Clinics, updates and Chemo planning

My diary has been jam packed this last two weeks with clinic appointments and appointments indirectly related to chemo planning. You will be surprised to hear that only ONE lunch date was booked in amongst all that raff, this one lunch date I was so looking forward to I had to cancel as I was struck down with a terrible chest infection. I’ve been in bed the best part of a week and to be honest it dampened my spirits of the whole positivity thing with chemo coming up. I think when your starting a new journey, good or bad, you read up, take advice and try to picture yourself going through the mill. I thought with me chemo side effects  will be what they’ve said it will be , like a bad hangover. But if it is a smidgen like what I’ve felt this week then I am dreading it.

So it a nutshell, I have seen my lovely breast care nurses, more seroma drains, oncologist for official diagnosis, twice. Breast surgeon. Macmillan. Specialist bra fitter. Genetic consultant, Ear, Nose and throat specialists and Chemo nurses.

I’ve spoke about in previous blogs how I felt 4 weeks post Mastecomy and being under the knife, but kind of left out all the clinical stuff so I can relate it all to one post. Now, although I am nurse, I have never worked in breast services or oncology, or Head and neck, so my writing is purely on what I have been told. I’m not an expert in these areas so please bear with.

Seems like ages ago now, but on the 28th Jan I met again with my breast consultant to discuss how the operation went and the pathology of the breast tissue taken away. I had two tumours in my right breast, they call this multi focal. One was 4cm and one was 6cm. They removed 33 lymph nodes (huge amount, but went quite high up near collar bone) of these 33, 16 had cancer in. The highest one was marked and this was clear (phew!) Next up, they wanted to check my left breast with ultrasound to see if there were any tiny tiny tumours growing, this came back clear too! I then sat around waiting for the first time to meet my oncologist.

We met my oncologist, it was a scary time actually. The thing will oncology doctors is, although they are very compassionate, they aren’t the type to fluff things up. Everything they deal with is cancer related, it’s not the brightest subject. I know you can have better cancers and worse cancers, but it’s all cancer at the end  of the day, so they have to be quite blunt.

My oncologist gave me my official diagnosis. It’s a bit like having a stamp on your forehead that you can’t wash off when you get in from the hospital. You kind of go to sleep knowing its there, forget about it for a while and then look in the mirror in the morning and the stamp is staring back at you in the face. I originally thought my cancer was ER+ which in my first post mentions about hormones called Oestregen basically feeding it, which is why I had my contraceptive implant removed to try and slow any hormone involvement down. This was all from a biopsy though. The actual diagnosis is a bit different.

She told me I have a breast cancer that is called ‘triple negative’. This means that it’s not caused or helped along by Oestregen, progesterone or HER2 which I think is a protein. What it could be caused by though is a genetic mutation called BRCa 1 or BRCa 2, but with no family history of breast cancer, they are still not sure. I was staged at stage 3 T3 N3 M0. T- meaning tumour status, N- meaning node involvement and M- meaning metastatic spread, it ranges from 0-3. I was told that I am a high risk of this cancer returning, and that chemo would be used to mop up any cells hanging around and radiotherapy for that final blast. We all came out of that consultation completely flat, energy drained from every cell and felt like shit.

But anyway! That was January, moving forward I have so much more to tell you!!

In the meantime, I’ve seen the breast care nurses every week to have this Seroma drained, they are still taking off huge amounts of fluid, which has now unfortunately delayed my chemo by another week. I have been to a session held at the local hospital called ‘demystifying chemotherapy’ and it’s put on for patients who are about to start chemo and what to expect, to eliminate myths and see the day unit where we will be having it done. It was really interesting, well worth going to, by the end of it though I was so exhausted from information overload and I think that was the start of this chest infection developing. We got given a little goody bag, there is a Macmillan organizer in there and a cd called ‘a ball of light’.

On Monday this week I had to have the pneumonia jab. I arrived at the doctors surgery and was told I was a week early! The look on my face must of been a picture as before I even opened my mouth the receptionists said “but il see if they can see you now”. So I had that done, it wasn’t painful at the time, but boy was it the next day. I couldn’t move my arm for two days and 5 days on its only starting to settle down, I’ve had a raised red rash on the site of injection – by far the worse jab yet.

On Tuesday this week we were back at the local hospital for more clinic appointments. This time to see the head and neck specialists to rule out cancer of my parotid glands. These were enlarged on my whole body CT scan before, I was very relieved to find out these were not cancerous. I had an ultrasound of my face and neck to check on these beauties. It wasn’t a good look mind you when you sit up off the couch with clear jelly all over your face, in your ears and on your neck. I then met my oncology consultant in the afternoon and briefly discussed chemo planning. My picc line was due to be put in next week with chemo starting on the 22nd feb, but because I keep developing these seromas they’ve put it back another week 😫.

Friday this week I had the pleasure to experience a bra fitting service for ladies who have had surgery, it’s called Nicola Jane, their shops are not based on the high street for obvious reasons. I visited the Chichester shop with my sister. You walk into this little delightful shop and are greeted with your lady to assist you, I was very nervous as didn’t really know what to expect. We were there for about an hour, choosing different  underwear, swim wear (massive no go though whilst on chemo!!) and talking about prothesis’s on the market and all things breast! I’m so pleased I went to this company, I felt I could trust my bra fitter Louise the minute I met her. I have my prothesis fitting next week at the hospital, I can’t wait! Bye bye softie….

And lastly, (oh I’m so glad it’s the weekend!) I had my first genetics appointment yesterday. I met the consultant who had a family tree already typed up of my family, from information already given to the team. Because there is no family history of breast cancer, I have about a 10% chance of carrying this gene called BRCa 1 or BRCa 2, but she was saying that most of my aunties and uncles and both parents are relitively quite young still, so we can’t really rule out the ‘no family history’ part yet. I hope it stays that way though, with no family history and I’m just a one off. If I have the gene, then that gives us a cause of my breast cancer, if I don’t have the gene (90% chance) then it’s just bad luck. I find out the results of this at the end of April, if I have the gene, then my two children have a 50% chance of having it, but won’t be tested unless they want to as a young adult. Also this means that my brother and sister have a 50% chance of having it and that one of my patents must have it. Which ever parent it is, their siblings will be tested if they want to and then if they are positive, their children and the list goes on. We will play that game when the results are back, there’s no point worrying over something that we don’t know yet, I’m very low risk so we will just wait.

So apart from all these clinic appointments and chemo planning and having the heaviest of chests, it’s all been ok so far. I am organizing a holistic approach to chemo planning shortly, I’ve been buying natural products to help with skin, hair and nails but more to come on that!

Have a good weekend everyone,

much love,

Michelle xx


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