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)

Hi @FrankieDettol - sorry you find yourself here. I was diagnosed with vulval cancer 2 years (mine was a malignant melanoma, which is the rarer sort of a rare cancer). You really are at the hardest part - if it does turn out to be cancer, there will be a plan, and that seems more manageable.

I lurk on this thread, and happy to answer any questions if I can.

@ANightLikeThis
That’s good to hear regarding the Kadcyla, long may it continue!

Sorry I can’t help with the feet, that sounds really sore Mine are monumentally dry, along with everything else, from the Docetaxel but are being held together by Aveeno Dermexa cream. Hope someone can sort you out soon and you can get back to exercising.

@Toofaroutallmylife thank you. I'm sorry you have been through that and I hope you are in a better place 2 years down the line? Can I ask how your diagnosis went? I'm assuming I will need a biopsy? It is a totally flat but black and brown lesion I'm dealing with

@BadEyeBri I'm very sorry to hear about your diagnosis. Will the MDT meet soon? I hope so. You must be feeling a range of emotions. Not the same league but I remember the relief of my MS diagnosis. At least I knew what I was dealing with.

@TopOfTheCliff

Thank you. You are very right about not googling. I wore out the whole Internet when I was waiting for my MS diagnosis and some days I was horrified. Clearing out a cupboard sounds like good advice.

I hope you are well at the moment

@FrankieDettol No problem. The first time I saw the gynaecologist he said it was probably malignant melanoma, and then I had a biopsy to confirm the diagnosis. Then I had scans to check it hadn’t spread, followed by surgery.

I’m fine now - being monitored very closely, but not having any active treatment at the moment

Hello and welcome to @FrankieDettol, but sorry you find yourself here. As others have said, waiting for investigations and results is very hard. Hope whatever you have is very treatable.
Commiserations to @HumphreysCorner and @AlbertCampion re PICC line woes. What a bloody horrible palava.
Some of you might remember I've been wondering whether my stage, 2 at original diagnosis, has changed. I had a phone oncologist appointment this afternoon and asked; it's now "resected stage 4" i.e. the metastatic lung tumour was removed. It's what I'd guessed from looking on the CRUK website. But it does sound, er, serious.

@BadEyeBri welcome to the thread, the nicest on MN. Telling people has been one of the worst things about having cancer for me. My diagnosis was extremely protracted so I had plenty of time to prepare those close to me so that when it was confirmed they had all had a couple of months to start to come to terms with it. I have mentioned before that one thing that has truly saddened me about telling people is that I have had to distance myself from a couple of close friends who have become members of the 'positivity police'. Their relentless lectures on keeping my chin firmly up or otherwise face my inevitable demise has really hurt me.

@FrankieDettol welcome to you too, we will hold your hand as long as you need us to. The waiting is the worst bit, honestly I am the wimpiest person and the biggest hypochondriac I know, and yet have been surprised at what I can deal with. Once you know and there is a plan in place you will feel more in control, it is all the 'what ifs' that make the waiting the hardest part to contend with.

Top what is the FRAME trial? Is this for BC patients only? It is interesting what you say about lockdown and Covid. I have moaned repeatedly about my chemo symptoms to anyone who will listen and most reply with 'oh yes, and lockdown makes it all so much worse as you can't go out and socialise'. I feel like a a real misery saying, 'it doesn't affect me at all, I am nowhere near well enough to go out'

Hoping we hear from @InOtterNews very soon.

I had my third chemo today. Do others find their drugs are ready when they arrive? Mine does a pre assessment the day before and assured me yesterday that my drugs had been ordered and yet it was three hours after my appointment time before they even put a cannula in! There also seems to be some confusion as to my treatment plan. I am due to have a scan in a couple of weeks to assess whether I am suitable for surgery but was told today by a different consultant that operations such as mine have been postponed due to Covid so 'we' will press on with the chemo. I realise that the situation seems to change depending on whom I am talking to. All very worrying and frustrating.

Sending love to you all xxx

@Bloodybridget
In hospital now waiting to go to theatre with fetching doodles on each boob .
My request to have both breasts removed for symmetry was well received .
Yes we are out of lockdown so can have visitors but hope to be home tomorrow .
Sending everyone very best wishes .

Hi @FizzyOrange My drugs were always waiting for me on the day . Waiting 3 hours to be cannulated sounds like a failure in organisation.
I went through chemo without a picc line,but the cannulas became too painful and when I started the maintenance treatment I decided to have one fitted.
I have read that others have had awful experiences mine wasn't like that at all. I was waiting for the nurse to start when she told me that. she had finished.There was no trip to x Ray either as they had this piece of kit that they put on your chest which links up with what looked like a IPad allowing them to see exactly what they were doing. It took me some time to adjust to having a picc but I love being cannula free and not having the anxiety and dread of another cannulation.
It has been a eyeopener to me that hospitals don't all seem to have the same equipment and resources available to them which could make a difference to people during such a shit time.
I have found the time after treatment really difficult and have been struggling with, the what now? and why can't I be happy? my treatment was successful. I have found a really helpful book called The Cancer Misfit by Saskia Lightstar which I'm finding really helpful and recommend.
I hope everyone has an enjoyable day and symptoms and side effects are manageable xx

@FizzyOrange I also meant to say my op went ahead after 4 rounds of chemo the delay I experienced is because they wanted an ITU bed. Hopefully there won't be too much delay and waiting around.
Good luck Trumpton x

Morning

@Trumpton lots of hugs and strength for today.

@FrankieDettol welcome 🙏 Echo the others and try not to google.

My Apple Watch keeps telling me my resting heart rate is too high and it's making me panic. I'm putting it all down to my bloods being too low for chemo and the stress of yesterday. Will sit and do my jigsaw today and try and chill.

Have managed to book both Covid jabs and in my town at last. 😅

Big wave 👋

HC x

Good luck @Trumpton! I'm in hospital too this morning, having had my single mastectomy and lymph node stuff done yesterday - didn't get into theatre til 4pm so ended up staying the night. Waiting for meds and canula removal before hopefully getting home this morning. Still have my fetching doodle, it seems impervious to baby wipes!

@FizzyOrange yes, they usually have all my drugs ready for me when I arrive at chemo. It definitely sounds like you are a victim of poor organisation. Three hours for a cannula! I would have been climbing the walls!

@Lizdeflores I completely agree with what you say about PICCs in terms of how useful they are - and I really hope I haven't put anyone off them. It was a fluke that mine was blocked and had to be removed. I went in today to have a new one fitted and unfortunately after three attempts they have given up - so I think maybe I am just awkward! It was actually quite a traumatic morning and I feel very bruised by it all, but I am assured that I am unusual and most people (maybe me and HC excepted) are absolutely fine with fittings! I am gutted, as I would much rather a PICC than cannula for the rest of my treatment. I am really worried about the chemo affecting my veins.

Sending lots of love to those in hospital, those waiting for diagnoses and treatment plans, and those still caught up in the daily grind of it all. xx

@AlbertCampion oh no that sounds rubbish re PICC. Would you consider/be eligible for a port? (I thought they looked like the best option from the start but was persuaded to give canulas a go and then when it was clear that was no longer an option I only had 7 weeks left so a port fitting seemed a bit ott). Hope you are able to have a nice and restful afternoon after all that xx

Somebody mentioned nosebleeds? I had a continuous bloody nose on herceptin. Now I've switched to EC it's still a bit sore and bloody sometimes but a lot better. I've stopped the disgusting trail of bloody tissues.

I have a port - after my own cannula dramas (I don't have a power port - note to others - get a power port!) I had been wondered if maybe I should have had a PICC that can do anything. Now thinking maybe I'm Ok with my port. SOme places can't fit them - people come a long way to my hospital which fits PICCs every day but ports just once a week. This might be why some places tend not to recommend them.

@FizzyOrange My drugs are sometimes ready - sometime not. I sometimes wait up to an hour or more to get started but that's not always due to waiting for drugs - just busy. A nurse has to be free to sit an continuously inject the EC for example. There always seems to be some confusion about the drugs I'm taking home.

My oncologist had not heard the latest on the surgery and is still thinking mastectomy and total clearance. So I have another MRI booked and a final decision will be made after that. Just can't get enough of those MRIs

Good vibes to those in surgery this week - hope all goes smoothly, do keep us informed.

Zen vibes to all those waiting on test results - long days.

Chemo 6/7 next Monday. I'm getting increasingly tired and really looking forward to stopping. Being in the middle of the cycles is rather rubbish - even if you don't really feel better you do feel mentally better IYSWIM when you get past the half-way mark and see the finishing mark. The maintenance chemo should feel light in comparison.

@Bloodybridget at the risk of lightening striking me down for hypocrisy - don't get too wedded to the stages as they are something of a historical relic. I've just started counselling - hope yours is going well.

@AlbertCampion god I feel for you. I'm battered and bruised but at least it's fitted. Hoping it won't get infected like my biopsy did. They did mention to me about the IV team doing it if the 3rd attempt didn't work. Yesterday another lady didn't have much luck as the tube ended up in her neck.

@Lubballoo hope your recovery is speedy.

@Acinonyx2 it's me with the bloody nose full of snotty blood clots.

My drugs are always ready for me, just kept in their fridge.

Now seem to have got a chemo rash on my head and neck. It's a new joyful side effect every few days. Oh, the joys of chemo.

HC x

@HumphreysCorner my hospital has a specialist dept: vascular access that does all the PICCs and ports - and they will be doing my cannulas for scans in future. I wonder if this is like the 'IV' team - in which case get them on the case!

Thank you ladies, it would seem that my chemo unit is particularly disorganised, this has happened every time now .

@Lizdeflores I was talking with my new chemo friends in the unit yesterday about what life would be like after treatment. Prior to my diagnosis, I would have imagined I would just feel relieved to be finished and clear of treatment. I now find myself hoping I will be placed on a maintenance drug so I am not going to be just be cut loose. Then I think that I am overthinking this. I am really sorry to read that you are struggling with this time and are unable to feel happy. I find it hard to remember my life when it wasn't ruled with hospital appointments and feeling ill. I am going to look for the book you recommend on Amazon, thank you for that.

HC I also have a chemo rash today on my face. I was told on my first cycle this was a steroid rash and nothing to worry about. I stopped taking the steroids on day 3 but the rash persisted on and off for about a week. Last cycle, I only had the face rash on the evening of day 2 and this third cycle yesterday has brought the rash on overnight. I have the full tomato face and it is radiating heat. You can take piriton if this agrees with you but it didn't make any difference to me. I'm pleased the line is in and hope it is trouble free for you. I take beta blockers for anxiety which stop the racing heart and just take the edge of things. It is very frightening when you feel your heart thumping away like that, hope it has gone off for you now.

@Lubballoo hope you're home now and resting well.

So today I recieved my diagnosis of hodgkins lymphoma after months of battling to be seen and taken seriously. Strangely calm about it as I always knew this was going to be the only outcome.

Further tests to be done to determine subtype and stage and then all aboard the chemo wagon. I hope you don't mind me dropping by from time to time.

If anyone is going through similar and your gp dismisses you, I urge you to demand to be seen.

I've had symptoms for over a year and they flat out refused to see me!

Took a breakdown over the phone to secure an appointment and when I was finally seen the panic button was pushed and hear I am!

I have around 15 large nodes in my neck and the whole of my chest cavity active.... they symptoms are the worst st the mi but at least I'm finally being dealt with!

Sending love and hope to anyone on this shit rollercoaster that is cancer xxx

@Doyoumindifislytherin I'm so sorry about your diagnosis, and it's very bad that you had to wait so long for investigation. Please do spend as much time here as you want, it's a very friendly and supportive place. I hope you get more information about your condition, and a treatment plan, very soon.
@FizzyOrange I've had to wait a couple of hours for chemo drugs before now, but never three hours, that's silly! In my case it was because of a shortage of pharmacists, not inefficiency on the ward. Also how confusing re surgery! Do you think a nurse might have a clearer idea, if you phoned?
@Trumpton I hope you get home today, wishing you a good recovery.
Ditto to @Lubballoo, you were hoping to go home yesterday, right?
@HumphreysCorner how's your heart rate now?
@Acinonyx2 I guess you'll be glad when you know exactly what surgery you'll have. Have you got a date for the next scan?
Quite a few people mentioning actual or anticipated anxiety after treatment is over . . I'm expecting, assuming this round of chemo is successful, to be on a maintenance drug, but unfortunately it seems to have a lot of possible side effects which sound as bad as chemo! So as I would have been monitored every three months anyway, I'd rather not be taking anything. Obviously it's intended to delay recurrence so I will need it, but I had really hoped for time to just feel well. Possibly I'm being pessimistic and it will be tolerable.
Another grey day here, but daffodils are breaking out. Warm wishes to all x

Thank you for everyone who replied - sorry not to mention you all by name. Hard to keep up.
I've had 3 scans this week to prep for radiotherapy which I'm hoping will start next Thursday. Waiting for confirmation today.
Not sure what to expect from RT. The radiologist said I'd feel tired and possibly nauseous. Anything else I should be prepared for?
I've arranged for the kids to go in to school on those days. DH is a key worker so we can send them anyway but I kept them home to reduce the risk of Covid infection. So they are v excited at the thought of going in to school and seeing some of their friends. Which will distract them from my treatment and side effects. Win/win

@Bloodybridget so sorry about the stage 4. I know you suspected it was inevitable after the lung tumour but still a shock to have it confirmed. How has DP taken it?

I came on to see how @Trumpton got on having her mastectomy after all this time -must be 18 months after diagnosis. Hope you're recovering from the surgery.

Someone asked about after effects of taxol on nails. My nails all suffered in about week 8. It took about six months for all but one to be back to normal. Now 14 months after chemo my big toenail keeps growing back black and is a little loose. I am not going to bother GP about it, and it seems a bit trivial but I'd like to know if it will recover.

@Bloodybridget I am getting used to one consultant saying one thing whilst another says something else. I used to place great store in the last piece of information I had been given but I realise now that the consultant assigned to my care is probably the most reliable, but who knows. My CNS tends to go AWOL when I need her too, most frustrating. I am trying to organise an outpatient appointment for an ascitic drain and this is her area. I e-mailed this morning and had a nice prompt reply which pleased me a great deal until I realised it was a bounce back e-mail saying she was out of the office until next week. I was hoping you might know, is it usual to go onto a maintenance chemo after the initial round for OC? Liz is on it and now you mention you are expecting it too, I am wondering if this is routine. In my ignorance, I had imagined the maintenance would be a much gentler drug and would give me the reassurance I feel I need that I am still being treated. However, I really do understand what you mean about having some time to just feel well, I feel the same. The last time I felt fairly normal and well was last September which isn't that long compared to many of the ladies on here but it does get me down. It is the lack of energy and fatigue I constantly struggle with most. Do you know what the expected side effects are with the maintenance drugs for OC?

@SerenaTuccot I am pleased your children are looking forward to school and it will mean the focus is a little on something else. They will be excited to tell you about their day which will be a bit of a distraction for everyone. It must be so hard for you though, holding it all together when you have such young children, I am thinking of you. I often feel fortunate that DD25 is an adult with me dealing with, I often think how much more difficult it would have been say 10 years ago.

I had good news yesterday that my application for ESA has been approved and they have back dated my claim to my diagnosis date last December, so thank you to all the ladies on the previous thread for the information on this. I have been awarded £74 a week. For those not aware, it is a benefit which cancer patients can claim if they are unable to work and under pension age and isn't dependant on the usual benefit criteria of savings etc.. It is linked with having paid NI contributions for the last three years and is completely separate from Universal Credit. It is a 10 minute online application, then sending in a sick note from the GP and then a form which for us cancer patients is mostly irrelevant so only basic name, address, NI number etc. and details of GP and oncologist, then finally getting it signed by the GP or CNS. One of the nurses at the chemo unit was happy to do this for me this week. I often have to take taxis to get to appointments and have been horrified at the amount I am spending on them - some weeks it is over £100, so what with not being able to work at the moment, this benefit will really help me.

Evening and welcome to all of the new members, sorry you have had to join us but it is a very safe place to vent and overshare.

I had number 2 of 3 brachytherapy today and it was painful but at least the machine worked first time. The top of my vagina is sore so the insertion and it being in place is what is causing the pain and discomfort.

I am so glad I was in and out today after the cock up on Wednesday with being sent for a mammogram but as my last one was only 3 months ago, I couldn't have it done and the doctor that was doing the ultrasound kept me waiting for 40 minutes so they could find my notes because the surgeon had written the wrong thing on the form. I did see the breast nurse in passing and said to her about it. Her response was that she didn't know that I'd had a mammogram before, I did point out that she was there when I'd said so at my first appointment and also how did she think I got a diagnosis.

Grrrrr and all that. - Oh and my car is playing up so I've had to book it into the dealership next week to be looked at.