Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh)

Hello! Just popping in to pass on a quick warning. I was invited for the Covid vaccine by my GP on Monday, and booked in for yesterday. I had checked the Macmillan site which said I should be fine to have it, and I had asked the nurses in my oncology unit but they had pleaded ignorance and referred me to Macmillan.

So, anyway, today I had flu-like symptoms (to be expected) and my temp rose to 38.8. Called unit and had to go in. I'm not neutropenic and they think it is just a bad reaction to the vaccine, which I apparently should not have had at this point in my cycle. I asked how I was supposed to know this when no-one on the unit had given me any info and yet they must know that pretty much all their patients are CEV so will be getting the vaccine now. They just shrugged, basically - they said it is early days and they don't have protocols for this stuff.

I am now home, dosed up with cocodamol and ready to go to sleep, but just wanted to let you guys know that it is worth pushing your oncologist for a definite go-ahead before getting the vaccine.

@AlbertCampion what do they mean by this point in your cycle - which point is that? I booked mine for beginning 2nd week of cycle at a centre - GP just rang for this Sat but I'm usually ill next few days so I said I'd stick with the later date when I'll feel better.

@AlbertCampion that sounds awful I hope you start to feel better soon.
@ Acinonyx2 Mine is 7 and not independent with it although I think he can do more than he wants me to know! If l walked away so would he . Part of me thinks 'sod it it's not my education' but I still find myself drawn in😬

@Acinonyx2 I had it on day 12 and should apparently have waited til day 14. I had had all my filgrastim injections and was feeling great - the best I have felt since I started - but apparently i should have waited.

@AlbertCampion well I'm also booked for day 12 and I'm not changing it now. No hope of getting any further input on this either I'm sure (not much communication generally). I'm not convinced that the 2 extra days would make much difference if like me, you respond well to the injections. Lot of 'normal' people are getting up to 48 hours flu symptoms after the jab so hopefully it will pass - sorry it's made you feel poorly. Which one did you have? The one thing that puts me off is having anything else make me feel ill but I guess it has to be done.

@Lizdeflores Oh 7 that is a tough age for homeschool! I guess I'd be just hoping to keep maths and literacy going and otherwise just survive by any means! Dd couldn't occupy herself for 5 mins at that age. As it is she has pretty much a free pass on screen time.

@Acinonyx2 Yeah, I do think it is crazy that they don't give us this info - we're not psychic! Like you say, the reaction was completely expected, but obviously because we are vulnerable they can't ignore it when temps go up. I did feel like I was getting told off though, which was annoying!

Feeling much better today - temp gone down and nurse just phoned to say that my bloods show only a very slightly raised infection marker, which is probably due to jab, so I am fine. Good luck with yours!

Ladies can I join this very supportive thread whilst I wait for results?? I have an issue with my red cells and had a bone marrow biopsy taken today. I have to say the doc was amazing and it was not as bad as I was expecting. A trip to the dentist is worse.
I have 2 weeks to wait now, so am going to try and live in denial a bit and just do things I enjoy.
I am in awe of all you ladies are going through and not sure I will be as brave or strong but I will try.
If this is not ok to post here because I dont yet have a diagnosis, please just remove.
Reading this thread has helped me enormously to not feel alone so thank you.

@Alittlewornout Welcome, pull up a chair and have a rest. This thread is for all stages of the journey and the waiting is the very worst bit.

Thank you @MrsPnut for the welcome and the rest. You ladies are so incredibly supportive I just felt it is the right place to be for me just now, floundering a bit in no mans land.x

@Alittlewornout You don't have to be brave or strong here in fact it's best your not because that's bloody exhausting. Venting crying ,questioning its all welcome here ,as are you .

@Alittlewornout welcome to the thread no-one wants to join but also the nicest ladies on MN are here. Are you being investigated for polycythaemia vera? I have secondary polycythaemia due to OC, my ovary is making my bone marrow make too many red blood cells. For me it was a DVT and then subsequent blood tests that revealed the polycythaemia that lead to a CT scan that revealed a growth on my ovary. Have you been tested for the JAK2 mutation or have you had other investigations? I'm pleased your biopsy wasn't too awful, I get terribly worried about any procedure. We're all here to hold your hand as long as you need us to xxx

Thank you all. You are making me feel better already. @FizzyOrange they are a bit vague about what they think it is and say there could be a number of things. I have a nurse background myself but have not googled as I did at first and was down a rabbit hole!! I have no doubt they have an idea. The lovely doc said I was a star patient and the sampkes came off very easy which he said is often a good sign. Of what I dont know but that little bit of positivity lifted me. My only symptom was anaemia it was picked up 2 weeks ago by my GP. She sent off all the tests and since then I have been seen by the haematologist and had the bone marrow. What a wonderful service! Hit home to be taken to the cancer ward but hey ho I know that is likely what we are dealing with.
How are you coping with your condition??

@Alittlewornout Oh I see, if you have anaemia you have the opposite problem to me, apologies. When I read about your red blood cells and bone marrow I thought it was the same as me and as it is such a rare condition, was going to reassure you as such. It is good that you got seen so quickly, the waiting and worrying is the worst part. I had my CT scan at the end of September and it took until the beginning of December for a proper diagnosis and until the New Year to start any treatment. I know what you mean about the cancer ward being a shock to the system, for me it still feels as though it is happening to someone else. I am a terrible hypochondriac and have feared illness my whole life, so now to have the big C, it doesn't feel real. I am finding the chemo tough - it is exhausting and gives me severe bone and nerve pains in my legs.

Apart from the rule of not googling (much of the information is out of date and is always worst case) I would also say not to take too much notice of other people who always know someone who breezed through any treatment, however harrowing, with a permanent smile on their face and no side effects except perhaps a 'little tiredness'. I am finding my cancer experience really isolating, several friends have stopped checking on me, probably as I am not 'positive' enough for them and also I have had to distance myself from a couple of friends as our conversations are too upsetting for me as they make me feel like I am 'failing' as I am not the warrior woman they want me to be. I have realised the hard way that being positive is for other people's benefit, not ours. I received endless pep talks on the need to keep my chin up, stay strong and above all 'positive'. I think it is also because they miss the 'old me', the one who laughed and joked with them and now I am often feeling so rough, I am not longer like that. The part they overlook is that I miss the old me too and long for a bit of normality. This thread is full of lovely ladies who understand and listen without judgement, we can all relate to how others are feeling and support each other, oh and no-one is going to tell you to be more positive.

@FizzyOrange thank you for your frankness, I think I am apt to do that, put on a brave face as I am normally the comforter, being the person on the receiving end is new to me!!
At the minute I feel lucky, i have confided in a handful of close friends who have been fantastic. One lady herself has been through a cancer diagnosis and treatment ( very well 6years down the line). She sadly also lost her 20 year old son after a long battle 2 years ago. She lets me say it how it is. Another when I said I wanted to put together a box of letters for the children at various milestones in their lives didn't tell me not to be silly. She said thats fine leave them with her and she will take care of that if ever needed ( I am hoping it wont!!!!). I have started to keep a journal of my feelings as having the kids home from uni makes it hard. I have told them a little, as yet there is very little to tell so no point in a complete upset yet. I am trying to be honest without them spiralling down the wrong or even right road. Anyway thanks again. I do so hope your treatment is successful and that when lockdown eases you are able to enjoy simple pleasures.x

@Alittlewornout you're more than welcome, and thank you for your kind words. It sounds as though you have some great friends around you - having someone you are close to who has lived through treatment is someone who will understand first hand what you are going through, so sad about her son though, that is no age. I think with all this you have to do what you feel is right at the time. For the first few weeks after my diagnosis I was planning the music for my funeral and also looking through my photos wondering which one would look best on the funeral 'booklet'! We have to deal with everything in the best way that we can.

Hey lovelies

@Alittlewornout a very warm welcome to our lovely group. I too found the waiting far worse than the actual diagnosis. Stay strong and positive.

Cycle 2 day one tomorrow and after speaking to my oncologist nurse today I'm feeling a bit more positive as she said there are other meds to try if I'm suffering. DD1 buzz cut me today as my scalp was so sore after continued brushing of my hair. Now happily rocking the pirate 🏴‍☠️ look and both girls keep saying mum you look pretty. DS aged 11 can't look at me yet.

Me, but ignore the weight I've put on trying to stem the nausea.

Big wave 👋

I love your photo, Humphreys! Wonderfully pirate-like yet cute .

I got through Tuesday's CT and MRI scans, albeit feeling exhausted afterwards. I also developed an alarming eye droop with some kind of conjunctivitis; I looked like Columbo 🔍! I'm recovering now though, and can actually open my eye.

I had a fairly alarming phone-call from my Nurse Specialist today, asking me to attend the oncology clinic next Tuesday for a discussion of my scan results. "You know its spread more, right? You must be able to tell?" Errrrr, no? I told her not to say more, and she was all "No, no, not over the phone!"

So cheers for that.

Thank you @HumphreysCorner.
Wishing you all the best for tomorrow. I have to say I agree that you are rocking the pirate look! Your dds are right you are beautiful. Never mind if you have put on any weight at least you are eating. Today was my best eating day since the shock of all this reared its head 10 days ago.
Will be thinking of you tomorrow.

@HumphreysCorner you look amazing! Love love love your cap. Best of luck with cycle two.

@BitOfFun I am really shocked by that from your nurse specialist. What an irresponsible thing to say. I'm so sorry. Hope you can put it out of your mind til the appointment. x

Are there any prostate doctors here?
I need advice about when son should get a psa test.

@wheresmymillionaire lost of questions like that can be answered on the NHS choices website. Good luck

Thinking of you @HumphreysCorner hope it goes smoothly

@BitOfFun how alarming to have that hint of bad news hanging over you. I hope you can block it out over the weekend. Not what you needed.

I have been cheerfully overdoing the exercise and now ache all over. Today I cycled with DH to get cake from a town nearby and did 30k but was so exhausted I went to bed for the afternoon. I’ve started the SafeFit online sessions and am loving it. My new high tech scales have arrived. They send a message to my phone to tell me how fat I am
It going to be a very long haul back to fitness but I don’t mind putting the effort in. I feel lucky to have the chance.
Stay well people x

TopOfTheCliff

DH was diagnosed with prostrate cancer (gleeson 9) at age 43. I was wondering when ds should start getting checked.

@bitoffun I'm very shocked that your CNS said that over the phone, and also of course sorry that you probably have bad news coming. You've been rolling with the punches for so long. Hope you can find some distractions over the next few days, sending love

@alittlewornout hello and welcome, have no experience of your issue but I hope you get some answers soon, and that whatever might be amiss is very treatable.

@HumphreysCorner lovely photo! You do look very pretty! Actually I think it's interesting, most of the women I've seen who have lost their hair look great whether bald or sporting turbans.