Cancer Support thread #78 - Newbies welcome

[MrsPnut]

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

@Bloodybridget so pleased you feel much better and what a relief it must be to be through the final chemo. Nothing more has been said regarding the reasons for the delay to my surgery, I was rung at 5pm on Thursday and just feel so defeated with it all. Today has been spent organising a repeat prescription for blood thinning injections which should have been done whilst I was in inpatient this week . I can't imagine the bliss of a lovely walk and then getting to browse in a supermarket and actually see what you're going to buy! Really keeping my fingers crossed for your next scan.

I have bought a couple of ready made turbans from Amazon which I am pleased with. You just put them on like a hat. They were very cheap but thought they would be better than attempting to tie a scarf on properly after my surgery.

@Liz I remember us discussing our ESA payments and I have heard today that I have been put into the 'support group' which apparently is for us cancer patients and pays me a higher rate so I am pleased about that.

@Bloodybridget I am glad to hear you have got through the last chemo. You know we are all holding your hand while you wait for the scan and the result.
There is something a bit odd about the lull after treatment. It seems a bit like being caught up in surf on the beach and half drowned in the waves then spat out onto the sand. You think it is over then another wave comes and washes over you and soaks you again. But eventually the tide goes out and you have to get up off the sand and try to resume your walk. I keep thinking the last wave has passed and then another one sucks me in. I just want to sit quietly on the beach for a bit and recover. I am feeling better now, less joint pain although it comes in spasms that don’t seem to relate to what activity I am doing. I don’t trust it though. I don’t trust my body any more.
I am trying to tidy up my house as after four months with no visitors it has got a little out of hand. My DS is coming to see me next week and he is a neat freak so it will be a good reason to have a purge.
@Anne1958 it must be so hard to deal with the uncertainty of your situation. I think I would have to use a bit of wilful denial to cope. But I guess as time passes without incident you can be reassured.
@Acinonyx2 fingers crossed for your operation date.
@MrsPnut good luck and see you on the other side
Regards to all
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@Anne1958

Yes - definitely an appointment with your gynaeoncologist. Do you know if she's consulted any international experts in the field? Most of the material on-line seems to be quite out of date. 15 or so years ago. My oncologist told me that the future is in gene therapy rather than chemo and my gynaeonccologist at St Thomas' told me they had tested for one particular gene and I hadn't got it. I don't know if that referred to diagnosis or prognosis.

I'm so sorry you've had such a bad few days. I hope she can reassure you so that you can refocus on some positives. I'm only a Pollyanna about my own health. It's a different matter entirely when it comes to my dcs, even now they're grown up, so I do understand how easy it is to be overwhelmed by worst-case scenarios.

@MrsPnut wishing you all the best for tomorrow, I will be thinking of you xxx

Just need to vent here! I had my first Covid vaccination 14th Feb, wasn't given a card with vaccine details at the time, just told I'd get an appointment for the second dose within 11 weeks. I just went online to see when I could book one, nothing before early May and it said I'd missed or been able to attend my second appointment! I've never had any notification whatsoever, and I know reminders are sent out anyway, so where the hell is this coming from?

unable to attend
It's still within the 11 week thing but most people I know my age round here have already had or got much earlier date for second dose

@Bloodybridget is there someone you can speak to make your appointment. When my first one was booked I had a reminder text the day before with a phone number to ring if I couldn't attend. My second dose was due at 12 weeks on the 19th April but it was brought forward to the 12th because they rescheduled the whole clinic I then had to get it changed because that's the date of my surgery so they changed it to Monday this week. If you can speak to a real person it may help .

Yes exactly @KitchenFishCurry, I know it's nonsense that they're saying I had an appointment when I've had no communication about it whatsoever. I can't find any channel to complain about it although I did do the NHS vaccine booking survey and made a bitter comment - but I very much doubt any real person sees that.
I am going to call my GP practice to ask if they can do anything or shed any light on the "missed appointment" but I'm pretty sure the receptionist will say they don't have any means of booking second doses, that's what I was told when I rang a couple of weeks ago.

The booking of second vaccinations does seem a bit random. I was given mine straight away whilst still at the vaccination centre. My daughter had her first vaccination last week, she works in school and all the teachers were on a stand by list. She was told to wait a couple of days for the information get on the system and then book online which she has done.

Well I have calmed down, spoke to v nice helpful receptionist at surgery who confirmed no second appointment was booked, and has answered various other questions. I still might get a message from the vaccination centre where I had the first dose, offering an earlier date, but if not no big deal. It will be on my birthday!

Well Im now 12 days post surgery and feeling pretty OK. I actually had a phonecall from the hospital yesterday to see how I was doing, the only contact Ive had at all with anybody re aftercare!
My dog came back to me on Monday and its so lovely to have her back,
Shes a bit put out I think as she has been staying on a smallhold ng with lots of acres and things to see and do all day, now shes stuck at home with me with a tiny garden and a couple of walks , got dog walkers in.
She did however relent enough to sleep on my bed.
Hope everyone had a nice Easter.

That's great you have your dog back and are feeling OK, @thereisonlyoneofme! How long have you had her, since a puppy?

Can I join? I need the support.

Last week I was told I have cervical cancer at level 1A2 or 1B1 (the cells were on the edge of the biopsy of the cervix taken when I had a cone biopsy and hysteroscopy).

I have an MRI and CT scan scheduled for Monday 12th and I am petrified they are going to find more.

The initial prognosis is that it has been found early and I will have a hysterectomy but I veer from being positive and calm to planning my funeral and feeling on the edge of a panic attack. Please help.

Bloodybridget No she is an ex puppy farm breeding bitch, got her 2 years ago from a rescue. She only has about 6 teeth left !

@AnotherFight welcome to the nicest thread on MN with the kindest ladies. We all understand how you're feeling, this part you're in now is the worst, all the tests and the waiting are horrible. Once you know exactly what you're dealing with and have a treatment plan in place, you will feel so much better, honestly. When I was at your place on the timeline (I have stage 3 Ovarian cancer) I would look through the photos on my phone to see which one I thought would look best on my funeral 'booklet' and worked out the music I would like played, all the time feeling wildly out of control. You'll get loads of support here.

Hello @AnotherFight and welcome to this lovely thread none of us wanted to join. You will be in a state of shock so be kind to yourself. We will all say to you DONT GOOGLE because it just frightens you with out of date information. Stick to info from your team and NHS choices and Macmillan. The scans are scary to contemplate but they are just gathering information to help make a plan for you. Remember Knowledge is Power and once you have all the results and a treatment plan you will feel lots better. Try to keep busy and turn out cupboards or something. Have you tried the Calm app or a mindfulness programme?
Don’t hold back from downloading. We all know how it feels!
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@AnotherFight hi, I'm cervical too but stage 2 so not surgical. The waiting was the worst. If you want info then stick to NHS, MacMillian and Cancer Research. You can also try the Jo's Trust website.
I started my chemorads last week. I'm just in the chemo ward right now having my treatment.

It's a crap situation but it's treatable and my oncologist is treating me with curative intent.
Please do feel free to PM me if you want. I've had great support from this thread and I'm more than happy to lend a shoulder to cry on or a hand to hold

@FizzyOrange and @TopOfTheCliff, thank you so much for your kind words. Yes, it is the waiting that is so awful and allows the mind to run wild. It is already almost a week since I was told and the consultant did say that once I have had the MRI and CT that things will move very quickly. x. I will look at those apps too @TopOfTheCliff, thank you.

DH isn't being terribly supportive. What can I say to him (without sounding too hysterical) to make him understand what I am going through? I think he is on the spectrum (both our children have ASD) and it makes him very matter of fact and he doesn't deal well with emotional conversations. I'm too scared to talk about it too much as I will start sobbing.

Thank you @BadEyeBri, I may just PM you. I am off to the post office to take my mind off things. I hope your treatment is going well, thank you so much for taking the time to post from hospital x

@AnotherFight Welcome. Your dh sounds rather like mine! It has taken time but he is more understanding now - although not like 'us' I find definite information about concrete concerns helps him to connect.

@Bloodybridget I'd like to get my second jab brought forward to before surgery but doesn't seem possible. I also got a 'missed appt' alert when I originally booked - I think it's a common thing for some reason.

@Bloodybridget - yay for helpful receptionists- it makes such a difference speaking to someone who sounds competent.

@MrsPnut hope your op went ok. I meant to say congratulations on starting the the dilators- I have a real psychological block about using them but know I should get on with it.

My scans were clear ! So no idea what’s causing the pain, but at least it’s not a recurrence.

@Acinonyx2 do you have a date for your surgery yet? Mine is the 20th so I'm counting down (again )

@Toofaroutallmylife oh what a relief, so pleased for you!

@Toofaroutallmylife yay! That is good news

@FizzyOrange Glad to hear you have a date even though I know you won't be exactly looking forward to it!

No date for me yet and I am a bit fed up about that as it means it's definitely running late. I will see the surgeon Friday so will hopefully hear then - or refuse to leave without a date!!

@Acinonyx2 oh that's interesting that you got the same message about having missed an appointment. Makes me feel less apoplectic about it!
@Toofaroutallmylife great re clear scan!
@FizzyOrange glad you have another date, hope no more delays!
@AnotherFight hello and welcome, I am so sorry you are having to deal with this. We'll be right here for you, whatever is ahead.

I had my second AZ this afternoon - brought forward three weeks as I had my ovary removal surgery rescheduled from end of March to end of April, 4 days after my original 2nd dose scheduling.

I raised the issue first with oncology/BCN to see if they had a spare when I was in last week for treatment. They were using Pfizer at the time with no known date for AZ. Called GP surgery who have a dedicated person arranging the vaccines in the area. Explained situation and she could see my record, just had to verify with the GP. Vaccination nurse at GP made it all happen and was so helpful. Originally they were going to slot me in next week, but they found a dose for today if I could get there within 40 mins, which was much better timing in terms of treatment cycle.

So far none of the fever, chills, and pain like the first dose so I am hoping it will only be some tiredness.