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

Thanks for kind responses to my earlier message, I know I will feel more cheerful when I can eat properly again.

I am only at the very start of this horrible process and completely resonate with the dread of the phone ringing and the waiting. Always waiting, for a plan, results, appts etc. This last month each call or appt has brought more and more angst and bad news. However I had a lovely call from who will be my clinical nurse specialist on Thursday. I think she may become my new best pal. What a dfferent approach from the medical staff we have met so far who have been sadly lacking. My DH even commented on this and he is a mathematician with questionable social skills at times to give it context.
Just about to head for walk to the beach since you have all implanted that lovely idea in my head. Hope those who are feeling rubbish physically and mentally manage a little respite and @Bloodybridget I hope you manage to get a little nourishment into you. X

Hello all

Thank you for the new thread @MrsPnut

Quick intro: I'm 40, was diagnosed with oestrogen and progesterone positive, HER negative breast cancer in the summer of 2020. It had spread to several areas within the breast and to lymph nodes but PET scan was clear. My DC are 11 and 9. Had about 5 months of chemo (4 rounds of EC, 1 round of docetaxel then moved onto 9 weeks of paclitaxel after hospitalisation on the first round of docetaxel), recently had a mastectomy and targeted lymph node removal. Disappointingly there was still cancer in the 3 lymph nodes they removed and I've to go back in on Tuesday for another op, complete lymph node clearance this time. I'm already a bit worried about the results following that. At my original diagnosis there were 3 enlarged nodes on the scan, I don't want to hear that it was worse. Still, it will be what it is.

For headwear, I have a turban that I love from eadiechops.com/
They do kids' sizes too (got a matching one for my daughter which she loved!)
If you're handy with a sewing machine I found the design easy enough to follow and made my own too (plus matching tshirt!). I'm not allowed to knit following surgery, and am stuck confined to the house again whole awaiting the next surgery, so have been finding other crafty ways to occupy myself.

As others have said, I've found walking (and even jogging when I've been well enough) to be so so good for my mental health through all this so far.

@BitOfFun I would very much like to join you in the Cancervan! Perhaps we'll need to form a convoy. As a previous poster said, you'll not ever be abandoned here. Even having never met you, I feel I know you a bit, you're clearly brimming with bountiful amounts of kindness as well as humour, rare combo in my experience. Much love to you xx

Living where I do I can’t join in on the campervan escapade but I do have a house in Wales not far from the coast that I’d be happy for you all to stay in.

My dad wouldn’t blink an eyelid if I told him - if a convoy of woman turn up on your doorstep just give them the key to my house and tell the neighbours not to be scared.

@BadEyeBri I miss being at work, I miss having something purposeful and challenging to occupy my mind. I hope it doesn't sound too vain to say, but I miss being respected as an educated person. I am weary of the way many of the doctors presume that because I am ill, I am also stupid. As a vet, do you also find this? I am a mathematician but sometimes wonder what it must be like to have a medical background when you yourself are the patient.

@Alittlewornout I read on one of the forums on the Macmillan site that the cancer 'journey' is really just one long wait, as you wait for everything - appointments, tests, scans, results, letters, someone to put a cannula in...I am so pleased your CNS is so kind and nice.

@FizzyOrange I think I scare my clinical team. I ask all the awkward questions. I'm focused. I'm totally unemotional with them. I met my consultant for approximately 3.5mins and then the registrar was left with me. I could tell she was nervous. It didn't make for a fantastic meeting.
The pitch is wrong for me. I don't want sympathy and fluffiness. I want evidence based medicine.
My trial nurse is fabulous but she couldn't answer my questions either. So I'm a bit stuck.
Being a vet is who I am. It's not just my job. I actually cannot comprehend not doing it for 3-6 months. I just can't. I realise that sounds ridiculous.
As part of my job I bring death to relieve suffering. I maybe have more understanding of death than most people. My biggest fear is a bad death.
All of this is shit and unfair for all of us. I'm angry and I'm scared and I want to believe I will be cured but I just can't get rid of the niggling thought that this might be the end for me. Fuck that's depressing

@FizzyOrange I am/was a physicist & worked at one point on the physics side of a novel treatment for glioblastoma and solid organ cancers. I haven't worked for ages due to DC then MH but I find myself itching to ask all sort of questions to everyone I come into contact with for my treatment although it'd be irrelevant to my care. I don't because I'm sure it'd be insufferable!

@BadEyeBri You sound exactly how a brilliant vet should. If there's any justice in whatever kind of existence this is, you'll be around to help more animals.

Finally, I'll be in a vintage airstream in our convoy

I am finding it hard on the other side as I am a trained nurse. Not been on the wards for years and hsve worked primarily with children and parents. To be honest so far I have found communication by senior medical staff very poor. The first thing they do is draw attention my current health related profession then proceed to ignore it. We left Mondays bombshell consultation with no written info at all about my cancer or stem cell transplant ( granted we can read it all on the internet but not the point!!)
There was a poster in the waiting room stating 4 things you should expect from your consultation. When we got out of the room the first thing my DH said was well he clearly hasn't looked at that poster has he??
In contrast my youngish GP who really instigated this process phones me nearly weekly just to check in. Yes she may not have all the answers but she listens and will find out for me. Thats all I ask. The CNS I think is about my age and probably did her training around the same time as me and my pals, hence I think I feel more confident in her ability to support me.x

Hi all, hope I'm ok to post here. I found a lump under my arm a couple of months ago and finally went to get it checked out thinking the GP would say it was nothing but I ended up with a referral to the breast clinic. I went on Thursday and had a mammogram, ultrasound and biopsy and I get the results on Thursday afternoon by phone. I don't know why I wasn't expecting the various tests but I genuinely thought someone was going to tell me it was nothing to worry about and no one did. I'm not great at stuff like this, people keep telling me to just forget about it until Thursday but I can't it's in my head every second I'm awake and I'm terrified.

There's no real point to this, I just wanted to write it down to some people who may understand. I keep having times during the day where I feel like I can't breath so I have no idea how I will cope if it's bad news on Thursday.

Thanks for reading if you did ❤️

@JustDavesWife welcome to the thread no-one wants to join. Everyone will listen to you here. I was exactly the same, it was with me all the time, from the moment I woke up to when I finally went to sleep. Once you know what you are dealing with, honestly you will feel better and you will surprise yourself with what you can deal with. I was prescribed beta blockers for the anxiety I was experiencing and they don't stop the thoughts but take the edge of the physical symptoms.

@JustDavesWife we're happy to hold your hand til Thursday and beyond if needed x

Evening all. I am sulking today because after a week of lovely exercise I had an aching arm and the BCN told me off for doing too much and confined me to barracks again to rest for two weeks. Bah! I am a very bad patient. She says there may be nothing showing on the outside from radiotherapy but inside it is still inflamed. She is right but annoying.

@JustDavesWife welcome! First rule is NO GOOGLING! You will scare yourself. Keep to safe sites like NHS choices or Breast Care Now or Macmillan. It helps to keep busy. Tidy up, do some batch cooking, dig the garden or decorate. Anything to stop you dwelling on things. Don’t be afraid if they want to do more scans. Knowledge is Power! It helps them plan your treatment. We will all have fingers crossed for you but whatever the results it will be okay. There is no right way to deal with this. Rant or cry or hide away or pretend nothings happening.

@BitOfFun I understand you feeling abandoned. I looked after a lovely man who was given a stage 4 diagnosis so he set off and walked the South West coast path. Almost like The Salt Path story.
I won’t be on the CancerVan because I will be out at sea on my boat as soon as lockdown eases. I bought her in a fit of defiance last summer and have only seen her once since! We all need an escape plan.I am off to hunt for puffins once things improve.
Sending best wishes to all.
Top

PS @HumphreysCorner your parcel is ready for despatch

I am definitely up for a trip in BitofFun's Cancervan! I'm not surprised you feel abandoned - it must be very strange to go through the months and months of medication to just suddenly have nothing. You definitely need to say fuck it and hit the road.

BloodyBridget I am so sorry if my earlier comments about food were insensitive. I am obsessed about the fact that I am constantly eating but I do appreciate how miserable and worrying it must be to be unable to face food at all. I hope you feel up to it soon.

I have opted to go for another PICC line fitting and have been told that it will happen sometime on Thursday, but they won't be able to tell me when exactly until Wednesday. I am getting a bit fed up with the assumption that nothing else happens in my life, and I am just sitting around waiting to be summoned for the next bit of treatment. Like others have said, I really miss my job and I am feeling a bit like I am disappearing - I don't want to be defined by this stupid disease.

A friend has sent me a copy of a book called The Cancer Whisperer which I have just started, which I think deals with this issue, among others. Has anyone read it?

Hi everyone, I’m currently in remission from germ cell cancer. I had one round of carboplatin and Etoposide and four rounds of Bleomycin, Etoposide and Cisplatin chemotherapies. Then a sternotomy and full resection.

I still have crippling neuropathy well over a year after finishing chemo. I take gabapentin and duloxetine and have had a spinal cord stimulator fitted but I’m in such unremitting pain with the pins and needles and paraesthesia in my arms and legs I’ve got to the stage where my life has no quality and I want my limbs amputating. Nobody warned me that Cisplatin could do this.

Please, please does anyone have advice. I’ve young children to care for and I’m virtually paralysed and just touching something sends electric shock sensations through my hands.

Thank you. Take care.

@Summerdayshaze what a horrible situation - you have been spectacularly unlucky there. Pain management is not my particular expertise but I happen to be familiar with the regime you have been prescribed as these are common psychiatric drugs that I know also treat neuropathic pain. So that made me think of other psychiatric interventions that treat neuropathic pain such as deep brain stimulation, e.g.:

www.ouh.nhs.uk/patient-guide/leaflets/files/101230dbschronic.pdf

and there is also transcranial magnetic stimulation. These are both relatively new techniques and may hard to access but in your situation definitely worth investigating.

@Summerdayshaze That is really shit. I just wondered if you've seen a website called Stuff That Works? It's for all different conditions & people post if anything's worked for them in a community effort to find solutions. Also cannabis/THC? Appreciate you don't want to be stoned looking after kids though.

@Summerdayshaze sorry I don't have any relevant knowledge or experience but wanted to send sympathy.

@Bloodybridget I hear you re facing (or not) future treatment/uncertainty. Im sure the best advice is to take it one step at a time but I've yet to sustainably master this myself. Hope the food situation improves very soon xx

@Summerdayshaze That sounds really tough, I know from a cervical cancer forum I’m on that other people have had the same problem after having cisplatin. Some of them have got relief after taking alpha lipoic acid.

@AlbertCampion I have a lot of appointments for a day where they will ring me the day before to inform me of the time. In the beginning, I was so grateful that I was finally being treated that I honestly didn't mind but as the months have gone on, I have become crabbier and scratchier and now I really do mind. How on earth do you manage to organise childcare with that little notice? The presumption is that you have an army of people just waiting to assist. At my last two chemos, they have asked me if I would mind returning the following day for the second half hour drug as it is 'getting late'. These have been the same appointments where I have already waited 3 hours for a cannula to be put in so it is hardly any wonder why they are running late . In my old life, I would have come back on any day they suggested, but now I feel that is another day sucked away, so now I politely explain that it costs me £60 for a round trip to the hospital and I can't afford a second trip as I am currently not working. Would you believe that on both occasions, it has then been possible?

fizzy I feel your pain. I'm just about to begin treatment but both my NHS appointments so far have been 30-60 mins late. It's terrible. Clinical staff running around like headless chickens trying to do 3 jobs. It's all so inefficient. I know I could send my practice manager into that department for 6 months and she'd have it running like a dream. My little practice of 2 vets manages to treat 250 patients a week. Mostly within 15mins of them coming in the door. My chemo patients come in and go home at their appointed times. My surgical patients get the same service.
This isn't a bash at the NHS. It's a bash at how badly government runs it.

@BadEyeBri thank you for that, it is reassuring to hear it from an expert's perspective. I feel I am constantly moaning and worry that anyone I tell IRL is thinking, 'oh, but they are so busy', or, 'nurses do really long shifts' and that I should be grateful for any treatment coming my way.

@FizzyOrange I feel exactly the same way here in Canada (and similarly guilty for complaining, as I realize how overrun the staff often are) - I’ve actually found it slightly dehumanizing at times, being summoned at the last minute for a midnight MRI or told a day before chemo that I’ll have to go to a different clinic for one of the drugs right after having the rest. It’s as if the moment you get your diagnosis you step into this giant medical machine and kind of give up all autonomy. I understand why it’s necessary, but it can also feel infantilizing and very annoying!

@FizzyOrange lol at expert
We all pay in to the system. We all deserve gold standard care and service. When I am world queen, obvs just the small matter of my cancer to sort out first, I will put it all to rights.

@backformore sorry to hear it is the same in Canada, that is disappointing. I am just finding the whole 'being a cancer patient' a completely depressing and degrading experience. When I have tried to explain to people IRL who have never had cancer, how degrading I find it, they automatically presume it is because I have a gynaecological cancer. That truly isn't a factor, I would feel the same if it were on my finger.

@BadEyeBri but you are! If you can offer a service that adheres to appointment times in a practice with two vets, surely it would be possible to do a better job in a big hospital department .

Morning everyone. Sorry to hear of peoples less than stellar hospital experiences. Hugs to those facing decisions, trying to deal with long term side effects of treatment or waiting for results etc.
I did not have a good weekend, black thoughts, poor sleep, dreading today as sure they would say you need to come in for intensive chemo for a month, with no visitors etc. I will face this and probably longer when it cones to the transplant but the thought of doing it twice was getting to me.
However call from consultant today, I can have it as an outpatient and it doesnt need to be intense, I am under no ollusions that it will still be unpleasant. So although the situation is still pants, I get to be at home in my shiny new pants I bought last week!! ( Actually on second thoughts may put them away in the suitcase for the transplant and stick with the old faithfuls!)
I am fortunate that I live literally 5 mins away from the hospital so the daily trip for this injection isn't far.
Funny how in the space of a week or 2 what lifts your mood shifts. Never thought chemo as an outpatient would do it!! Hugs to all you wonderful ladies on this thread, its international Women's day, you are all incredible!