Trying not to panic!

Hi Julie  and welcome to our little corner of the Community and I see that you have been active already - well done.

First, well done in getting through your treatment and yes, your Immune system will still be in recovery mode but should kick back in reasonably quickly. 

During chemotherapy the time when your immune system is most vulnerable is normally days 7-14. This is when there is you have an increased risk of infection.

For some people, like myself, the immune system recovery can take longer and after a lot of treatment (hit my name to have a look) I am left with a defective immune system and combine this with a few other medical issues makes me open to infection in general.

Your team are the best people to advise you as to how you are doing and what precautions you should be taking at this time.

As the country slowly comes out of lockdown there are concerns, I am upon in Inverness in the north of Scotland so we are slightly behind the rest of the UK but after Shielding for about 100 days (yes I did go into my garden) we have over the past week been out and about but being very carful who we got close to and where we went.

We have had our daughter, husband and granddaughter(6) round in the garden and been out to their house but we all understand the risks that we all face so have been very carful.

With a multi-generational house hold we have you in the middle having the infection risk (not just COVID), your dear mum who, if she is like my 90 year old mum, is saying "......what is all the fuss about - we went through the war" and your daughter who just wants to meet her friends.

All you can do is be alert and aware. Not taking any significant chances but as COVID like other viruses is not going away soon, we will have to adapt life to live with it.

One of my 'left overs' post treatment is that my second Stem Cell Transplant killed off all my childhood vaccinations so I had to get them again and the funny thing was I was getting them at the same time as our youngest granddaughter lol.

But I can not have any live vaccines as my immune system can not deal with them so have not had the MMR so for the past 4 years I have been in as much danger from Measles, Mumps, and Rubella (German measles) as I am from COVID but we have adapted life and are living as normal as can be.

We are always around to listen and talk.

Highlander ((hugs))

Hi Mike

Thanks for that, wow, feeling humbled, sounds like you have had it rough.  Yes, you just have to do the best you can in the circumstances, you can't do anymore.  I still feel guilty for putting my 18 year old in such a position where she has the responsibilty of my life in her hands at the moment.  Finding the balance of keeping Mum safe and allowing my daughter to socialise at distance is hard.  I am on day 10 post chemo and receiving Filgrastim to up my cell count and hopefully can build my immune system up as quickly as possible in the next few weeks, then 3 - 6 months they reckon.  Its the not knowing quite when you will stand a chance against any viruses out there, its really scary isn't it?  Many thanks for listening and replying.  J

Hi again Julie Julia67, it's good that you have found the Community as its a good, safe place to talk and unload.

I am humbled every time I talk with Lymphomaniacs as each journey is full of determination, guts and lots of hope.

I was on G CSF Injections for a good 3-4 months post my second Stem Cell Transplant (SCT) the one thing to look out for is bone pain. These injections kick your Bonemarrow into action and as the BM lives in your bones it can be very painful. But my team told me to take Piriton and for some reason it worked!!

Lockdown is not new to our household. Following SCT we were in basic lockdown for 6 months following first SCT and 9 months the second time so we had to be very very carful...... and even then I did catch infections and did end up in hospital a number of times with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia x2 and Septicaemia x2........ but I survived. 

I talked with my Macmillan Haematology Nurse Consultant last week and she reckons (it is all a guess) that I would most likely come through COVID ok, yes it would be rough but no more than what I have experienced before. In saying that we don't intend to take uncontrollable risks.

You will do what you need to do that fits your situation. For her own good, you will need to cut your 18 year old some slack....... but I am sure she totally understand the issues surrounding you and your mum.

When we have our 6 year old granddaughter round in the garden she totally understand that the 'bug' won't be good for granddad or grandma so she does keep a good distance, obviously there is some contact but we have hand gel and wipes and control all the hygiene. This is what you daughter has to do.

As I said, COVID is not going away soon and even when there is a vaccine - I will not get it so will do what we have done for the past 6 years and that is take care, control our environment and live and we have lived, went abroad....... we are just back to the start again but not that stressed about it.

When you have some time you may want to put some information in your 'story' as this does help give people replying some context, like the type of NHL you had.

Always around to listen and chat ((hugs))

Hi Julia67,

I’ve been shielding since the start following my O-CHOP treatment which ended in March. My advice would be not to panic and just be sensible. It was clear to me straight away that it would not be possible to follow the shielding guidelines to the letter so the trick I think is to do the best you can. My wife and I have slept in separate bedrooms, ŵe use separate towels and I sit as far apart from her and my daughter as I can at the dinner table. Doing the obvious stuff like washing hands regularly helps too. If you have a garden I would use it as fresh air does you the world of good after treatment. We have not had anyone visiting in our house for months to minimise risk but are now starting to have small social gatherings (1 or 2 friends) in the garden.

When my treatment finished it was at the point where COVID-19 was really starting to take hold and I felt a bit down and cheated as instead of relief and being able to look forward to a gradual return to normal life I was classed as a ‘most vulnerable person’. It was scary to think of the risks and having to shut myself away to an even greater extent. Once I got my head round the lockdown routine and decided to use the garden (being able to go outside was a big one for me) I felt a lot better. The shielding guidelines are being relaxed now so I think the main thing people like us can do is just use our common sense and make sure those we live with do too. Hope this helps.