Cancer Support Thread 92 - Christmas Happy Hour at the Patience Inn 7pm tonight 🎄

[LemonDrizzle10]

Old thread nearly full!

@Tilllly good to hear from you. You know you need to channel your invisible army of supporters. We take no shit on this thread. The latest doctor hasn’t explained why you had a fever. Low Vitamin D would not cause that. If that wasn’t your consultant then say you want to see them before you go home as you are unhappy with the contradictions. If it was then you want a second opinion. Don’t let them boot you out on amoxicillin and more morphine and no diagnosis.

@SewingBees you will love Kinlochbervie it is a gem! I went there on my way down from the Orkneys to the Hebrides. The entrance from the sea is magical. You turn from the rough seas outside into Loch Inchard and head up the loch with no sign anywhere of civilisation. You round a corner up a narrow rocky channel and there is the prettiest little fishing village snuggled in a valley sheltered from the weather. There is a fabulous child friendly cake shop on the quayside too. Definitely recommended. Well done with the walking too. How far is it? I’m up to 500 yards now on crutches and feeling good.

@PissOffCancer sending calm vibes and wishing all good luck for the op. My DH is the same, he is an empath and feels so ill on my behalf 😂 At least he cares a lot.

We are calm here, waiting for the Coroner to pronounce his verdict on MIL. Hopefully “ old age” or “ heart attack” or something similarly bland so we can get going with arrangements. It feels a bit like lockdown 1 just lurking at home seeing nobody ( actually I have had loads of visitors but none for three days).

Happy Tuesday everybody

@TopOfTheCliff Thanks for the info, I picked the place because it had a dog friendly hotel with family rooms at a decent price, and i wanted to revisit the Far North once again. Good to know it comes with recommendations! My husband and I met on a solstice camping trip not so far from there, and my first visit to Sutherland was as a student in 1993 to visit an outcrop of the Moine Thrust (geologists will understand). I'm looking forward to going back, I won't be doing any hill walking but I will enjoy the scenery and seeing the dogs go mad on the beaches.

I'm rubbish at estimating distances but my husband says it's about 500m return to the school and includes a steep bit of hill. I'm happy with progress but can't walk without poles, the pressure on my lumbar is too great. If you're managing that far on crutches already then you're doing great!

Thanks @TopOfTheCliff , that's a good summary for me

Tho I've had another IV of tazocin, and now oral amoxicillin

@BreakfastClub80 I forgot to mention your insomnia. On Paclitaxel I had awful bone pain so took all the meds. Codeine paracetamol and antihistamines helped me sleep. I also had amitryptiline and gabapentin as I am a woose (sp?) What could you add? OTC phenergan maybe? With paracetamol might help. If desperate ask your GP for a few zopiclone sleepers. They might take pity on you. Sounds like your are nearly through chemo now. Keep going!

@TopOfTheCliff @Tilllly His family have been through hell and back with cancer, too many early deaths and children diagnosed. He hates hospitals and so going there with me today meant he wasn’t at his best. Pre op done, so now home and having a cup of tea and all is calm again. Should have my op within a few weeks.
@SewingBees yes, central belt. Sun is out and nights are getting lighter for longer.

Then he's done really well and deserves a beer!

I'm on EC chemo. I am 14 days post first chemo. My resting heart rate has gone up.

At my pre op check they found I had long qt intervals and extra heart beats.

Do I need to be concerned about this? I feel okl and I'm still doing my regular 2 hour walk each day

@tothelefttotheleft I have a resting heart rate of 100-120 and my diastolic blood pressure is crazy high and am now in medication for that. I've had several ECGs and an echocardiogram. Saw consultant cardiologist a few weeks ago who was not concerned. All investigations were promoted by my oncology team so I suspect if your team is not concerned then it's probably ok?

@TwigTheWonderKid

I haven't told anyone yet. I have a pre chemo appointment on Friday and will mention it then.

Thankyou for your reply.

Presumably they will take your blood pressure and pulse before you get your chemo? In my case my nurse was concerned and then alerted the on call oncologist who saw my BP was on an upward trajectory and referred me to cardiology and asked me to see GP re blood pressure.

@TopOfTheCliff thanks for your advice, I do have some piriton which makes me drowsy when I have the chemo so I’ll try that again though I think it affects you more when it’s intravenous! I haven’t had the joint pains but have got peripheral neuropathy so my hands tingle all night when I’m awake. That doesn’t help either!

@tothelefttotheleft I had to see a cardiologist after my second round of EC as I was very breathless. As soon as I told the nurses they made me come in and it all got checked out. Definitely explain what’s happening, just in case. For me, they were looking for anaemia and/or clots but I’m not sure what else could present as a high heart rate or cause it.

@tothelefttotheleft my resting heart rate went from 65 to 90 on EC and I got breathless on the stairs but all the echo studies I had throughout Herceptin treatment were normal. It took about six months afterwards to recover with weight loss and cardiovascular training ( mainly cycling) There is some evidence that exercising on the day of chemotherapy is protective so I used to cycle in to the hospital then get a lift back. But I am a bit nuts!

@TopOfTheCliff

I feel the same as you about exercising. It keeps me sane.

I can see on my Apple Watch that my heart rate is higher than normal on the hills I do. I've been stopping if I feel I'm pushing myself too hard.

@BreakfastClub80 its the E part of the treatment that is cardio toxic. It can damage the heart muscle. You are allowed a lifetime total of 900 units of Epirubicin and an average course contains 360. I’ve had about 700 now and thankfully it hasn’t damaged me. It makes you breathless and can make the ankles swell as well as heart racing. But most people are fine if they don’t already have a weak heart.

@TopOfTheCliff I was a bit worried about the Epirubicin as we have a history of heart disease in the family though I’ve not had problems previously. Typically the scans found a few issues that I had never been aware of (including a slightly leaky heart valve) but I was given clearance to continue chemo. I have to have my heart checked every few years now to make sure it’s ok…. this cancer journey is very unforgiving, you could end up a nervous wreck with the number of other things you find out about yourself that you’d never have known!

I’m also a tad concerned about potential radiotherapy as the tumour is in my left breast, but I still have to decide between a mastectomy and a lumpectomy so possibly might avoid it. Had an MRI last week which will at least show whether a lumpectomy is possible (if tumour has shrunk enough). I’m very undecided and waiting for a bolt of lightning to strike and make it clear.

I hear you both on the exercise though I found it hard through the miserable weather over winter. I am walking the dogs again now and going to the gym for light sessions.

@Tilllly hope you’re feeling a bit better today and can get home soon, if not already.

I'm still in @BreakfastClub80

They're contacting the brain man at the other hosp trust to see if I can still have gamma knife tomorrow

Still chasing for CT report- tho I had CT on 26th and these symptoms are after that

Still think there's infection but where? Still no explanation for chest pain

Think clot has gone tho if it was there but no idea what they're basing that on

That must be so frustrating @Tilllly , not knowing what’s happening! And I bet the gamma knife isn’t at the same hospital?

Sending good vibes from our doggo’s this is the look they give when you leave the house without them.

@BreakfastClub80
Not even same town, let alone trust. It's at St James' in Leeds; I don't have treatment there but it's a fairly major cancer centre I think

"Mama... how could you leave us.... you monster... we're starving... abandoned... ringing RSPCA"
Whereas cats barely notice you're going / gone. Tho all hell breaks loose if you're late to feed them - they look evil then, quite scary

@Tilllly Have you heard back from brain man yet? And what are they basing the "there's an infection" statement on - blood results? I remember my CRP went rather wild in December and they were obsessed with that. I really, really hope that things improve rapidly. No fun being stuck in hospital.

Bloody AXA have decided that they aren't covering a dermatology appointment for my alopecia because it's "cosmetic only." And then they cheerfully informed me that they'd cover the cost of a wig if I end up losing all of my hair. WTF!
Talked to GP again, who said they could give me steroid cream, which has a 50% chance of helping, or I can just wait and see as most bald patches just fill in again within six months or so. No interest in investigating the causes - e.g. blood tests to check if my pituitary gland is misbehaving and causing this - even though pituitary/ endocrine issues are very common after the kind of surgery I've just had (x3). And no referral to NHS dermatology because we need to wait and see for a few months first.
This is frustrating. I know it's a very minor thing compared to the "big treatments" I've had, but it just feels like this shouldn't be so hard.

@KentishMama if you have a small oval bare patch but the rest of your hair is normal then it’s an odd condition called Alopecia areata which can be caused by stress or autoimmune problems. It regrows with often a white patch initially and is speeded up by steroids either injected or anointed onto the patch. Dermatology won’t do much other than offer the skin injection instead of ointment. It’s a small thing but still really upsetting for you. It’s highly unusual it is anything sinister.

It's not a minor thing at all @KentishMama
I'd want to be doing something immediately, not waiting to see

Bloods and temp at 38°+
But the ward sister has been to see me and has kicked some butt, so for the first time in 3 days, I'm moreorless pain free
Still going for gamma knife tomorrow- think doctors here wanted to keep me but they've said I need to have it tomorrow so ward sister has sorted that
Think the doctors are scared of her 🤣

Thank you, @TopOfTheCliff! Love having a qualified GP here, so incredibly helpful. I've got one large oval patch (around an inch in width), and a smaller one in another place. My actual GP was very dismissive of steroid cream, and said that I should give it a few weeks at least to see if it's spreading (Gulp!) or filling in. It just felt very hand-wavy to me, but I guess I'll wait a bit. I have a scheduled appointment with another GP in just over two weeks, might bring it up again then...

@Tilllly A good ward sister is worth so much. I experienced both a horrid one and an amazing one last month - the horrid one was just rude and dismissive to her team, and you could tell they didn't want to work with her. That entire ward was dysfunctional. The other one, though, had the consultants on speed dial and knew how to get things moving, while jumping in every time one of her team needed help. So good. The opposite sides of the coin - DH thought someone should write a book about leadership skills with those two as the main examples.

She was great @KentishMama
I went from, what the fuck is going on, shall I discharge myself? To, everything is sorted I can go back to sleep

Then a nice surprise - a decent coffee. One of the catering staff is a lady from church and she brought me a lovely decaf, just how I like it. Was so nice to see a familiar face!

Has anyone else read the "I'm scared" thread?

Ooh @Tilllly that coffee would have made my day. I used to get my SIL to sneak me in decent coffee when she was working at the hospital.

I have had a good day. Three fun visitors who brought cake and flowers. One nurse visit to admire my beautifully healed wounds. To celebrate I contacted a local indoor bike hire place and he got back to me with a discount and a social media deal as he knows DH. I’m going to practise my pout and get some low cut vests to wear. I’m gonna be an influencer 😂