Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

@loubieloo4 Mollymalone123 mentioned Udder cream, which is great, but that company do also have a specific scalp cream (Moogoo) which you could try if no joy from anything else. I hope the discomfort won't last too long - as you probably know, even the little things on chemo are horrendous

Hi I hope I am only here fleetingly! Being investigated for lymphoma. Symptoms are;
Sweatiness especially at night
Itchiness
Tiredness
Pain on drinking alcohol (who knew that was a symptom)
Pain in clavicle area.
Cough

I'm 30 (just) with no kids but we were trying. Bloods on Tuesday, chest x ray on Thursday, ct scan on Friday. Hopefully get the results soon after so I can stop worrying.

I can't tell anyone in real life because it's been a really tough few years health wise for us and I don't want 'oh bakewell not again' I'm a nurse and I'm very pragmatic. I know it's highly likely it's not going to be good but I need to hold on to that sliver of hope

That's an incredibly fast investigation. In Scotland everything takes months, so basically a death sentence.

@Nothapppy tbh the blood test was arranged 3 months ago before I felt like shit for a routine check up on blood levels during anti dependents, then I went to the gp on Thursday because I've been feeling really unwell for ages but I've had 3 telephone consults to prescribe pain killers and antibiotics. Then at that appointment she rang the hospital and booked the Chest x ray and had I not had the blood test booked in it would have been another 3 weeks but she just added all the extra stuff on top of the regular one.

I've been really lucky with how it played out. Sorry to hear Scotland is slower, covid is rolled out as an excuse for everything, I'm hoping they'll let me in to the xray department tbh as ive got a cough and she said don't come with a cough but there we go!

Been pondering this morning on the incessant worry and stress of a terminal diagnosis. then watched the tv about those poor people shot in Plymouth who were just going about their day. Puts things in perspective a bit for me.

I actually had similar symptoms 2 years ago, pre-Covid - it was a 7 week wait for a scan (the recommendation is to do it within 2 weeks of the GP's referral). It was a tiny bit faster this time. I don't know whether 2 years ago was the beginning of the problem - they didn't do a biopsy that time, and this time they have done one because there were other indications of cancer when they did the scan. No photo scan, because the room was booked up while I was there - so a wait of probably 2 weeks for the biopsy results.
Something I find weird in Scotland is that most times I've been to hospital for something, I've been the only patient in the waiting room. The hospitals feel like ghost towns. Yet there are massive waits for everything. This time there was a 5 minute interrogation from the nurse about Covid - because the online questionnaire about Covid wasn't working. She said that it doesn't usually work, so she has to ask the questions on arrival. All that nursing time lost just due to inefficiency.
I've decided not to google (yet), but I feel crap so am not at all optimistic. Just wish my youngest wasn't still at school. And I'm self-employed, so taking time off work will be very difficult.

On the question about terminal diagnoses, I have to admit that I've been feeling envious of people who drop dead with a heart attack. Of course it's awful for their families, but it's not a bad way to go, in my opinion.

Nothappy I'm with you on that and often think the same.

peridito that's good to know re: the weight gain. I was fed Intravenously for 5 days then it's just whatever I can manage which is supposed to be 4-6 small meals but I'm often still full so physically cant get it down. It seems most people have additional overnight feeds in the early weeks, although I'm glad not to have that. It's good to know the big bit is behind me. I feel a huge sense of relief after the op as was dreading the recovery but it's been fine, thankfully.

It was the cancer support websites that warned me about brutal chemo! most people had to stop early but we'll see. My oncologist has said it will be harder but they'll dose will reduce if I'm struggling.

MrsP I hope the chest is continuing to improve. Will they give you chemo before it's resolved and would you want to?

Acinoynx2 glad GCSE's went well. DD starts school in September and I'm desperate to be a part of it but not sure how possible that will be.

Welcome to the Newbies, sorry you find yourselves here.

Can I please ask how people are feeling about covid with all the rule changes? Having been fairly relaxed but sensible, I am actually more anxious than before. This is mostly around people not having to self isolate if they live with a positive case etc and having two DC's at school during my chemo. With bubbles I felt there was at least some preemption so action could be taken and I could keep my distance. I had covid last April and I'm double vaccinated but I don't think these things will help me should I catch it.

@quinin My chest is improving but so very very slowly. I am seeing my oncologist on Tuesday to assess it again before making a decision about chemo.

@Bakewellisntjustacake full sympathies, I too am being invesitaged for lymphoma.
I had my first appointment with the hospital 10 days ago, where the consultant did an immediate ultrasound and then took 4 biopsies, he also referred me for a contrast CT scan which I thought was just a CT scan but the letter I received a copy of had it noted as a staging CT so that freaked me out slightly.

I'm going back this Tuesday hopefully for results but I've had a letter confirming I've been referred to Haematology unit but they want additional blood tests, my first ones all showed within normal ranges except for a slightly elevated ESR rate.

The waiting around is horrible x

@PaddingtonStareBare isn't it just the worst? It's like I need to know what I'm facing because I know I can do it but I need support and if I tell people now and it's nothing then I'm attention seeking but if I don't tell anyone and it's the worst news then they'll ask why I didn't tell anyone

I wish you all the luck this week xxx

I have to wait for the result of the biopsy, before I'm even referred to cancer specialists, and then no doubt a massive wait until they consider my case and then for a CT scan. Meanwhile, I feel worse every day. My job at the moment involves spending all day every day entertaining other people. Hellish.
To be honest I feel like sorting out finances, etc. I'm a single parent, so it needs to be done. And if I feel this crap now...

Sorry to hear the MrsPut. Did they get to the bottom of why it happened?

I often have wound healing issues due to an autoimmune condition and find silver dressings really help. That and high doses of Vit C - 3000-5000mg per day.

Morning all. I’m back from a week of adventuring locally. Half by boat trying not to frighten or nauseate DH going up quiet creeks and stargazing then half by bike pedalling up steep hills and eating cake. I am aching all over after cycling 170 miles but very happy with my little holiday.
@quinin I am convinced we are all going to get Covid-19 now as it is rife in the population. I am still hiding away as I think Herceptin makes you CEV. I also test by LFT before I go to visit DM87. I don’t much want to be anywhere crowded or indoors so it is fine.
Regards to all and welcome to the newbies. This is a good place to be while fretting over tests and treatment.
Top

How are people being affected by the Covid rules? It seems that you can't get any treatment at all if you've been pinged, for instance? I had to declare that I hadn't had contact with anyone who had had Covid in the previous 2 months (?!). With a child at school, you're at risk of being excluded from medical and dental treatment at any time.
I see that you have concerns about this, quinin.

I agree @TopOfTheCliff I think in all likelihood we are bound to pick up covid if we haven't already unless you fully shield perhaps and I have never done that. I've been teaching some older teens online over the summer and many of them have it despite being vaccinated and/or having had it before. With dd16 about to go to 6th form I think I have to be sanguine about it.

We each will draw a line according to our health, situation and temperament. I wouldn't go to a pop concert or football match - but I did just go shopping and lunch with friends at the weekend despite having chemo today (actually I didn't even consider whether I should have done - it didn't even cross my mind until I heard another patient today talking about isolating )

I've never been asked that @Nothapppy and it strikes me as a very unrealistic question these days especially if you have kids.

I think, personally, from reading the literature, that the risks for cancer patients on chemo are clustered in certain higher risk subgroups (some specific cancers, co-morbidities, age, sex, i.e. male). I'm probably more at risk from BAME vulnerability.

I'm mainly concerned as said that my treatment would be interrupted but I think it varies a lot by hospital. I didn't think isolating would interrupt treatment - and I have seen some patients continue even after testing positive (e.g. someone on this thread last year I think continued with radiotherapy and just came in a separate entrance with precautions).

I have had problems healing from a recurring access @MrsPnut and @quinin and silver dressings didn't help but (and I realise this is going to sound nuts) I have had good results using a grated raw potato poultice (farmers use them - the juice has a chemical that destroys/blocks adhesion proteins on the bacterial membrane). DH has used it for infected splinters and similar.

Also I see that as of today you are not required to isolate if you have been in contact as long as you are fully vaccinated which seems very sensible.

They haven’t been able to do a lineogram so don’t know if my port has a leak. I don’t have an open wound thankfully but the skin is sore and swollen. I’ll try to add a photo without showing you all of my boobs.

@MrsPnut ouch! Do your team know about that?

@Bakewellisntjustacake They do indeed, I’m a private patient but have been into acute oncology a few times and had my consultant come and see me. It causes a bit of a stir amongst the junior doctors and nurses.
I’m seeing my oncologist tomorrow night and have seen plastics and a dermatologist too.

@MrsPnut - I see, yes a silver dressing is not going to help with that. Great it's not broken down, hope it stays that way. I would imagine chemo might change that? It looks angry and sore and I feel for you. Hope your appointment goes well today.

Do you take anything for immune support? I guess if you can't put stuff on it, you could put things in to support your body. I take beta glucans and have managed to avoid two hospital admissions when I've develop a temp by upping the dose. I also swear by medicinal mushrooms for their immune boosting properties. Im about to start growing my own lions mane but take turkey tail daily. If anyone takes anything else I would be keen to hear.

@Acinonyx2 - not nuts at all. Farmers used to use mouldy bread on wounds until penicillin was isolated. Lots of things that were alternative are now mainstream. I remind myself of this all the time when aligning my chakras 😄 I'm about to dive into the world of quantum healing and have been quite taken by it.

@TopOfTheCliff your trip sound amazing and I'm super impressed with your energy. I remember reading a while ago long distance cyclists were found to have immune systems of 20 year olds so this is now my aim, to get my malfunctioning immune system into tiptop shape and able to fight off those cells.

@Nothapppy I've not heard of this but it sound a bit bonkers. I'm dreading the DC's going back and losing the small bit of control I currently have over our exposure. I agree with Top that it's probably inevitable that we'll all catch it. Just bad luck to be CEV at this time.

@Quinin I am feeling so much better since my chakras have been getting the attention they obviously need. The only problem is that my class of yoga ladies who are all BC survivors are very sociable and hang out together. At the weekend they had a lunch party I didn't attend as I was cycling. Now one of them has Covid and the others are all getting tested. We had a class yesterday and at any minute I expect to hear the teacher has Covid. I try to keep well away from everybody and wear a mask and wash my hands but I don't want to be a hermit.
Maybe the cyclists stay fit by pedalling away from the crowds!
I am back to my usual weekly routine this week with keep fit and online meetings. I am starting my autumn tidying programme too. Actually to be honest its a perpetual decluttering but I have had a summer break from it. DH is out so I am loading up his van and heading for the recycling centre.
Regards to all. Stay safe and well! Healing vibes to @MrsPnut and @Acinonyx2
Top

Hello everyone
@Acinonyx2 I hope everything is going smoothly for you now?

@MrsPnut that looks f**king sore but hopefully you're going to avoid surgery there. I have my fingers and toes crossed for you

@TopOfTheCliff are you the Duracell bunny in disguise? Totally with you on the decluttering, I love a good throwing out session. My DH is a diabolical hoarder and buyer of assorted tat.

@quinin sounds like you are doing fantastically post op, long may it continue

I'm back in my black hole of doom. MRI scan of pelvis and abdo last Monday showed my pelvis was clear and no sign of disease. However somehow they caught the end of my chest cavity on the scan, saw something they didn't like and booked me for a CT chest the following Thursday. I don't see my consultant until the 25th. My CNS has said she can't and won't give me results over the phone. I'm literally going up the walls. Why do we have to wait so long for results? I could send my dog for CT and get results within 48hrs. It's bloody cruel.

Fingers crossed @Kitbot that it is nothing bad 🤞

I can now join you all on the thread that no one really wants to join. I had my diagnosis today and I find out treatment or next step next week when I see the consultants.

All my lymphnodes are affected it seems from my CT scan, I've been told it is treatable, what that means I don't know. Guess I'll find out next week.

😐

@PaddingtonStareBare Sorry you have to join us properly. It will be better once you have the treatment plan. Sounds hopeful though if they say it can be treated.

@quinn I've been taking Manuka Honey with my breakfast oats or in smoothies since I started chemo. It's ££ but I buy it from Holland & Barrett when it's on a deal. I have no way of knowing if it does any good but it's easy to take & I know of someone who used it topically to save their ear from amputation so that encouraged me to try it.

@Acinonyx2 Your potato application reminded me of using cabbage leaves on breasts for engorgement relief when the milk comes in. I wonder if there's any other veg we can use??

@KitBot They certainly should be able to give you the results more quickly. I've had private care via my partner's work and my consultant has rang me with my scan results the next day - which I am really grateful for. I'll advise you to distract yourself as much as possible but easier said than done I know.