Breast Cancer During Covid

I first found a lump in May 2020 and did not wish to go anywhere near Drs, we were in lockdown due to coronavirus and checked repeatedly for over the next 2 weeks before I decided that I needed to get it checked out. I moved to Liverpool from Scotland in Aug 2017 having worked as a Nurse for nearly 40 years.
Apart from registering with a GP since moving I had not attended the surgery and did not know the GPs at all. with trepidation I called on a Friday afternoon June 5th and informed the reception of my lump, they told me a GP would call me back. Dr called me back and asked me some questions and said he needed to see me he gave me the option to attend that afternoon or see the female GP on the Monday. He told me to come along whenever that afternoon and he would be there until 5.30. My hope was he would tell me it was nothing. That was not the answer I got though and in PPE and examined by the Dr informed me he would refer me to the breast clinic and I would hear within a week. Scared and anxious I waited to be contacted.
heard from the hospital on 9th June and an appointment was set for 13th June at Marina Dalglish Breast Clinic Aintree Hospital Liverpool. I went down to Leicester to see my mother and sister on 15th June and never told them about my appointment the following day we were allowed to go into the house to use the facilities so this was the first time I had been able to see my elderly mother since March , it was a beautiful day and we were able to sit in the garden for a few hours. I don't see any point in worrying anyone else until things are confirmed and especially during these strange times.
 
Hospital Aintree Marina Dalglish Breast Clinic
appointment 16th June met the Consulant Dr and she examined my lump again all masked up and temperature checked going in and nobody can accompany you. I had a mammogram and ultrasound done. During the scan I was asked where I thought the lump was as the Dr had marked it elsewhere, when I pointed it was where the Scan confirmed it was too. They did a core biopsy and inserted a clip to track my lump and told me it looked as though one of my lymph glands was also slightly enlarged. The staff were all very pleasant and welcoming and explained what was going to happen. When I returned to see the Dr a Breast Care Nurse (BCN) was there too I knew this was ominous and Dr confirmed I had a suspicious lump . I was told I would be asked to return in 2-3 weeks once they had my results back.
funnily enough a friend called round unexpectedly that afternoon and it was a beautiful afternoon and we sat in the garden and she had made us some masks again I never mentioned anything but I remember being quite sore and uncomfortable.
 
My next appointment was 1st July they called to confirm after the MDT had met and discussed my results. Saw the Dr and BCN and they informed me it is cancer - through a mask and on my own ! it felt a very lonely way to find that huge bit of devastating news. I was informed the next steps would be surgery - a lumpectomy and a sentinal node biopsy with 2-3 lymph nodes removed. If no lymph involvement then it will be radiotherapy and medication for 5 years. They asked if my husband wanted to come in and we saw the BCN together and informed I would need to isolate for 14 days beforehand and that she would try and organise the surgery for 13th July at the Spire hospital. I asked about treatment before surgery and was told we are in a pandemic and we have only just started back operating at the spire a covid free hospital. At least no mastectomy.
I was told a secretary will call to confirm and we got asked if we have any questions lots of reading material given and all very real and scary now told we get free parking - only question my husband asked was how do we get the free parking !
 
Isolation time ! how strange to not see anybody or go anywhere due to the Covid risk and still have everyone to tell - even about the diagnosis. Secretary called to say Spire rules I have to isolate for 14 days so surgery unable to be on 13th confirmed for 16th July.
We told our Son and daughter in law to be on 2nd July on messenger a few tears were shed our daughter in Australia is on holiday I will tell her when she returns on Monday 7th July. Told my sister on the Friday 3rd July and told her I am unsure how to tell my mother if at all ? My Daughter was very upset to be so far away and not able to travel back. Her husband is going away next week for 6 months to Egypt. Tried to reassure our son as he said he would come down, that even if they lived round the corner I could not see them at the moment. Andy and me doing our 10000 steps daily around the garden! They are not going to mention anything to my grandson in Oz at the moment. I need to attend for a pre Op assessment and to see the BCN to sign the consent form, an ECG and a Covid test 2 days prior to surgery. No support available due to Covid. I was told about the usual support groups available and I was given a heart shaped pillow. Agreed with my sister I will tell my mother on facetime 2 days before surgery. I think this helped as she did not have as much time to worry and as my sister already knew it was not a shock for her and she was able to reassure my mother. My Covid test done at Aintree very very problematic to find and not a drive through at all so no isolation done as had to get out and go in to the unit.
 
!6th July - Surgery
I had to be in the Spire for 7.30 am and was dropped at the door alone. led to my room met the anaesthetist and Dr . Dr told me I am too quiet and do not ask enough questions. In theatre for 10.00ish and I remember being awake in theatre at 11.30. All very calm and peaceful and lonely ! lots of people make there breast care journey buddy whilst in for surgery but I didn't meet anyone else.! I was escorted out and walked to meet Andy to collect me at 4.30pm. I felt ok and steri -strips on my wound informed the Dr was pleased and felt it was successful at removing all the lump and lymph nodes were taken too. I have trendy support stockings to wear for 6 weeks as well. No getting it wet for 10 days and will need to wait 2-3 weeks for the results they will let me know by phone.
My wound was ok and not too sore, it was a bit uncomfortable in the car and walking initially but dry and clean. I removed my steri -strips and wound aright. On Tuesday 28th I got a call from BCN to see if I had managed to remove the dressings ok ? I informed her I had and that I thought she was calling with my results she checked and said I was down for discussion at the MDT next weds ! 5th August it just takes for ever and the waiting is really tough meantime I have been doing my exercises.
 
Telephone appointment with Dr on 5th August. informed the tumour was twice the size and ER+ve and ductal invasive. No lymph involvement. I gasped at this as initially she had informed me that if no lymph involvement it would be straight to radiotherapy however today she changed her tune and said she wanted me to have a genomic oncotype DX test - who knew such things existed ? which checks the probability of the cancer returning and gives it a score and depending on the score I will either be advised to proceed with Chemotherapy or not. I do not need to go anywhere they will test the sample already taken but it will take another 2 weeks ! agreed to this. BCN on the call as well and will send information out about the test.
appointment call arranged for 19th august with Dr informed my score is 28 a score over 31 is indicative for requiring chemo and I will need to wait and speak to the oncologist it will be a video appointment.
 
Received a phone call to say my video appointment will be on Sept 2nd.
How strange to be discussing my treatment programme on a video call Dr was very nice and it enabled Andy or Handy as she called him ! to be there too, her advice would be to have the works to minimise my chances of recurrence in the future says no reason why I can not expect to have my 26 years plus and I am young ! so for a treatment programme of Chemo consisting of 4 lots of EC every 2 weeks and then weekly Paclitaxel for 9 weeks a short course !. If all goes to plan will be through by the mid January but definitely by the of end Jan. I was informed the side effects are horrible and wants me to have a PICC line in and will start in 2 weeks !. I
left it and left it and left it and no word eventually called the secretary and informed I have a follow up call on 30th Sept - I would like things to have started by then I explained there was not much point in a follow up call if nothing had happened by then ! I called 10th.11th and 14th September and eventually heard from secretary that I was to go for PICC line and assessment on 18th Sept at the Royal and first chemo on 23rd Sept ! all very real again now and quite scary too.
 
 
lots and lots of lovely gifts and support offered from friends and people as I told them on a need to know basis very strange times to tell people online or by video call or message and usually this is the time family and friends would be a great support and help pass the time and I am unable to even see anyone.
 
18th September
Everything just seems to take forever now and at the brand new Clatterbridge Cancer Centre in Liverpool- the unit managed to open in lockdown it is brand brand new . All still masked up and I am asked to go upstairs to have my PICC line inserted taken straight in great girls and PICC line appears in and I am back out again within 30 mins no problems or concerns. Talked to the staff about the pandemic and they were saying they had been asked to move to Critical care and IV drug info was left for them to update on - it wasn't needed and they were able to continue with the PICC lines but we talked about how easy it is to become deskilled in procedures you do not do regularly. it is also a daunting thought to return to do them under pressure. As prior to all this I had contemplated returning to Nursing as a call had gone out to all those who had left within the last 3 years to return. I was directed to the basement to have my assessment prior to treatment commencing on weds 23rd. my appointment was not for another hour and I had been told they would see me sooner but this seemed to cause a bit of confusion within the department and I was offered a cup of tea. Then a S/N asked me in for my assessment and said she would have her lunch afterwards. in for a bout an hour went through all the treatments and side effects, weight height and BP taken on right lower arm due to PICC line in left arm and sentinal node biopsy under right arm. No consent signed so Dr came down and I signed my consent it was nice to meet her . I asked about the stats for the cold cap which I was told that without the cold cap I would definitely lose my hair, with the cap I stood 50% chance of hair loss and of that 50% I had 50% chance of keeping some of my hair. Not what I wanted to hear. Dr had said the consent and appointments would all be sent to me and I would be starting treatment within 2-3 weeks I am unsure if I had not chased this up if I would be here yet at all!.
 
23rd September first treatment
The welcome was not the best ! on the 5th floor in a lift occupied by other people. only 2 chairs outside the door occupied by men. I went through the door to the unit and was asked to wait outside and the nurses would call me when they were ready. I had arrived 20 minutes before as was asked in the letter. More and more people arrived all standing in a small area not distancing adequately and a grotty unwelcoming area. Eventually called through temperature taken and sanitised, I was given a blood form and asked to take a seat in the waiting area. Initially all about the cold cap I was smothered in conditioner - my husband later said in the car it was like sitting next to a bounty bar! -very very strange feeling between the cap, my mask and trying to put my glasses on. given a handful of tablets informed they were steroids and anti-sickness to take before treatment and left with the cold cap for an hour before I could start my treatment. The unit was really busy staff rushing everywhere and a big turnover of patients bells being rung for patients finishing treatment at least 5 times and a balloon for a lady having her 50th chemo. Eventually I have treatments and then have to wait another hour and a half with cold cap after treatment finishes. Given all my medication to come home with steroids and anti- sickness each for 3 days. Extra anti sickness given for as and when required. Also 7 days of daily sub cutaneous injections of Filgrastim to boost my white cell count as the chemo makes me very vulnerable to infections -during a pandemic not what you want to hear at all. Also no instruction how I do this or would I do it as it is I am a nurse and I will do them but I think that was assumed. I was talking to a lady next to me who also had the cold cap, she was very nice and it was her second time with chemo and she asked if I had a hat with me to go home - that had not been suggested to me and my hair when they took the cold cap off was a mess ! and when they take the cap off you have ice particles in your hair .
Eventually get home about 6.30 called my mother and had some dinner and I do manage to message a few people but all evening and night and up until lunchtime the following day I feel very lightheaded and dizzy. I wasn't sick but felt very nauseous. But one down 12 to go.
Although explanations were given all this happened very suddenly and not enough time was given to researching about wigs and even though a wig voucher is offered it was not given or explained. But no advice on eyebrows or eyelashes other than it will delay treatment if I have them semi permanent as it is classed as puncturing the skin. Not able to get to the hairdressers easily as I had to isolate before when they were allowed to reopen after the pandemic and restrictions were eased. All too much of a rush and options not discussed and explained. All could be made a bit easier and less traumatic to find out things out as many people have experienced these before. And it would be really good to know which options work better or what is available. Feel even more isolated when you try to find out on your own.
Also really quite upset to hear John Travoltas wife aged 56 died of Breast Ca , then one of my colleagues from work who started as a staff nurse with the team 5 years previously diagnosed with Breast Ca in 2017 died 22nd Aug aged 31 on her daughters first birthday after messaging me to support me 10 days before .
Then a neighbour from Scotland for 22 years dies from Breast Ca on Oct 2nd.
Big chunk of my tooth breaks off the following Tuesday so I spend the morning on the phone to triage and the dentists emergency appointment offered as I have to go in first with no one else and I am more at risk of infection if I do not get it fixed. very sore and painful rubbing on the side of my mouth. Tooth fixed with a temporary filling.
I think it also made me realise that if I had been diagnosed only a few weeks earlier then the cold cap would not have been an option as it was not offered initially during lock down and also all surgery was postponed and people were offered medication to try and reduce the spread and size of the tumour. Chemotherapy itself was not stopped.
 
 
 
First follow up appointment 30th Sept with Advanced Nurse Practitioner ANP she is very nice and advised me to take extra domperidone as required if I feel so nauseous again. went through all other side effects and told me to only go at my treatment time not early like before.
arranged to call in 4 weeks and to not hesitate to get in touch if I have any queries.
 
2nd treatment 7th October.
the whole unit was much quieter than last time, staff seemed a little less busy and stressed and no bells ringing this time. Cold cap again and all my hair still so fingers crossed. no refreshment offered this time either. Quite a few patients sleeping today too very peaceful. Asked about a wig voucher as not offered previously but told to ask next week. All staff went home early and only me and one patient left and I didn't smell like a bounty bar this week and I took a hat. The covid rate in Liverpool is rising rapidly. No real dizziness this time slight nausea but did take extra domperidone and used the seasickness bands too.
Managed the meds and the injections this time and felt alright until the Sunday when I did not feel right my scalp felt tender and very sensitive just knew it was going to come out. I had been avoiding washing or brushing it really regretted having it cut short and nothing made any difference as by Monday hair coming out in clumps. feeling very fed up and sorry for myself and a few tears too.
At the hospital on the Tuesday for my bloods and asked for a wig voucher it took a long time to get this and didn't feel as though I was entitled to this. I had already made an appointment to go to Hairfairy wigs. seemingly it is a charity and if you have the coldcap they try and encourage you to try that first and not forthcoming with the voucher. query cost saving ? how about discussing this first and seeing how the patient feels and wants. Wig lady really very nice and tried a few on all masked up only me allowed in and video call to Andy. Felt all very unreal and a lack of pleasure doing something that in normal times would be enjoyable. Going to order me a lighter colour in one of the ones I liked. Can see how much hair loss I have already had and unsure if they will continue with the cold cap or not due to the amount of loss.
If the hair loss was discussed it could make the whole journey so much easier and feel less vulnerable and smoother for people going through it or experience it. I didn't want to go out only with a hat on or facetime and found it very tough telling the kids and very emotional.
 
Up for bloods on 20th October and the usual hospital entrance door was closed and informed it had only opened about 5 weeks ago and now all in and out the main entrance I felt much more vulnerable walking up the length of the hospital going past all patients via A & E and pharmacy and all the wards all for Covid lockdown. I found the Macmillan centre which no one had told me about. I am feeling very vulnerable walking along this long corridor and felt intimidated by three workmen walking the opposite way - signs clearly asking people to keep left they are walking left right and centre and did not want to move asked them and they laughed ! so stressed with it all and do not want to be here at all. New shielding guidelines and I am included in them ! very concerned as Liverpool has such high rates and the staff are not being tested. I am advised to stay away from shops and avoid people if possible and only go out for a walk. My Picc line was a bit raw and skin broken in a small area so they applied some barrier cream. Informed today that due to increase in Covid and the risk to me in attending they have reduced my visits to two weekly for my dressing as well with the aid of a bio pad ????. a smallcircle around my PICC line entry to prevent infection.
In between i had been back to Hairfairywigs and managed a video call with the kids too and even though I wanted to be different and go long and blond or pink and purple then I have decided on something that looked like mine was cut before I started chemo and I wore it home.
I would like to move to Cornwall or Bristol where the Covid rates are half or less than Liverpool. I find this bit scarier than the chemo!. 
 
Treatment 3 21st October
I asked if it was worth it to try the cold cap again and informed that even though I think I have lost a lot of my hair that I still have quite a lot left ! not so sure myself. It felt very uncomfortable on and I was given paracetamol and said I will try this time and if I am still loosing hair by the next treatment I will leave it.
managed all this today as well as taking a poorly hedgehog to freshfield animal rescue as it had an eye injury and was going round in circles.
After treatment headaches and lightheaded for 24 hours after the cold cap all felt really strange. really not sure if I want to do it all again. Meds and injections again.
By Monday after I had washed my hair and still chunks falling out I cut it all off ! Told the kids very sad day.
Tuesday Andy shaved my hair and cut it so it looks a bit more even. feels much better wearing my wig. Had a really upset stomach with cramps after my dinner on Tuesday.
Had a telephone call with ANP asked her to explain all the technical jargon on the letter from her so a diagnosis of IDC Tumour 35mm no lymph involvement and margins clear. Also mentioned that the radiographers secretary had called about 6 weeks ago to say I would have a video call in November and I have not received a letter - told me I have an appointment on 4th November 4th. otherwise a straightforward call.
Then on Weds I received a call from one of the BCNs who I had seen way back at the beginning of my journey in the elective care centre and just asking how I was and if I had had to have any treatment so I explained I had started my chemo and we had a chat about how strange it was during a pandemic and she said how hard it was telling people on their own and not being able to hug people. What amazed me is how the system here does not let people follow up people they are involved with and the BCN obviously had no access to my records as much as it was nice to hear from her and she did reiterate how I can call her at anytime.
My mouth has been so sore over the 30/31/1st and 2nd. Really sore drinking through a straw and such a horrible taste and no energy and my left toenail has come off too.
In for bloods on 3/11
a new nurse apologising for being slow told me she had moved from a respiratory ward and felt guilty as she had had enough of Covid. I talked about how important she was and it is much better she has moved than stay where she was unable to perform at her best and that she had done her bit and where she had moved to was just as important and also mentioned I had thought about reregistering when the pandemic called for nurses as I was still within my three years and I felt guilty that I didn't but look where I am now ! and I could not be doing it now and just as well that it wasn't to be.
 
treatment 4 Nov 4th
No coldcap very pleased I made the decision. Had treatment and saw the pharmacist gave me a prescription for mouthwash and gelclair. I had to wait for 30 mins at the hospital pharmacy to collect them. ANP , BCN and staff on the unit have all said the next drug paclitaxel is not as tough as EC. My dressing started coming off by the following day not good this time and we ended up having to locate some tegaderm dressings to do our own repair.
 
 
call with Radiographer 4th Nov
Consultant called. Very nice and easy to listen to and talk to. Explained I needed a 3 week break after chemo before I was able to commence radiotherapy discussed all the pros and cons and what to expect and that I can have it at Aintree and it would be at the clatterbridge centre there for 5 consecutive days and that would be all. It can be weds - tues not always mon-fri but ony a two day break. It will last for approx 15 mins each time. I need to go for an assessment first and a CT scan. I will be marked permanently with dots like tattoos ! received my assessment appointment for the Wirral for 22nd Jan 2021. to take my consent form with me.
 
Bloods 17th Nov seems along time since I was here a whole 2 weeks off and the side entrance is back open again. No hold ups today and in and out in 20 mins bloods and dressing done. Back tomorrow for the start of the next phase
 
chemo treatment 18th Nov
assessment done and I asked roughly how long I would be and I was told two hours altogether then I was asked if I had been given any cimetidine to take prior to my treatment which I hadn't either last time I was there or yesterday when I was up. Not the most seamless care so I was given famotidine to take orally and told I would have to wait an hour before I could have my treatment for it to work! Gave me piriton to try and prevent a reaction which if I take orally has no affect on me but I could have slept yesterday as it was going in ! had paclitaxel for one hour no extra meds needed this time - felt very tired once I was home and slept for an hour and half could not stay awake. however was wide awake until 2.30 am and then awake again at 7.30 so a bit tired now. also have some tingling in my fingers so need to see how that goes as not good sign to have it all the time. was on the forum for BC in Sefton last eve and somebody starting there journey very similar to me with an oncoscore of 32 and somebody asking about the coldcap too. recovery now and back twice a week for bloods and treatment for the next 8 weeks.
 
Bloods 24th Nov
in and out in 20 minutes the quickest I have ever been ! the last week has been uncomfortable with very tingly fingers from Thursday the day after treatment until the Sunday almost feels like I have burnt them but only in certain areas so finger tips and up the sides of my hands and just below my knuckles towards my hands and sore red shiny patches too - my thumb nails are turning black. My mouth has not broken or ulcerated this week but a horrible metallic taste again. My sleep has not been as good and I was very sleepy after my last treatment and slept for 21/2 hours when I got home and was wide awake until 2.30 am and I have not managed to sleep past 6.30 am for the last week. The skin around my PICC line is a bit inflamed so dressing changed to try to improve this. Had follow up call with ANP all went well and no real concerns to report asked to report to chemo staff if my tingly fingers remain and they may need to adjust the dose.
 
Treatment day 25th Nov
In for 9.30 and seen at 10.00 only just got my treatment started had my flush and meds now direct into PICC very sleepy again with Piriton IV and slept for the first time whilst receiving my treatment. No major concerns and home again and slept for an hour. Did sleep better that night but unable to sleep past 6.00am this week and feel tired. New tiers announced for Covid once out of lockdown and Liverpool has been promoted into tier 2 not that it will make much difference to me and new guidance is being sent out to those clinically vulnerable - me - and I feel it. The last letter arrived 2 weeks after the lockdown started so who knows when this one will arrive. Had a good first day this week post treatment no real tingly fingers day 2 and the taste is back !.
my skin on my forehead has really started to break out this week and is red and inflamed and on my left cheek I also have patches.
had a really sleepy Saturday and struggled to stay awake . Will mention my face when I go for treatment
bloods and PICC line done on 1st Dec.
treatment day 2nd dec
A big treatment day today as treatment number 7 so over half way of 13 today. All done and I saw the pharmacist and given lotions and potions for my skin . Had a little sleep again during treatment and did not sleep well again once home awake again at 4.30 am !.
My skin feels uncomfortable, dry and irritated and my hands have stared to feel the same. I have stopped using any other products other than this given to help. I managed a lovely walk in Rimrose in the sunshine with a friend .
Bloods and PICC line 8th Dec long wait in the department !
Treatment number 8 of 13 today. Informed my calcium levels were slightly low this had not been mentioned before. Agreed they will continue treatment today and the pharmacist saw me to see if I need to start on AdCal says its only slightly below and wants me to try and increase it in my diet this week and will do bloods for thyroid and Vit D next week to check and will review then and thinks I may need Vit D. otherwise managed treatment without a sleep it was very late today not until 3.00pm and treatment not started until nearly 4.00pm. very poor sleep the night
of treatment again and the following day my hands were very sore and inflamed .No relief from creams and feels like I have done a months washing by hand very raw. Feel dreadful after 2 nights with very little sleep. I slept on the 3rd night and how different the day looks my hands remain inflamed but I have managed to do some Christmas baking and we travelled up to a service station to meet our son and d in law to exchange gifts - my Christmas day out !
bloods 15th Dec no concerns and dressing done out within record time no waiting.
 
Treatment number 9 16th Dec
appointment 2.00pm treatment started just before 3.00pm and completed by 5.00pm quickest ever I then spent 25 mins in the pharmacy as I saw the pharmacist again as my hands are so sore they remain red and inflamed and not responding to the moisturiser as I could spend all day putting it on and it just soaks in ready to put more on again ! so she has given me a different ointment to try and to sleep like Michael Jackson wearing my white cotton gloves ! now Friday and not really much change re my hands and my face is now the same very red inflamed and blotchy - not the most attractive look for ones 61st Birthday - I joined in the virtual choir sofa singers this morning and tried to keep my face off screen ! not using any other products other than those prescribed either. My hands are all dry and scaly and sore. My hands have remained very sore and red and inflamed my temperature has been slightly raised too. Feel very sorry for myself. Given a little Christmas box from the staff that a Breast Cancer Patient had made up for all the BrCa patients on the unit very kind of her.
 
bloods 22nd Dec
Bloods and dressing done and a bio pad applied as the area around my PICC is slightly red I gave the staff a box of gingerbread NHS people in masks and with rainbows on their tummys and a chocolate tray bake for Christmas. Phone call with ANP and told her about my hands and skin and how the feeling in my fingers has been bad for over a week now too. I explained I had seen the pharmacist and had various lotions and potions but they were not making much improvement so far. We discussed and agreed that I would have hydrocortisone IV and have a reduced dose of Paclitaxel and try. She was unsure if she would be able to organise this in time for tomorrow - if not it would be the following week she asked if I would consider a weeks break and I explained I would rather try the reduced dose first.
 
Treatment 23rd Dec
number 10 0f 13
when completing my assessment the Nurse saw how sore my hands were and how blistered and red they were. My treatment was there ready to commence at 80per cent. the Nurse was not happy to proceed and asked if I would agree to a weeks break. I did not want this eventually after seeing 3 nurses and the pharmacist. They all agreed they did not wish to proceed with my treatment today. They had not seen such a severe skin reaction as mine for a while and wanted to see if the creams helped without the treatment and also because my neuropathy was bad too they were concerned for my hands if my skin broke down or if I got a cut it could become infected or worse sepsis. My neutrophils were also at the lowest end of normal they could be and I would have little resistance to fight any infection. My concerns in delaying my treatment are many mainly involving my sons planned wedding for the end of January 2021 having already postponed it from July 2020 and I would like Chemo to be finished by then and to feel a bit more like the old  Anniebell I used too! it also just extends it as I still have 4 more to go. I also think that if my skin flares up again I would rather just get on with it.
 
A week off over Christmas and I do feel more like the me I used to know my skin has improved it is not 100per cent but a big difference. Still 4 left though!
Bloods 29th Dec
Bloods and PICC done very quickly in and out although my appointment card said 14.30 when I arrived the nurses check in computer said 4.50 ! however they saw me straight away, I also saw the pharmacist who was really pleased with my skin so I am hoping if my bloods are alright I will be able to continue my treatment journey tomorrow. Also expecting to hear we are back in lockdown tomorrow.
treatment 10 of 13 again today ! 30th December
Allowed to proceed with chemo today my bloods were ok and my skin was acceptable too. Unit very quiet and I was called at 10.00 to see if I was able to come in earlier. I went in at 11 and was home by 20 to 3 and my treatment time was not until 3.30. I had hydrocortisone added to my IV as well as dexamethasone. My ANP had also mentioned a reduced dose 80 percent and I am unsure if this was given or not ?. awaiting to hear what changes are made to further lockdown here . Three more treatments left !!!!
A very quiet week the whole country in lockdown nobody can go anywhere and nothing but essential shops open again. Not that I am going anywhere anyway. The vaccine is rolling out and my Mother has had her first one now which makes me feel happier. My skin has behaved itself and is not as sore. I have even made it out for a walk too although the weather has not been great very wet and windy .But now only allowed outside with one person so no cycling groups anymore. I did make it out for a walk before my bloods - it was a struggle but glad I went.
 
Bloods today 5th Jan no concerns waited a while but will need to wait and see if they are alright to proceed with treatment. The area around my PICC is red and sore.
Telephone review with ANP today and she confirmed I had had the reduced dose and discussed the zolondronic acid and the dental cover involved and not able to have any invasive work done for three years. She will send information out and also about the Letrozole adjuvent medication they would like me to take for 3 years after my treatment is over . More serious stuff to consider.
Treatment 11 of 13 today 6th Jan
In for treatment at 3.00pm and all went to plan had my reduced dose and added extras to reduce any skin reaction. The unit was busy but quiet and I was out just before 6.00pm.
My week was Ok I am aware I am more tired than previously and my appetite is not great and feel the cold so much. My neuropathy is slightly improved I think on the reduced dose but now in both my feet as well - which is altogether a different feeling and I am aware I cannot grip my slipper on my foot ! so still tingly fingers and my taste has been rubbish all week .I heard at the weekend a friend who went through the same journey as me 8 years ago has tested positive for Covid so I am now worried for her too.
I also have a friend in hospital being treated for Leukaemia who messaged me asking what is the right response to someone saying " you are new you still have your hair ". Why are people so insensitive it is hard enough to get through this without it being made harder. I always say to people if they cannot say anything nice don't say anything at all.
 
Bloods 12th Jan waited about 30 mins today but my skin very red and sore all around my PICC line stings when being cleaned ! . Changed to a honeycomb dressing today and if it was warmer weather I may be attractive to bees if I was in short sleeves. I can put up with it as I hope if I am able to progress that it will be my last treatment next week and I will be able to have my PICC line removed. I was informed this needs to be out in writing and I have a call with my ANP on Monday so I will ask her.
 
Treatment 12 of 13 13th Jan
Bloods approved so all systems go treatment slightly delayed but out by 3.30. A lady opposite me was booked in for 11.00 but had not started hers before I left as her treatment had not arrived. I saw the pharmacist and have repeat prescriptions of my skin lotions and potions. They confirmed they will take my PICC line out next week. So if my bloods are ok then one more trip. I cant quite believe it yet after all this time.
Much more tired again this week only made it out for one walk. My taste is not great and my neuropathy much the same. Not much energy at all.
I had a call with my ANP on 18/1/21 and she confirmed last one on Weds and she will authorise for removal of my PICC line. Informed her I am at the dentist re my zolodronic acid on weds she will wait to hear and will let GP know I will be starting on Letrozole in 4 weeks time. I have my planning appointment for my radiotherapy on Friday 22nd in the Wirral. I received my shielding letter at the weekend so for someone not going out I am out more than most this week.
It feels as though I am moving forward at last and just Weds to get through and today I received a text from my GP asking to make an appointment for the vaccine !!!!!!! - work in progress as just engaged but I will feel better once I have had it too.
 
19th Jan 
bloods taken today my week has been okish the tiredness is more consuming and the taste and the dry mouth and the skin irritation and tingly fingers and toes all continue. As my dressing iwas so sore last week I asked if they could leave it as if my bloods were ok I will have my last chemo tomorrow and my PICC line can be removed. They agreed to this providing I remind them my dressing needs to be done if I miss treatment. 
20 th Jan treatment 13 of 13 
Big day bloods are fine and treatment is given. PICC line is removed it is red raw around the site. I ring the bell and staff video it for me to send to my grandson in Australia who later tells me I am the best bell ringer - I did explain he hasnt seen anyone else ring the bell. Thank you gifts given and it feels quite emotional and a point that seemed so far away has been reached. 
recovery time starts here.
covid vaccine given 21/1/21 
radiotherapy assessment 22/1/21
all seemed very straightforward CT Scan and my poor body marked with Tattoos where the radiation needs to go. I have been told I wont start until at least 3 weeks after chemo has finished.
very sleepy until Sunday spent most of the weekend horizontal and sleeping managed out for a walk on Monday and pleased I went and dates in for Radiotherapy 5 consecutive days from 10th feb missing the weekend. So exactly3 weeks from the end of chemo. Parts one and two done now surgery and chemo. need to start taking letrozole from mid february and have to return to the dentist to have my temporary filling fixed before I can start on zolondronic acid. Moving forward tho I can see light and I can see me not feeling so grotty .
4/2/21 tel call with ANP agreed to proceed with the zolendronic acid and I will receive a letter telling me dates for bloods and treatment as my bloods need to be done about 4 weeks before the IV and I will return to Aintree for these so probably March before the first one. My vit D level is 32 so even though I have just received my ones for 3 months supply from the government because I am shielding which I am recommended to take then I am to leave these and take the prescribed dose from my GP which the ANP will ask to prescribe.
5/2/21 Back to the dentists to have my temporary filling fixed. ! totally numb until about 3.00pm but its done and fixed and the dentist has prescribed me two different things for a dry mouth a spray and a gel- like toothpaste and both are great and really help.
I am also frustrated that my symptoms are not going as quickly as I would like them to go so my neuropathy and taste are still the same and my skin is still very blotchy and comes up in a rash every evening. One day at a time !
10/2/21 
Big day Radiotherapy starts today - first session staff really nice and welcoming feels much safer than the chemo unit much more spacious and light and bright. Staff explained what was going to happen and got me into position - feel a bit exposed lying there undressed - from the waist up !-with your arms above your head and breathing in to get your breath in the little bar on the screen and hold it there - but only for a few seconds and the waiting for your appointment time is much longer than the actual treatment. My gown or poncho is given to me to keep for the duration and a large tub of moisturiser is given and recommended to be applied x 2 daily but other than that I can do whatever - I may be a bit tender and red and could blister -will see how I get on. 
11/2/21 
second session no problems 
12/2/21
3rd session no problems 
now the weekend off for good behaviour 
15/2/21
4th session no problems 
16/2/21 
informed they were running 45-60 mins late but I was booked for a review so they advised me to have the review first and see what the wait was as they were asking other people to ait outside and they would call them back in. Then I got asked to go down as another unit was taking some of the patients who were waiting so I got seen straight away. 
my treatment is complete I am a little bit tender but not too bad. Review done and the first time I have sat down and talked face to face with anybody since my diagnosis so it was much appreciated and advice for follow up given. Advised to continue with the moisturiser for a few weeks and to report any problems. Otherwise aware of follow up calls in April and knows I do not have a date for Zolendronic acid IV yet. I still need to shield for 6 weeks post chemo.
19/2/21 
medications collected and commenced form pharmacy on Letrozole for 5 years ! not tolerated well by everyone so will give it a try and taking a loading dose of Vit D for a week then one a month after that. 
23/2/21
so far so good no immediate effects from meds and definite improvement in my taste and my neuropathy and my skin - nothing is back to normal but much better than it was. I noticed yesterday as well as loosing my eyebrows right at the end - about second to last chemo I have no eyelashes left now either 
The only way is up from here and there is light at the end of the tunnel from this and from Covid now. I am aware that throughout my treatment that 1000s of people have had - including some friends - Covid and the death toll is scary over 100,000 but we are being given so hope to be able to meet friends and family in the coming months and whilst I have been going through my own journey then I have not really missed out on very much as no one has been able to go anywhere or do very much anyway. Looking forward to seeing the people who have supported me throughout when I can. 
I will update when I have my infusion in March 
  
 
Anonymous
  • I can't believe what you have gone through as I was lucky, lumps found early and only had lumpectomy. What I can agree with is that not enough information is given and I felt totally isolated. 

    I was told that as it had been caught early I was lucky and through my own naivety I thought everything would then be "gone away" no mention of side effects or lymphoedema! I faced this on my own as I didn't want sympathy, just wanted it gone! No need for radiotherapy at my age as it wouldn't improve survival rate so I thought I'd "got away lightly"

    Eventually turned to my 3 sisters for support and felt better but I think better input from breast care centre at the start would have let me know what to expect instead of thinking how lucky I was.

    Forewarned is forearmed. They need to give you more information at outset as I am not one to ask for help. Brought up to be stiff upper lip! Dozens of brochures don't help!