Cancer support thread #74 - come in, we're here for you.

[Hippiechick162]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread iswww.mumsnet.com/Talk/general_health/3760336-Cancer-support-thread-73-come-in-were-here-for-you

Current members, please do introduce yourselves smile

Hello, I hope you don't mind me posting here? I have no diagnosis of anything, but have had an urgent referral to hematology after having a few weeks of funny symptoms (tired, achey, breathless, nosebleeds, weight loss and tummy feeling sore and full all the time). My basic blood tests were sus (everything low on the FBC basically) so I got referred for further blood tests and an abdominal ultrasound, which showed enlarged lymph nodes and spleen.

I have my appointment tomorrow + lymph node biopsy + bone marrow aspiration and I'm not at all sure what to expect. Obviously I know what kind of thing they are looking for, but I am trying not to speculate! It is good that I will soon know one way or the other. But I am a bit scared

Also..... if anyone happens to have ideas what you can do to relieve stomach ache caused by enlarged spleen, I would be very grateful to know! It is not feeling very comfy at all

Thank you and I hope you don't mind me gate crashing!

Cheers guys - details hazy but it's definitely at the higher end of bad, most cut out but some still left. Radio and chemo start in a few weeks but for now surgery has done the big part. Under the royal Marsden for an appointment next Tuesday to discuss results etc.

Oh and home with husband and 3 kids

I was given a prescription for tramadol from hospital so DH collected it this morning .
I took 100mg and oh boy was I sick ! Holding my poor boob together !
On a brighter note the consultant at hosp rang me and I went to see her .
She and colleague managed to unblock drain tube and fit new bottle then a gentle milking massage and suddenly pain free !
All dressings off while I was there . All 3 of us masked and two of us gowned .
Back next week and she will try to get the Herceptin done while I am there.

Welcome @iwillnevereatspaghetti things do feel better when there is a plan and you can do one step at a time rather than stumbling along in the Dark .

@jourdain11 that all sounds very scary for you .
My only experience is breast cancer but there are many different people affected by different cancers here , someone will be along soon .

@piggles39 that wait sounds hard . I was last but one to get anything but a straight forward mastectomy at Wythenshawe last week . The breast nurse rang me from there this morning to see how I was doing and she said it was the right decision to do a quicker op and get me out fast .

@Skap we are amazingly lucky here with our GPs . I can always get a phone consultation and nearly always an appointment the same day if needed.
They are also wonderful with 96yr old mil .

Best wishes to all . I am on my bed and drifting off so will nap for a while .

Hi everybody, I had my surgery on Tuesday, and have been very sore and in quite a lot of pain since. Have been religiously doing the physio 4 times a day (have set alarms on my phone!), and making sure I take my painkillers on time. Got wound clinic next week, as I have a pico dressing, which provides suction/pressure to the wound to get it to heal quicker. Keep getting tangled up with the tubing! Should get my pathology results in 2 weeks, and am hoping it hasn't spread to my lymph nodes. Will then be having radiotherapy, although I think it will be a modified protocol - instead of every day for 3 weeks, it will probably be triple doses over 1 week.

Take care everyone.

@Zorgothslugofdoom.

Oh well done on the exercises . I have been so sore and sorry for myself that I didn’t exercise yesterday but you have inspired me so I will do them now, in a minute , soon .
My Pico lasted 8 days . I now have no dressings on . Weird . It looks really healthy .
I have to take photos of it to show breast nurse . My camera roll is very strange !
Heal well .

Trumpton you too! Hope you recover soon! I've found that having the physio and painkillers set as alarms on my phone has helped - my chemo brain is hopeless, so unless there's an alarm or it's written down, I forget. It's very annoying!!

Hi - waving from haematology to jourdain - glad you came over to this thread. Welcome to the best club no one ever wants to join. I’m still hoping that you won’t need to be here for long.

I had a very mildly enlarged spleen, only discovered during tests at the time of diagnosis (palpation and, for other reasons, I also had a ‘neck to knees’ CT scan on which it also showed). It was causing a mild but noticeable discomfort, which went away as my treatment conquered my blood count (opposite of yours, dangerously high).

Check which OTC painkillers you’re allowed to take - I’m not allowed ibuprofen or aspirin, so it’s paracetamol or paracetamol/codeine only. I didn’t need strong pain relief after 1st bone marrow test. I should have asked for prescription strength paracetamol/codeine (or even stronger stuff) after the subsequent ones - they didn’t hurt more when being done but they do ache rather badly after. Given difficulties with pharmacies and random outages in OTC drugs from the shelves, it might be worth asking for prescribed strength.

What time is your appointment today?

Day 5 of 84 (minimum) here

I’ve been posting quite a lot on MN in recent days. Quite a lot of it about how impossible it is to secure online delivery slots, even when you have a ‘shield/exceptionally vulnerable’ letter

I’ve not tried to do it through the hub yet. I’m worried they might try to send me a food parcel, which I neither need it want! And the whole system is ‘yes/no’ answers, rather than having a chance to explain what you need.

As I have only one more delivery booked (and if they don’t deliver the tonic water I ordered in quite large supply so I can drink the Christmas gin lake) I might have to ask for help at that point

If any lovely lacies know any secrets of how to get a supermarket to acknowledge you as shield/vulnerable and actually let you books slots, please do let me know! (By PM, if you don’t want the whole world to know)

Hope everyone is doing ok, particularly those of you going through active treatment in these crazy times. It is a scary journey at any time without all the added covid stress. I saw my breast surgeon today for a follow up, I had a panic a couple of months ago as I thought the skin around my scar (double mastectomy) looked strange and it felt tight so he saw me - next day bless him - and asked me to come back in March to follow up. We were chatting about the fact that I was far more afraid of a cancer recurrence (higher than normal chance because I had Inflammatory BC) than I was of covid because of the pressure on the hospitals and he said he thought the hospitals here in Sydney would cope ok and there are no changes in cancer treatment here. There is definitely not the same chaos there seems to be for you guys (at least for now). I hope everyone gets the care and treatment they need xx

@iVampire thank you! I'm hoping I may not be here too long either (no offence!). My appointment is at 10, but I think it's going to be a long day by the sounds of things!

Good point about the paracetemol- husband usually takes the mix paracetemol and aspirin (I forget what it is called.....) and I usually take ibuprofen, if I need painkillers. So we barely have any paracetemol in the house usually!

Thank you for the spleen advice too. Mine was also found on palpation, I think the US I had was to check the lymph nodes and make sure there was nothing else going on.

Sorry, posted early by accident!

I meant to say, I don't know if you are in or near London, but if you are, I sometimes order from a French groceries site (Europa supermarkets) for French products. I think they have been busy, but we did a few orders from them recently and were able to get slots within 4-5 days and items we couldn't get elsewhere. I am also a big G&T fan!! And happy to drink the tonic alone too.... husband went to Budgens on the way home from work yesterday and managed to pick up two bottles!

Hope everyone has a good day

Well, having given up chemo earlier in the week, I found myself at my hospital yesterday. Special phlebotomy arrangements for bloods at chemo suite.

Hospital was eerily quiet. New tenting arrangement shielding entrance. Masses of HCPs, full carpark, but no patients. I think they must have been moved to lesser facilities and they're working flat-out to upgrade wards to ICUs. It felt like a field hospital the day before the first day of the battle of the Somme. Preparing for the London surge.

Brilliant appointment with my oncologist. He really listened to what I was thinking and feeling. Agreed that covid fundamentally changes things. Better I should only do 4 cycles than get weaker and weaker on the full 8. Also said that research seems to show that the max benefit comes early in the treatment. So wahey! And I was home by 1 p.m. Only 3 hours. Usually takes that long just to get drugs from pharmacy.

In the evening, my tiny terrace clapped for the NHS and I rang the ARP handbell, used during the blitz, family heirloom. It was a good day.

Good morning everyone! Love and light to you all ❤️☀️. Off to start Chemo ( carbo, taxotere, perjeta, herceptin) at UCLH this morning, the tumor is moving quite fast so I’m grateful (for nhs, for medical team) my treatment plan is going ahead with no delays so hoping the same for yous @Squiffy01 and everyone else in the waiting camp.

Thanks for the pointers on what to take along and to anyone who is a praying person please pray for me 🙏☺️

Just read all recent posts but will not remember e everyone's news - sorry -
@Jourdain11 and @iwillnevereatspaghetti, sorry to see you both here, but welcome, and sending you both very warm wishes for the best possible outcome.

@Trumpton poor you with all the pain, so glad you were able to get the drain bottle changed, hope you can keep comfortable now. Also commiserations to @Hippiechick162 and, er, someone else who had just had surgery and was in pain.
@Kimsha good luck with chemo, hope your first treatment is trouble free.
And sympathy to all who are struggling with interrupted treatments, delayed appointments, waiting for results, having problems getting food, medicines or tonic water .
Apologies to those I have missed.
@Squiffy01 was it you who said you'd registered on a Government website for particularly vulnerable people? It might be useful for some of us here if you could post a link - there are so many Covid-19 sites now, I get a bit lost!
Love and hope to you all x

@Squiffy01 no need, I found it immediately www.gov.uk/coronavirus-extremely-vulnerable

@Bloodybridget and others - did you get The Letter as well as the text?
I rang my GP and they confirmed I am on the list and the following day I got a four page letter telling me what to do and not to do. It seems those on the list (The Shielded) should get some priority treatment. I think we will get priority for certain kinds of help. It's not a list you want to be on but I think it's important that if you are at extra high risk your NHS records should show it.

@iVampire I got an e mail from Sainsburys yesterday which said they were going to get a copy of the NHS list of the most vulnerable later this week. I presume that means all the supermarkets will be getting the list (I'm glad they are not fussing about data protection). Maybe that will be when we can get priority slots?

@Skap I did get the letter and the text, but I don't actually fall into any of the categories to be classed as vulnerable. I tried registering on the website anyway (bad, I know, but we are trying not to go into shops, and DP is very anxious about infection) but eventually you're asked if you have any of the qualifying conditions, and when you say no, it obviously says you can't get on the register.

Lumpectomy done this morning. Feeling a bit sore and achy. Its the longest time I've spent away from DD and now can't pick her up for at least a week. As we are self isolating here in NL and have been since diagnosis, DP is mostly taking care of DD. It was her 1st birthday yesterday. We managed a banner, balloons, dodgy card, a few presents and muffins with a candle. Not a great birthday but we were together!

In terms of care of my boob now, any advice wise women? I've got exercises to do but is there anything else?

to those recently diagnosed, awaiting treatment, after treatment and dealing with this almighty shitstorm.

Exercise has to be the main one . But I also wrapped myself in clingfilm and had showers . ( for my well being )
And rest . You are not super woman . Stay in your pjs it signals that you are not firing on all cylinders . The moment you are dressed you will be back on duty . Trust me on that one !
Fluid , fluid keep your fluids up .
Keep on top of pain , don’t let it ramp up before you take pills .
Watch constipation if you are on codiene, a GA slows your bowels as well .
( recovering from mastectomy here ) I am doing all of the above .

Had second round of chemo yesterday at Guys. It was like Fort Knox getting in. I'm wearing gloves and a mask. I drove and parked in the car park it was open barriers up. I'm going to drive from now on. I'm not taking trains or public transport anymore. I've still had no texts or letters sent. I checked with my old flat mates nothing's come for me.
Feel fine again except fever and blotchy in the face. Aloe Vera is my new friend.

I'm going back every two weeks now and most likely having double treatment. They said it'll be 3 hours. Think my nose hairs are going. I'm getting blood when I blow.

Moved house Wednesday. It's a luxury not having to wait for the toilet, washing machine and kitchen!

Getting panicky now because work have out everyone on furlough today until further notice. Can only leave for hospital. No one can visit me. All a little shit really. Went to Tesco after chemo. No eggs, chicken flour etc. Still managed to spend over £100 and not much to show for it! Have tried and tried to get a delivery online on every single online shop going. Cant get a single slot. Muscle food will give me a slot for the 23rd April which is just crazy. I've registered as vulnerable online didn't even get an email. Did anyone else? How can you get the vulnerable slots? They're all booked solid. Even click and collect! I miss my daughter so much right now 😭😭

The inability to get online slots makes me want to weep.

I’ve realised why. It’s because with the weeks of isolation stretching ahead of me, and no normality, one shred of normal was continuing to be able to do my online shop. Browse and pick stuff myself.

And it’s gone. I’m utterly dependent on others, there is nothing I can do. And that’s a real blow

I’m not going to starve. There are plenty of volunteers to help people just like us.

This is more of a psych issue than a practical one. And I’m feeling really low. So many people have fond words about his irbid the right thing to do to prioritise the exceptionally vulnerable, Unfortunately it’s not happening for this

Thanks @trumpton. Might have to take some paracetamol to sleep. I can't sleep on my right or on my back. Left side is proving difficult too as incision is along side of boob so pressed on my underarm. Might try a bfeeding pillow wedge under there. Have my list of exercises and plan on pyjama-ing all day. However, having a 1 year old makes life a bit difficult, especially seeing as we can't send her to nursery/childminder. She started walking at 10 months and now running around. She also likes to pounce on you!

How are you feeling at the mo @trumpton?

Oops to bold! Trying to type at arms length (right handed with a right boob op) plus glasses not on/tired.

I’ve had a lot of text messages. Got my letter yesterday and had a phone call from the GP earlier in the week putting me on a website, think I mentioned it on my last post.

@Bloodybridget glad you found the link.

I to am also having trouble with delivery slots. With Ocado have tried contacting them numerous times by no response. Although am apparently on priority list cause we have a smart pass so clicked my link to wait over an hour to get on the site for there to still be no slots. Giving me the rage. Infact everyone is giving me the rage lately. All these people that won’t listen, that won’t stay inside. I know two people that have gone out in the last week when they have a temperature I just want to scream.

Someone told me in the announcements today that it is an option for cancer treatments to go ahead in private hospitals, hopefully they work something out.