Anyone else feel like this….

Hello there  Totallyblindsided, and welcome to the forum, where most people will recognise how you are feeling. You don’t say how old you are, but if you’re going through menopause cos of the op then you must be fairly young. I am 69,  I got my diagnosis a year ago, and like you I was totally unprepared for it. I thought I had gone to the hospital that day for a hysteroscopy to deal with a polyp. When they told me my biopsy had found cancer cells I was shocked rigid. The thought that my post menopausal  spotting might be caused by cancer had never even crossed my mind.  I just couldn’t believe what was happening. Even now, when I have finished all treatment and am on three monthly checks, I still can’t quite believe it all happened.

Like you I couldn’t say the word, I still can’t really, I prefer to say rogue or abnormal cells. I didn’t want to tell anyone either, it makes it seem too real. In the end I told my son, the hardest thing I’ve ever had to do, and also a few friends.( Somehow it was easier to talk to them than to family.). My husband told the rest of the family eventually. It was very hard on him, keeping my secret, because he couldn’t get any support for himself.

 I think it really hit me when I had to go to the oncology department for my first brachytherapy session after my op. I was on my own cos of the pandemic restrictions, and I was sitting with all these people who were being treated for cancer, and now I was one of them.

So I don’t really talk about it, if anyone asks how I am I always say fine, and change the subject. I don’t know about you, but I am quite a private person, I don’t like sharing deeply personal information. And I don’t want to be pitied or treated as a “person who has cancer”. So if it upsets you to talk about it at this point in time, maybe just say so and talk about something else!. But if you can find one person who you can talk to when YOU need to talk it may help you, especially if that person is calm, practical, and not over emotional.

Dont forget, you are still the same person as before, even tho you feel as if your life has turned upside down. And you are not alone in feeling the way you do at the moment, we’ve all felt it to a degree. Just come here and have a rant, or chat or ask questions, or share a laugh with complete strangers who are connected.

Viv

Hello and welcome , that sounds like a very fitting name after reading your post. I am unsure of your age but as Jigsaw33 has said it sounds like your young like me, i was 38 when i had my hysterectomy and so hit with the surgical menopause and I know how sudden and hard it can be to deal with the fatigue is especially frustrating because no matter how much you rest it’s difficult to have the energy and I think you have done amazingly well to go working with the NHS so soon after your surgery and i can only imagine how difficult that has been especially during the pandemic. I know I was told that recovery from the surgery alone can cause fatigue for some time after as the body repairs itself and topped with the menopause can be very difficult. You mentioned about getting upset every time you say about having cancer and prefer not to talk about it, yeah i get that especially when your a private person too or it upsets you. I often think our mind some how tries to protect us from it all. But sometimes its good to get it out of your system, people cant understand how you feel if they don’t know. But then its finding the right person, well apart from the lovely ladies here who we all totally get it, i would find a close friend or family member who you can really talk to and who will listen and explain what your going through, no one can fully know unless they have or are going through it but it helps sometimes to get it out. The fact is i think cancer can really blindside us especially when we are younger, I feel as we can tend to be in the believe of being indestructible, I know i was apart from some kidney issues i was pretty fit and healthy so when I eventually had a hystroscopy to determine the cause of the irregular bleeding after being told for months before that I only had two small fibroids and what was I complaining about to be told that it was cancer really shocked me to the core, I felt like I was a fly on the wall listening to someone else get diagnosed. But it took till way after my hysterectomy to sort of stop and think has this all just happened is it a bad dream? Our emotions are all over the place and the emotions during the menopause are something i was told was difficult you can be happy one minute then crying for no apparent reason and the hot flushes that I find embarrassing because of the mega sweating and trying to cover it up with body sprays etc. I feel I have been lucky too as i seem to cope better with the menopause symptoms better then I expected. I know the night of my surgery I couldn’t sleep I felt like a dripping mess of sweat, one of the nurses gave me a damp cloth to wipe myself with and it really helped to reduce heat and i do that now just to cool myself down. I have trouble sometimes with temperature regulation so its windows swigging open then having to wrap up because i am cold. So one thing i got advice from was wear natural materials as much as possible, cotton bedding etc, a fan does help too with the hot flushes. I can’t take HRT because i am high risk breast cancer because of my age so i knew I would have to find a way of dealing with the menopause. The thing with the menopause if it’s natural then your hormone balance changes gradually but obviously surgical menopause its like as one person put it being hit by a freight train it's so sudden, but together we can get though it. All the ladies here are various ages and experience and a wealth of combined knowledge we understand the sort of things your experience so let us be your sounding bar, rant no problem we-are here to help you to deal with it all.

I noticed you haven’t put anything in your profile and would suggest it may help others answer your questions if they know a little bit about you. So if you would like to if you click on your username in the corner a little drop box comes down and if you press profile you can then see groups you have joined etc and there is a profile button you just press edit profile write what you would like to say and then save. You may want to look at mine to see how it looks. 

Sending you a gentle bear hug  

I'm so sorry that your suffering so badly with the menopause symptoms. I'm 61 so I'd already gone through it. You mentioned that you have an underactive thyroid. Almost 30 years ago I was diagnosed with an overactive thyroid and went on to have a thyroidectomy then radioiodine therapy. This made me massively underactive. I remember how ill I felt, I didn't have the energy to even hold my phone to my ear or stir something in a pan. To be honest I thought I had leukemia or MS. I now don't have any thyroid tissue at all. Please get your GP to regularly check your levels. Your thyroid has a huge influence on your body, weight, dry skin and numerous other problems. Take care. Deb

Hi . Like Viv Jigsaw33, this time last year I'd just met the Consultant who confirmed I had cancer and told me what procedures I was going to go through. Due to covid I attended all these meetings on my own. It was surreal, it still is, it's like I'm on the outside looking in.

My hubby isn't particularly supportive, not once did he give me a hugs and say it's going to be ok, more like shrugged his shoulders and said "it is what it is"!. My sister was devastated when I told her but again we couldn't visit, she's at the other end of the country. My bestie was the one who nagged me to contact my GP. Thank God she did, she probably saved my life! She was brilliant and there for me throughout. Some other friend's eyes seem to glaze over as literally they can't handle it and don't want to talk about it.

The ones that can and do handle it are the lovely members here who offered me love and support from the start and made me realise I'm not alone in this. I confess there are days when I have niggling worries - what's that twinge? why do I have a pain there - probably flatulence which I do suffer from more these days LOL.

It might be a good idea for you to take a look at these reading materials to which I've provided a link. Life after cancer. Just click on the link, ladies here and members of other groups have found it useful.

I had a sub-total thyroidectomy years ago and went from Hyperthyroidism to Hypothyroidism and have a daily dose of Levothyroxine which I take one pill in the morning - not had any problems for nearly 20 years so nothing really to worry about there - just need to have a blood test every 6 months.

Yes, others are going through much worse situations, believe me, but this is you we're talking about - you're not alone and come back and vent, rant, cry whenever you want to - we're all here for you.

Sending big hugs, Barb xx

Hi Barb, I had a partial thyroidectomy almost 30 years ago which caused me to become hypothyroid for a couple of years. Strangely it regrew..who knew? I then had radioiodine therapy which plunged me into hypothyroidism. I now have no thyroid tissue at all. I take 125 micrograms of levothyroxine daily. Both my mum and dad were also hyperthyroid too. Deb

Hi there - and welcome, even though no-one really wants to be here.  I'm just starting the cancer journey, so I'm having some of the same concerns as you.

I have a set of responses depending on who's asking.  To most people, I just reply, 'yes, things are going fine thanks' (even though they're not) and change the subject.  Others have shared that they've had a hysterectomy too (far more than I knew about, actually), so I give a bit more detail of my tests and stage of treatment.  Then there's another set - people who are asking because they really care and want to help in whatever way they can.  Those are the people I can explain my feelings - how tired I am, how scared that treatment is not progressing, worries for the future.  There are only a few of those and it's still awkward because I know that they are all dealing with their own concerns and burdens too.  I think it's important for both me and them to realise that they can't fix the problem, but that speaking about it can take some of the sting out of it.  Talking about things on here does help too, as there's not the public embarrassment of looking like a blubbering mess while wiping the tears off the keyboard!

I have had underactive thyroid for about 8 years - it takes time to get the dosage right, but then it's just a tablet every morning and a blood test a few times a year - I consider that one sorted!

Hi, Totallyblindsided,  I am sure so many of us have felt the same as you. I have only recently joined this group after being diagnosed last November. I know how you feel about talking about cancer. I had a Hysterectomy last December and couldn't say the word to anyone without starting to cry. My GP said I shouldn't be afraid to cry whenever I felt I needed to and that my first concern should be my feelings and not anyone else's. I didn't actually agree with this as I had my Husbsnd and sons to think about as well as family and friends. But it's times like this that you find out who can be your true support. I was 61 so had been through the menopause, which was hard enough to cope with on its own but with other issues as well it must be so much harder. I have always found my Clinical Nurse Specialist to be a great help with plenty of excellent advice.

I had a total hysterectomy on the 13th of July due to a leiomyosarcoma in my uterus. It has been completely removed and my lungs and abdo CT's are clear. Apparently it is a rare and aggressive cancer. Despite that I have been told that there is lymphovascular space invasion. (This always makes me think of the old computer game of the same name!) I am seeing the sarcoma consultant at the Christie on the 7th of September. They will decide whether I need adjuvant therapy or just monitor me. I don't know whether to say I have cancer or I've had cancer?? What do other people do? Deb

Hi Totallyblindsided,

I wasn't upset when I found out about my cancer. My husband had throat cancer 14 years ago, so I had got used to the idea, and a lot of the terms used, and treatments. It was more of a case of 'Lets get on with it' for me. I consider myself lucky that I only needed a hysterectomy.

While I had the scans for the operation, they discovered that my thyroid was busy multiplying down the back of my throat!!! Apparently the thyroid has the ability to increase its size to produce more thyroxine (normally on the front in the form of a goitre). I had to be checked out by the thyroid people who were not at all worried, but I am now on Thyroxine in the form of a daily tablet. I am checked each year with a blood test, but I am unaware of anything unusual. I was 72 when this happened and have got used to the fact that the older I get the more tablets I have to take for this, that or the other!!! When I complained to the doctor he said I was lucky to be only on 3 tablets, as most of his patients my age are on 15 a day!!! I'm sure he exaggerated.

Good luck xxx

Me too. Hugs to you xx