed bungalow and storage is sadly lacking, so today's task is to get that sorted and hope I remember where I put everything! I hope you have a good weekend.

Hi, I had surgery 6th Oct, 2 nights in hospital as blood pressure was low. By far the worst after effect for me were gas pains 

I was bloated and uncomfortable but able to move around well and complete all the basic jobs to look after myself.

Boiling a small kettle, heating food, washing etc.

I started on the recommended physio excersises on day 3 which I have increased now at week 4

Keep active, sleep alot, rest in between, my daughter did stay first night but it was easier on my own, both daughters provided me with healthy soups and foods to heat up.

I had the laparoscopic surgery

Keep well x

Thank you so much for taking the time to respond. I find it very hard to speak about my worries to close family and friends as I think I am trying to be cheerful and positive around them. The cancer nurse is very good but somehow it seems easier to discuss these things with total strangers (that might just be me!).

 I know everyone's recovery rate will be different but it does help to put my mind at rest a bit. Unfortunately (fortunately?) I have little experience of ill-health (although this year seems to be trying to remedy that for me), a very overactive imagination, and being diagnosed earlier this year with an autoimmune condition which can cause muscle weakness and general fatigue, (and which can be exacerbated by stress),  one scenario in my head is that I will be totally unable to do things for myself. That's almost as scary as having been told I have cancer! To be honest, my daughter won't let me become an invalid - as a nurse herself (although different area of expertise) she has stressed the importance of getting up and moving around gently, but regularly, afterwards, and if I don't she will probably be having stern words with me! 

Thanks and hope your recovery is going well.

Hi Dreamer

I have just read all your posts on this link, and I could have written it all myself we are so similar. I too was diagnosed at the end of October I have had an MRI a CT and have just heard from the hospital today that I now need a PET scan. Like you I am an organised person and try to keep busy to stop myself from thinking. I also live alone so there is no one to talk this over with. I have 2 very supportive sons who plan to look after me post-op I would just like to know when it will be. The irony is I feel absolutely fine, but I suspect that will change once I have had the surgery, until I start to heal. I am also a very positive person and don't want this to dominate my life.

Best wishes

Hi Astra1, Thankyou for taking the time to read and reply. I'm sorry you are a fellow traveller on this unwanted journey and hope you keep as positive as you can. I saw your own post but thought it easier to reply here. I have had a PET scan as originally doctors found a "nodule" in my lung after a CT scan (for a completely different condition), and that was then the womb problem showed up. I then had a pelvic CT scan and internal ultrasound which showed fibroids and "an area of concern" hidden by the fibroids. Then the hysteroscopy and biopsy (fun, not!) and the diagnosis of the cancer. I have since had an MRI and on Wednesday was given a date of 24th November for the hysterectomy (hopefully keyhole surgery) - providing they can arrange the pre-op assessment in time. I have been through every emotion possible I think, obviously fear although the indications are that it is a grade 1a and contained within the womb, relief that it has been found early on (I hope) as I have had absolutely no symptoms whatsoever having sailed through the menopause some years ago. I did get very "wobbly" last week and imagined this "thing" was spreading through my body, and that I was going to become very disabled and in need of care afterwards. The Macmillan nurse has been wonderful - I had to email her my worries as I couldn't even talk about it without crying, and she has not only given me the factual information about the MRI/biopsy findings in an easily understandable manner but she has reassured me that it is perfectly normal to feel this way. She also suggested some free counselling sessions which BUPA are offering through the Macmillan website, but I haven't looked into that. I think speaking to the nurse and this forum (which my daughter found for me) has allowed me to get a lot of things out of my system, although I know they are still lurking. It is a mixed blessing having a daughter who is a health-care professional. On the one hand she can explain some of the medical jargon to me and when she has attended appointments has asked things that hadn't occurred to me, but on the other hand we both feel it is important that we keep a mother/daughter relationship rather than her turning into my carer. If the operation goes ahead on the 24th, which is a Thursday, she will be able to be with me for the next couple of days and not have to take too much time off work. She has been an absolute rock throughout this year but I know she obviously has her own emotions to work through. Luckily she has some close friends she is able to offload onto and we do have a very good relationship so are both able to admit when we need some decompression time. Last night she and my twin teenage grandsons (from my other daughter who passed away last year) came over and we had a Chinese takeaway and it as so nice to have just a relaxed evening talking about their college experiences and plans instead of illness, and hospital appointments, and fears. So today I am feeling ok about things and weeded the driveway as it was such a nice day. I have started to think about what to pack etc. for hospital and am planning a grocery delivery a couple of days before I go in so I have some easy meals, oh, and someone to feed the cat. As for the lung nodule - a follow up CT showed it had not changed in 4 months so I will be scanned again in 8 months. I was due to be having a vitrectomy (eye surgery similar to cataract operation) this week but have postponed that until Spring 2023, and I am learning to cope with having myasthenia gravis which was diagnosed in Spring 2022, and which started all of these different scans and tests which have found all the other problems. So I really do count myself as both unfortunate for having such a run of ill-health (especially after the sadness of losing my elder daughter last year) but also very fortunate, and grateful, that these things have been discovered, and hopefully are treatable. I guess all we can do is keep on keeping on. Best wishes to you and hope you get some news soon.

Hi dreamer

Many thanks for the reply and your view on this journey we are on. At least you have a date for your surgery that gives you something to work towards. I have been trying to get ahead with jobs and I have today been to do some Christmas shopping which went really well at least that is something done. I was so sorry to hear that you had lost a daughter you are probably still coping with the grief. I lost my father during the pandemic (not to Covid) and my husband died in 2016 from pancreatic cancer. That was my only experience of cancer until now.

If we don't speak again before your op all the best and I will be quizzing you afterwards for all the do's and don'ts when you feel up to it.