Cancer Support Thread 85 - Hoping for a positive 2023

[AGreatUsername]

Starting a new thread as the old one is almost full.

Welcome one and all, this is a thread for those with cancer and those who are awaiting tests for cancer. We offer support, a place to rant/vent/cry and ask questions without judgement. As always maybe we can do a quick who’s who at the start of this thread for newbies.

Heres hoping for a positive 2023 for us all.

I’m a long term poster on the thread with frequent name changes.

Im mid 60’s. Mum to 5. Nana to 8. I live in the Middle East and have done
Since I was 19.

Just over 2 years ago I was diagnosed with stage 1a Mucinous ovarian cancer after having a 6kg cyst removed. Reading that sentence back it makes it all sound so simple but there were a few twists and turns along the way and I’m pretty sure if Covid hadn’t meant two routine gynae appts being cancelled my pathology would have been benign and not cancer.

On the day everything unfolded I had a had what’s called in old terms, a nervous breakdown. It had been a long time coming and it all really was the straw that broke this camels back. People ask how it could have happened so suddenly, within hours, but all I can say is that it did. If the circumstances are correct it can happen at anytime, to anyone.

Fortunately, I didn’t need chemotherapy. My debulking surgery was enough to take care of things for now. And that’s the way I hope it stays.

Suffice to say my journey has been in my head and it’s been a long road back to recovery. Initially I was on anti-psychotic medication, not that I was psychotic, you can be given the medication for other reasons to do with mental health and after a few months that was changed to a high dose of anti anxiety medication. Nowadays though that dose has been reduced to a 10mg daily does and I know I will be on it forever. Through choice.

Like almost everyone else here I don’t really cope well with 6 monthly check ups/tests. In fact when I had a heart echo a few days ago I had to ask them to stop but thankfully I was 30seconds away from the end of it and did actually manage it.

Im having a knee replaced in two weeks. Very unexpectedly. A routine treatment I have every 6 months to lubricate my arthritic knees went wrong, though no one’s seems to know why, and the result is that I’m now on crutches and my left knee is the size of a clootie dumpling. I’m in agony. I know I could have probably tried steroid injections to sort it out but I’m going straight for the new knee as I’d have needed one further down the road anyway. Along the way there’s been an MRI and Ex-rays and of course I was imaging I had knee cancer. Is there such a thing?🙈.

I’m very much a hands on grandma and I’m with some my grandchildren every day either looking after the wee ones or taking the others to school and hobbies. One of my sons is on his own with his children and when he’s flying the children are with me at my house, or if my son who’s severely disabled is needing very careful handling then I go and stay at my sons house with the children. My son stays at home with his live in carers whilst I’m away or just at the shops.

I’m also a traveler and I’m very happy going on my solo holidays as well as coming back to the Uk a couple of times a year to visit my family.

Mowly, you’ve been in my thoughts. Xxx

Also, am sending heartfelt good wishes to everyone here, old and new. Xxxx

@mowly77 - just to say how sorry I was to read your post. That's all so tough, and I wish I could think of anything helpful to say. Don't feel you can't post how you're feeling because it's hard for others to read - it's obviously even harder for you to live.

@mowly77 You & your beautiful Little One are in my thoughts. I can’t begin to imagine how hard this is for you. Is there are a family around unreliable partner that can help ?

@NanaDonuts wishing you all the best for your knee surgery and hoping your recovery is straightforward and pain free. I can completely relate to your knee cancer, I am a very anxious person and since all my troubles started in the protracted run-up to my diagnosis I have been on anti-anxiety medication. I don't intend to come off them either. About a week ago, I diagnosed myself with toe cancer, or at the very least a blood clot in my toe caused by something sinister. I'm on the treatment dose of anti-coagulants due to recurrent DVTs and the chemo I'm currently on so the blood clot felt less likely, however I prodded at it and inspected it for a couple of hours. When I'd popped another beta blocker and sat down for a while, that toe and the one next to it started itching and burning and I remembered the chilblains I had as a child. Unless you're anxious, no amount of reasoning can reassure you and I also struggle with the check-ups terribly.

Having Covid delay things happened to me too. I presented with 2 DVTs in the same leg in February 2020 and at my follow-up in the May, the haematologist decided a CT, which would normally be the routine investigation for an unprovoked DVT, was more of a unnecessary risk for Covid exposure as my blood tests were fine and I didn't have any concerning symptoms. At my subsequent follow-up in the August of 2020, she found my haemoglobin to be even higher and I then found out that it had only just been under the boundary of normal previously. She ordered a CT to check my liver and spleen for what she thought was a blood cancer I had which would have explained the DVTs. I had the CT in September which showed my liver and spleen to be clear but picked up the tumour on my ovary. I then had a biopsy, of which the tumour sample had to be rechecked, and it was delay after delay as there was 'Covid don't you know' and I was made to feel like I was being a nuisance in wanting my treatment to start. I eventually began chemo in January 2021, almost a year from my original DVTs. I have stage 3c ovarian cancer and it takes all my effort not not dwell on what my prognosis would be had Covid not happened so I can relate to your thoughts on your pathology.

@mowly77 just to say how sorry I am to read your post. I don’t have any words of advice but just wanted to say you and your little one are in my thoughts.

I’ve managed to get the MRI and Ct completed this week. I’ve been told the medical team will discuss my case next Friday morning and see me next Friday afternoon. However, after been told it’s a grade 3 her2+ 50mm and the lymph nodes look infected I’m not sure how I will cope this week. I know it sounds ridiculous but I feel like I can feel the cancer spreading. My chest feels so tight and my arm feels weak and stiff. I keep thinking how did I not read the signs before?

I’m sorry if I’m moaning but the terror is so sharp. It’s my daughters 8th birthday tomorrow. I just feel so, so sad.

Thanks Top We are here until 2nd and today we went out to a friends chateau. MIL was originally planning to come with us then backed out and we had a nice day out. We have a NYE party as well. She is an amazing cook but has a very sharp tongue. Tonight she was shouting at DD again for speaking English to me and staying in her room all day and then she shouted at DH that his lack of using his hearing aid meant he did not hear her asking him to buy extra baguette and so the whole day had been a catastrophy due to him.

Oh goodness, your French MIL sounds almost like a caricature of unkindness, Silkie. I hope you still manage to find some pleasure in your stay.

@Whattodotomorrow - the terror is real, but the sensations probably aren't. I understand where you are though - I had a suspected liver met after my CT scan, and it was a horrible wait for the results of the MRI. My only advice is to try to find distraction where you can.

Quick question for anyone who has used frozen socks/mitts for taxane chemo. Are there any brands or types you would particularly recommend? I have my first docetaxel on Weds and wasn't going to bother. I suffer from raynauds so thought it would be too unpleasant, plus I have my cannula in my right hand, so can't ice that hand anyway - and might find it too difficult to fiddle with the icepacks etc with only my left hand. But I am having a last minute panic and now wonder if I should. A complication is that I am an hour from the hospital, and they are nearly always running late, so even if I take a coolbox, they will have been out of the freezer for quite a while by the time treatment starts.
@TopOfTheCliff - have I remembered correctly that you used them? Whatever I pick will need to be available on Amazon prime for them to come on time. Thank you.

I had a very emotional visit to my GP yesterday, and have been signed off work for another 4 weeks and prescribed antidepressants. The letter asking that I'm prescribed Tamoxifen seems to have got lost and with the anxiety I'm already feeling from coming off HRT I'm really concerned about my ability to cope at work if the Tamoxifen makes it worse, but until they can get me started on it it's impossible to know. The background is that my first hormone test was done too soon and had to be repeated which was difficult to arrange as most of my RT appointments were moved to evenings and the RT hospital is up to an hour away with traffic, I'm struggling with the basics at the moment.

Anyway I forgot to ask her for something for the dermatitis I've developed under my treatment boob, is there anything I can get OTC ? I have hydrocortisone cream and sudocreme in the house and the E45 I'm using to moisturise.

I went up North for Xmas. How we cried saying goodbye. My mother never even asked about it. I guess its her way of coming. I feel my groin is getting bigger how long can it stay in the lmyph nodes before moving on.

my next appt with the consultant is the 4th and I have the skin cancer specialist on the 5th just to see if it has come from there. I think thats the last box to tick. Please tell me if this would be wrong of me. The hospital to see my oncologist is miles away and Im sick of asking for lifts. Its just very awkward on public transport. My gut feeling is Im going to go all the way there and hes just going to tell me we need the results from the skin specialist who im not seeing until the day after. Would it be rude to ring his nurse and ask if it could be a phone appointment?

I would think it would be OK, My hospital is miles away too and unless I can drive I cant get there by public transport. I have not seen my consultant in person for nearly two years. It sworth asking, though he may want a face to face to have an in depth discussion

@EachandEveryone I don't think it would be rude to ask, the nurse can always decline if they really want to see you. Some of the reason these appointments are face-to-face now is that many people prefer them. I have seen my oncologist once in two years and all my other appointments are on the phone with him. I'm so sorry your mother didn't ask after you, it really hurts I know. I have a very strained relationship with my mother and she didn't want to talk about my diagnosis and treatment at all, still doesn't. The night before my major surgery she wanted to discuss fridge-freezers with me and I cried at the lack of support and kindness from her. It's a whole other thread but I want you to know that I do understand how it feels, cancer is so isolating anyway and this just makes the whole thing even harder Xxx.

@dotty2 the brand I bought on Amazon was Halo Mask ice gloves and socks. You would need spare ice packs to swap over but I just used picnic freezer blocks which I took in a cool bag and the nurses kept them in the fridge for me till half time. The gloves and socks are soft lined so don’t feel cold to touch. Did they work? I don’t know really as I have mild numbness and tingling in my hands and feet now but it could have been much worse.

I’m feeling a bit better every day now. Tested negative so have been to see MIL and SIL but will have a quiet New Year’s Eve unless DSS turns up with 20 friends as has happened a few times. I channel them down to the basement!
Regards to all
Top

Thanks, @TopOfTheCliff - very helpful. Of course, can't know if it would have been worse if you hadn't used them. I guess if I only use them on my left hand, I'll have a control for my unscientific study! Pleased to hear you are feeling a little better.

@EachandEveryone - I'm pleased you made it north in spite of train strikes etc, but sorry about your lack of family support. My sister also managed not to ask me how I was (or anything else, come to that) when I saw her over Christmas.

@MrsMontyD - sorry I can't help re the dermatitis, but just wanted to say I'm sorry that you're struggling with anxiety etc. Did you know you can apply for free counselling via Macmillan? I have just started and have had one session so far. I have to say, I didn't really find it all that helpful - I think I'd have got more out of a session with a sympathetic friend, but it's early days.

Thanks, I did CBT a while ago which helped, what I really need is HRT but that's not possible now.

@EachandEveryone I was reflecting on your mum failing to discuss your health or the impending storm. It is the worst sort of denial as it is hurtful to you without gaining her very much. I suppose by her not mentioning it you are spared the pointless stories about the neighbour who had something similar and died of it etc. but really it sucks as it just seems like she doesn’t want to hear about your feelings. I was a bit irritated by my lovely DM88 who is very repetitive and keeps telling over and over what a good example I set her and how well I have done. She also says she wishes it was her with the cancer. I am beginning to realise she has been a real supporter cheering me onward every time I see her even though she says the same thing fifteen times.
I do hope next week is going to give you some answers and a plan for treatment so you can get cracking on seeing off this unwanted invader.

I am seeing in the New Year happily munching on a plate of cheese and biscuits, a box of chocolates and a nice bottle of Gordon’s alcohol free gin that is very fruity. Life could be a lot worse as I am warm and safe, all my bills are paid and I have no appointments pending at all! Sending best wishes to you all for the New Year. May it be a better one for all of us!
Top x

I’m currently trying to not read this thread too much, but I’m thinking if you all and all the things going on in all our lives. @mowly77 especially you and your little girl.

I am wishing us all a very happy 2023 with hopefully plenty of joy and happy moments.

Thank you. Thank you all, so very much, for reassuring me this is a space for everyone, no matter what part or stage of this crazy cancer rollercoaster we’re all riding. Thinking of you all, especially @thereisonlyoneofme & @AGreatUsername, & everyone waiting for treatment plans, results, & all and any appointments over this crazy frustrating dead time.

I won’t say ‘happy new year’, coz let’s face it — it’s gonna be a challenging one. But I willsimply leave this here for my sisters: We have turned the year.

Thinking of you all, and hope 2023 is straightforward and kind to all of us.

xxx

Did anyone's here have radiotherapy at the QE Birmingham?

dotty2 where are you having your cancer treatment? I had mine at the Christie and they supplied the boots and mitts. I found I needed to change them every 30 minutes as when they warm up and start melting you need to change them. I found it best to load up on your strongest painkillers beforehand as it's unpleasant wearing them - but definitely worth it as I had no nerve damage at all. Good luck!

Well Ive been made aware of possibility of my balance issues being due to a brain metastatis, I know they are supposed to be rare with OC but its a known thing. I was worried enough before ! This is not a diagnosis just a comment from another sufferer. Of course its not possible to get a scan or anything just now. Im still hoping its just an ear thing. Wonderful

@thereisonlyoneofme I have heard they are extremely rare in OC but I can understand how worried you must be. Have you had a chemo review recently with your CA125 result? Thinking of you Xxx.

My New Years Resolution to start getting fit again didn't go well yesterday! DH set up my bike on the turbo and had mislaid a vital skewer. I clambered aboard but after two minutes the whole thing fell over sideways with me shrieking in terror. I slunk off and cried with shock!
Today I went out on my bike with my gang of lady cyclists and that went much better! It was freezing though and I am aching now. I must remember my tendency is to overdo things and try to hold back. I was very wobbly due to weak core muscles.
My friends were asking when I would have hair again. I wish I knew!
Happy New Year to everybody x