Cancer Support Thread 93 - The Thread for the Dread and the Not Yet Dead? Everything you need to know about Cancer but didn’t want to know

[LemonDrizzle10]

Shiny new thread.

@demivolte Oh that was nice of your airline and actually would prefer BA to offer this instead of trying to claim a refund back. I will speak to my nurse on Tuesday but I'm guessing I can't do anything until I have my treatment plan in place. I was going to wait till then before I cancelled my airbnb anyway. Thank you for the advice.

I was supposed to be in Amsterdam this weekend with friends but when I got my diagnosis/chemo plan I also sent my letter to the airline and my ticket is valid for a further 12 months.
Luckily another friend took over my abnb booking too. X

@catmomof3 there really are no words to ‘welcome’ you here but the support, knowledge and advise are amazing. Once you know exactly what you’re dealing with, treatment type etc you will be able to deal with it better. Yes always take someone with you and don’t be afraid to ask questions. No point in blaming yourself for not having a smear - they can never say for definite that it would have been caught any earlier. What’s done is done you have to move forward and do what needs done.

@SummerCycling recovery is going well so far, thank you. It hasn't been as painful as I expected and 4 year old DD doesn't seem to have noticed my missing boob yet, so haven't had to have that conversation. I'm told the pathology results should be available by the end of next week, but no guarantees.

@MothralovesGojira sorry to hear that you're not really any further forward. I was also wondering if your GP could refer you directly to oncology.

@Tilllly sorry to read your update, I hope you are getting on a bit better with the new antibiotics.

Just popping in to catch up and say I'm no better but the ABs aren't making me sick now

Got to church for 7 for the vigil of light service, then had a nap in Sunday school whilst bfast was made

Then had the weeps into the 10am service
Just couldn't pull myself together

Going for afternoon nap now

@Tilllly hope you had a good nap. I’m just going for one now. Dyed my hair, went to se mum, Tesco shop and had some of a tiger baton with very smelly Brie and then a whole Easter egg. Feeling very overfed so heading for a couple of hours myself!

Happy Easter everyone. I have surgery coming up for a hole in my eye. It never rains it pours. It co incides with all my cancer scans. I literally loathe going off work sick again. Ive only been back three months. My bloods showed a drop in vit D so I have to start taking that. Im not sure if I buy D or D3?

@EachandEveryone
Vit D3 is best
Its nearest to natural form you make and it's a smidge more active that vid D
So more bang for your buck

And... wtf do you mean, a hole in your eye?

Happy Easter everyone. I agree, vit d3 if you can

I think I'm getting a bit of lymphoedema in my wrists and ankles. V painful carpal tunnel last night. Any tips on keeping it to a minimum?

I've got dandelion tea. My DP (not English) thinks it's hilarious that dandelions used to be called piss-a-bed here!!

@TopOfTheCliff It certainly sounds like you got The Royal Cancer Treatment!

@Shityshitybangbang NHS letters make me feel very nervous too, I hate them. I'd prefer it all on the portal, but the NHS insists on doing it the old fashioned (expensive, anti-sustainable) way on paper and posted.

@catmomof3 Welcome to the thread. I'm sorry to read your news and also to hear that the treatment plan is likely to wreck your summer holiday plans. This will be my first summer since diagnosis in late spring 2022 that I'm not on cancer treatment so I completely understand how you feel about losing your summer holiday, it is really hard. Good luck with the plane tickets and brilliant idea about looking ahead to a wonderful summer next year.

Also, @catmomof3 I agree with @SierraSapphire and @Whatevershallidowithmylife that you shouldn't blame yourself for not doing a smear. Having cancer is not our fault.

@demivolte Good to hear your post surgery recovery is going well. Fingers crossed for histopathology. Keep us updated. It'll presumably be the deciding factor between more Phesgo or a switch to Kadcyla?

@Catunderling I have lymphoedema in my lower legs especially ankles too, mine's from my BP meds and because I have hypermobility and was once told that can cause it too. I find pressure socks extremely helpful, you might find either flight socks or stronger ones useful. Your GP might be willing to prescribe them; we're allowed 2 pairs every 6 months on the NHS. Your Dr could measure you for them - the hospital measured me and said size medium.

As for the wrists, maybe stroking with light pressure upwards from your knuckles, over the wrists up your arms? I'm thinking of MLD which I've been having for lymphoedema, although I don't have it in my wrists so am guessing how to do it there.

I was referred to the lymphoedema clinic, it could be worth asking about that at your hospital.

@Tillly I'm glad you made it to the vigil of light and the 10am service because I know the church means so much to you. Thinking of you. Hugs xxx

@catmomof3 I'm not convinced you will be too ill to go on holiday in July.

If it's standard treatment for Cervical Cancer then it's 5 week radiation, 5 Chemo and a weeks internal radiation (this is not as bad as it sounds) if you start treatment in say May then you'll be done mid June A holiday would be just what you need. I know you've not had scans etc but I'd hold fire cancelling it until you know what you're dealing with, unless of course your holiday is a week of adventure sports.

@JlL2013 My trip is the 1st week of July my body will likely be in full recovery mode and it's gonna be so hot and humid in Japan during that time it might be too much for me and the doctor was adamant I won't be going. I will hold off a while before I cancel anything though until I know what is what.

@catmomof3 definitely wait. I worked through treatment apart from the internal radiation week. Everyone reacts differently though.

Japan sounds amazing!

Hope all goes well with the scans and you can start treatment quickly.

@demivolte
Glad to hear that your recovery is progressing well. Hopefully your pathology etc will be good news for you.
@SummerCycling
Surprisingly, all the doctors and consultants at the Breast Clinic are female so you would think that they would know better but there you go.
Oncology have said that they will not under any circumstances see me prior to surgery or being discharged by the BC clinic to their 'care'. Not even to reassure or run through options. It is very definitely an attitude of 'our way or the highway'. I contacted the GP surgery on Thursday and they told me that they don't get involved and that they are not allowed to get involved so are unable to help. I'm not surprised as it's the exact same situation that we go through for youngest DC and their T1 diabetes care. As a juvenile patient they were seen every 3 months but since transferring to adult care 2 years ago they have not seen a diabetes doctor - not once. All the surgery does is do annual blood test, foot check, blood pressure & weight. If I need anything I have to phone the adult diabetes admin office and leave a message and at some point someone gets back to me - it may be an hour or 2 weeks or longer. We had a diabetic emergency at Christmas and it took them 8 hours to respond. There was a 12 hour wait for a paramedic or a 16 hour wait in A&E so I worked it out myself and did their job for them -literally. I really can not describe how bad it is here.
I'm find myself in a bit of a quandary about Charles & Kate but I do settle on the side of "well at least they're not taking up NHS resources".

Now the BC clinic has gone silent on me and not returned my messages about when I see a BC doctor again. I would put it down to it being bank holiday weekend but I've been messaging since Tuesday! I feel like I have been put on the naughty step.

The Macmillan nurse is calling me tomorrow to check up on how I am. But can someone explain what their role is because I blanked out tbh, all I remember her telling me is that I should also be prepared that I might die and then being in a complete mess because the doctor told me it was treatable and I'm not going to die. Is she supposed to tell you the worst case situation the second you find out? I just thought it was cruel when the doctor said the complete opposite.

Oh @catmomof3 they're there to provide support and information, to help access any benefits etc. I'm sorry they said that to you quite as bluntly as that, I never had any dealings with them myself as we have Maggies Centres here in Scotland. Go with what your consultant has said.

@EachandEveryone Sorry to hear about the hole in your eye. I hope surgery goes well. I might be wrong (terrible memory post chemo) but are you the person who's on Enhertu? If so, I hope it tolerable and effective xxx

@MothralovesGojira The teams at your hospitals seem to have forgotten that they are supposed to be looking after their patients, not bossing them around and ignoring their legitimate needs. What is your treatment plan as it stands right now?

@JlL2013 and @catmomof3 something I learned at the beginning of my cancer treatment was how completely different the treatment plans are for a cancer in the same part of the body. There are an enormous number of variables in cancer and if you take breast cancer for example, some people simply have a lump removed while others have years of chemo, immunetherapies, surgery and radiotherapy ( and I don't mean stage IV). I don't know anything about cervical cancer, but if it's anything like breast cancer, one patient's treatment plan may not resemble another's in pretty much any way.

@catmomof3 the MacMillan nurses vary massively in my experience and from what I've read on here. My first nurse was totally different to my next one. Neither knew anything about my subtype of breast cancer, but they each tried to support patients in their own completely different ways.

It was made clear to me from the start that I'd need lots of support and that the treatment plan was long and harsh. Without saying it, they made it clear my prognosis was not good. It was actually put into clear words by my oncologist almost a year into the treatment plan once they discovered my response to chemo was very good (they appeared surprised how good) and my prognosis had therefore improved. It seems to me that each nurse and Dr has their own way of communicating stuff like that to the patients, so I wonder whether it's something the NHS / hospitals don't quite focus on enough in cancer. It's such a big deal for us as the patients. In your position with this, I would listen more to the Consultant than the nurse. The nurse has not examined you and is not as highly trained. xxx

@SummerCycling for CC the treatment is pretty standard, depending on the stage.

Stage 1 is hysterectomy with possible follow up radiotherapy.

Stage 2/3 is chemo(Cisplatin) radiation and brachytherapy.

Not 100% on stage four.

However how people react to it varies massively.

@JlL2013 Have you got any tips for getting through the brachytherapy? I start mine tomorrow.
Thanks

@Yorkshiregold it's a long old day. It's not a scary as it sounds though.

I wasn't really prepared for how operation theatre it was for the preparation. I had a spinal and sedation and slept through this part.

They take you for an MRI so they can see if all the rods are placed correctly along the way.

You have to lie down a long time and can't sit up, I'd try to take a very long phone charger and a good book as it's very boring.

The radiation part itself is only about 10 mins. The feeling when they remove it is weird but not painful

Process was totally pain free but it was quite daunting and a bit overwhelming.

Was absolutely shattered afterwards.

Really hope it goes well for you xx

Thanks @JlL2013. I’m in for 3 days as they’re doing 4 treatments over that time and the plan is for a spinal.
I have various bits of entertainment to take in with me.
It should be all done by Friday though.

@Yorkshiregold Great news you'll be done by Friday. Wishing you all the best x

Thank you @SummerCycling I did think it was a bit cruel to say that to me especially as she was in the room when the doctor said I'm not going to die, even the doctor's nurses kept reassuring me that it's treatable and the doctor wouldn't lie and say it was if it's wasn't so when the Macmillan nurse is telling me to prepare for the worst esp after I told her I am autistic and have a hard time processing things I just thought it was insensitive. Already made me not like her much in all honesty.

I've been trying to remain positive the last day or two but it's bloody hard. Really hoping they call me this week with an appointment for the mri and ct scan.

I also spoke with BA who will hold my booking once I send them a medical certificate and after talking with my daughter we plan to rebook our holiday for next April or June (will decide when I get my plan) so that way I have something to focus on because I plan to beat this.

@SummerCycling
Right now there isn't a plan. There was the BC clinic's plan which was surgery and RT but I'm not having RT so now there is no plan currently. I've given them very good reasons for not having RT so they then said surgery and chemo. I want to know what the chemo options are....and that's how we reach an impasse because oncology will not engage and discuss options post surgery.
I know that I sound unreasonable but my last experience affected me & youngest DC really badly and that wasn't caused by the treatment itself. I already have long standing CPTSD and trust (or lack of it) relating to care/feeling out of control is a huge trigger. This why I have asked for details of what the chemo options are - I'm not asking for a definitive plan as all I want is an xyz possibilities list. I'm not only trying to protect my own MH but that of my DC's MH as even a xyz plan is better than saying I do not know in answer to their questions. On top of that I did everything they asked last time and they would say one thing and then someone else would then say no that's not right why do you think that's happening?
Bizarrely I haven't been discharged from oncology as far as I am aware although they never send out clinic reports in writing - they have an online system which doesn't work. It's a very large hospital ffs and the IT doesn't even work properly.

Anyway I have formulated a plan for next week. I'm going to go on my surgery's E-consult system tomorrow first thing (it reaches capacity at lunchtime & gets switched off 🙄). I am going to request copies all the test reports and hospital letters for 2022/2023 that have been sent to my GP. I had a thought in the middle of the night - if oncology haven't discharged me then technically I am still their patient right????? If I am still their patient then they should see me right?????

Have a nice Easter Monday everyone. DC and I spent the day at a zoo yesterday for their exam prep. It was a lovely sunny, warm day and we saw some fantastic stuff. The exercise was great too and I feel good today.

It might be worth finding out about the Macmillan nurse - is that a term you used, or was she introduced as that? I have a cancer nurse specialist but she’s not a Macmillan nurse. In some places, a Macmillan nurse is only for stage 4 patients, at others for all cancer patients, no matter the stage , or at other places they might not use that term at all.